There has been some recent news breaking the airwaves/internet waves about some clinical study data which you may find impressive especially if you are interested in entyvio reviews from patients. Farther down you can read about entyvio side effects as well.
The name of the medication behind all the hype is of course Entyvio aka Vedolizumab. Many of the news articles and published studies are describing it as a “new class” or form of medicine. Take for example Colazal or Asacol, or Pentasa, those three medications might have been described by your doctors as being in the “5-ASA” class of drugs.
Then you have other drugs like Humira and Remicade which may have been described as “Biologics”.
Anyways, Entyvio aka Vedolizumab is part of the (or starting since I have not heard of any others yet) “Integrin Antagonist” class.
What’s New with Entyvio / Vedolizumab?
Below, please feel free to read as much as you like about this new medication, I’ve included several links to studies from PubMed which go into some nice details about Vedolizumab.
But generally speaking (and I’m sure some immunologists can take this WAY further), the way entyvio works is different from some other “immune suppressants” in that it does a much better job of targeting specific parts of the immune system related to the colon and ulcerative colitis symptoms. If you step back a minute and think of our bodies as a whole…well that’s a huge complex massively complicated group of many different systems working 24/7. Within our bodies we of course have our immune systems. And within our immune systems we different sub-systems. With UC, we often think of the inflammatory response. So, to simplify the thinking, lets assume that Vedolizumab does a better job at targeting specific parts of the inflammatory response compared to some other medications. (That is at least a major part of the marketing that Takeda which is a massive drug company is explaining to the FDA in hopes of gaining approval.)
So again, please do some more reading on this medication if you find it interesting. I’m not big into medications myself, but they are successful for many UC’ers and that’s what this info-share is all about.
Vedolizumab links you may find interesting:
• My favorite diagram showing how this is different & how the drug works: diagram picture
• New and emerging treatments for ulcerative colitis: a focus on vedolizumab – PubMed Free article
• Vedolizumab – Wikipedia link
• Vedolizumab for the treatment of ulcerative colitis and Crohn’s disease – Free PubMed article
If any of you have first hand experience with a clinical trial and would like to share a “review” of your use of Vedolizumab (assuming you did not receive the placebo…) feel free to add that below.
Takeda has stated that this is the world’s largest clinical trial for IBD EVER… And, it seems that a major goal of this medication is to come up with another immune suppresant related therapy which hopefully will have less side effects when compared to its peers. So whether or not your into western medicine, I think we can all agree that’s a nice goal to have.
Best of luck to all of you,
Adam Scheuer
Submit your review | |
I had been taking other meds to control my symptoms but they weren't working anymore. I had absolutely NO life - I couldn't even go for a walk. I started on Entyvio in the summer of 2021 and I am totally symptom free. If it is possible, I would like to get off all drugs and manage my disease with my diet. In the interim, I definitely support anyone who has the opportunity to use Entyvio. The infusion is about an hour and I have had NO side effects.
I have been getting Entyvio IV infusions every 8 weeks since the Spring of 2018 and have never felt better. I am 53 years young and have suffered from colitis for about 28 years. Went through every medication under the sun and they would only keep symptoms and pain to a manageable level for years upon years until I was approved to receive Entyvio. What a game changer. A flareup now is slight diarrhea maybe once every 4 or 5 months at the most. Cannot recommend it enough and have had no side effects whatsoever.
After trying a lot of medication to get my uc under control ,Vedolizumab is the only one that is leaving me symptom free,i have an infusion every 8 weeks and I’m reducing my Azathioprine,hopefully I can come off all my tablet medication
After a severe flare this spring, I was put on the dual therapy of Xeljanz and Entyvio. I had developed antibodies to Remicade and Humira. I lost a LOT of hair previously with both Remicade and Humira. I was hoping it wouldn't be the case with Entyvio, however, the loading doses caused light hair loss, and the 4th infusion led to significant hair loss. I have probably lost 90% of my hair. I do not recommend Entyvio.
I have been on Entyvio since mid 2016 so three years on total. Before this I had unsuccessfully been on Asacol followed by Remicade and with Prednisone when flaring was bad and calprotectine levels high. Entyvio has worked well. I get infusions every 8 weeks and combine it with the SCD diet. I wouldn't say my stools are normal but I get by fine and have no blood in the stool. I have been in remission for about half a year judging by the calprotectine levels measured in the stool. I do not seem to have any side effects from Entyvio. As others have said it did take a while to take effect (if I recall it correctly about 3 months).
I was on remicade and built antibodies unfortunately. I started entyvio 16 MAY and had 2nd does 30 MAY. I hate this drug. Yes, I can tell my insides are doing well but that could have been from the remicade but the side effects of this entyvio are too much for me. I have a tender throat when I breath in or bend over, I have bad muscle weakness and shakiness in legs and arms, my anxiety has worsened, I have started to have bad dreams and dreaming in black and white when most the time I dream in color...that is when I don't have insomnia from this. I feel like I am in a fog but it's the muscle stuff that is really bothering me. I want off this med and see my doc on 24 JUN before my 3rd dose on 27 JUN. I want off all biologics but with remicade I only had some skin issues. This stuff which is supposed to be gut specific is messing with me worse than anything I have ever used. I don't want to do it anymore. Glad others get well and don't have side effects but it's been horrible since the first dose for me.
Used it for 8 months... no help...
This coming September(2019) I will have been getting Entyvio infusions for two years. It has kept my symptoms in remission with few exceptions. It takes longer to work than Humira but,Humira stopped working after a year of injections where Entyvio is staying the course. After some experimentation I have eliminated gluten from my diet so that may be a factor as well.
After trying just about everything else and being in a severe flare for 16.months,my consultant put me on this drug. Within two infusions, I was significantly better both from a Ulcerative Colitis and general wellbeing viewpoint, the relief was fantastic. I have to take prednisolone for another autoimmune problem, EPGA, but prednisolone never helped with my UC. I have been on Vedolizumab for 18 months now.
From a gut perspective, I have my life back, a recent flexible Sigmoidoscope showed that I am in remission and I can leave the house without fear. Side effects have been few, I still get tired for around a day after the infusion but that is nothing in comparison to the delights of UC. The length of effectiveness between infusions can and does vary a little, sometimes no issues, other times after about 6.5 to 7 weeks frequency and urgency increases a little but never any blood. I am happy to live with this.
The consultant has no intention of stopping this drug currently, which I am very grateful for, as I am that the NHS granted funding for its use.
For me, Vedo and I'm not overstating this, has been a life saver.
I didn't want to take Entyvio but a really bad, long flare led me to taking it. It has worked well so far (2.5 years). I combine it with 4 Lialda/day. I haven't had major side effects, primarily fatigue the day or two after infusion, plus increased anxiety. And it's expensive as all get out.
I started site  shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Adam!!
I just watched this on the Canadian news last night…very interesting…I wonder if there are side effects, and what the long term safeness might be. Too soon to tell, I guess.
The guy on the news last night who is taking this new drug said that he was still feeling totally normal after 14 months, with no symptoms, and no side effects. I was pretty jacked, to say the least…
I suppose time will tell.
Thank you for everything,
Bev
You be for sure right, we’ll have to wait and see how all turns out.
HOpeufully it works for many upon many though!!
Hi Adam, Do you know if this medication is or will be available in Australia??? Where
can I find out more information about it as I have a child who has Crohns
HI Tony,
I don’t know about the current availability in Australia. But, best bet would be to contact your local GI doctor, and inquire with them. I would hope they would be able to assist you right away.
(Also, be sure to find the company’s website online who manufactures the product, as there are often different “brand” names used in countries which vary from place to place)
best to you,
Adam
…oh, and it won’t be available in Canada for one to two years, apparently….
My doctors are very excited about this new drug. They said it will change the face of UC. I’m not as optimistic but I hope they are right. My doc says the side effects are close to 0! What?! They claim it will be out in March 2014. 1 of the many trails are being done here in Chicago.
Zero side effects would be great! I hope this is true…I still think FTs…(good bacteria) is the real way to knock UC into remission. No drugs is my wish and goal for the future of treating UC!!
Cheers all :)
HI Bev,
I had my first infusion last week and am scheduled for the second this Friday (7/31). No problems after the first infusion. However, three days later, I vomited all day, couldn”t hold anything in my stomach) and ended up in the Emergency Department for an IV infusion for dehydration, a lot of stomach cramping (intolerable) and lower back pain. Took Tylenol and Ondansetron for relief. Yesterday, symptoms begin to go away and today I am back to the usual UC symptoms except still have nausea! I want to continue with my 2nd infusion since this is my last resort prior to surgery. Do you think the bad day is associated with the Entyvio or possibly just a concidence? My gastro doctor doesn’t have a clue and is very perplexed. I can’t wait until there is a fully natural way to treat UC! Hope all is well with you. Is this the best way to communicate?
Sharon,
Have they tested you for c diff??
Hope you are okay.
Carissa
No. They have done no stool tests. I have tested negative in the past. I am now scheduled for an upper endoscopy and asked to be tested for c diff, and other things as well.
Hey Sharon,
So much for NO side effects, huh? Nausea…ah yes, I know it well. Just the so called ‘harmless’ drug, Asacol, made me nauseous every day that I was on it. If I took the drug you just took, I’d probably throw my guts up. That is how I seem to react to meds period.
I do not think that your reaction was due to anything natural that you are taking. Quite the contrary. If you got nausea after the infusion, then that has to be why.
Cheers and happy happy tummy thoughts my friend:)
were you checked for CMV (cytomegla virus? Common with UC for some and other digestive disease.
Bev I feel the same! FT has to be the way. I tried it at home and it didn’t take, I’m hoping this is more acceptable in the medical community very soon. I’m seeking a different donor
Cheers
Matt
Let’s hope it’s soon, Matt.
Any idea why the FTs didn’t ‘take’? Were enough of them done? It’s different for everyone. Some people need more than others. Also, you said you may need a different donor? I never considered that before, but perhaps some people do carry and have more good bacteria than others? This is all so interesting…and complex…
hi..
i was involved with a clinical trial (FMT) through proffessor Thomas Borody in Sydney Australia in Jan 2014 . which helped me at the time (when i say help i mean sometimes 1 – 2 may be 3 bowel movements per day formed nicely some days with a little blood and a few days without any at all) bug once i finished the trial my bowel did a back flip it felt like i was having withdrawl symptoms..
my next step at the moment is vedolizumab infusions.. i have never been on immunosuppressants as i am petrified of them..
currently on cortiment 9mg beudonfalk foam and pentaza 1g suppositories
any info would be great i need to share my thoughts as UC drives me nuts
I have my sixth infusion scheduled next week on 1/12/16. Last week I had a sigmoidoscopy and the doctor was amazed at my 95% improvement to my colon. I started Entyvio in June when I was in a VERY active flare, with blood and all. In a week the blood was gone and I have improved since then. I have gained about 8 pounds, which I needed. I don’t take anything else, other than probiotics. My BM’s are about 1 or 2 a day, and no urgency. A few weeks ago I started being a little constipated, when I mentioned this to my GI, he suggested eating more fiber. So now I am eating more fiber, prunes, etc. and still at 1 or 2 per day. I hope this is helpful. I have had UC for 3 years and previously only prednisone worked. Entyvio has changed my life. Happy New Year and best of health to you.
I want to try this medication!! Anyone know if the FDA approved it yet. According to what I read, i believe it’s been submitted for review (sitting on a desk somewhere at the fda).
regarding FT’s – they now have a new way of introducing the bacteria into the body – pill/capsule form (i know it sounds gross, just dont think about it lol)
Amy,
It’s up for FDA review on December 9 of this year. It’s been given priority status. And it looks like the name might change to Entyvio. Here’s hoping it’s everything they’re saying it is!
What drug are you talking about?
it’s called: Vedolizumab
Thanks. I am on Remicade. Feeling better but having side effects like allergies and fatigue. I read that this new drug could be more dangerous to people that are taking Remicade or Humira. Do you have information about it?
No, I’m sorry I don’t
Diagnosed with distal UC in 2010, and have had one serious flare that landed me in the hospital for a week last year, due to an allergic reaction to colozel. I’ve been on no medications and have largely followed the specific carbohydrate diet. Still, I have bad periods that restrict my lifestyle. A drug that promises to work with minimal side effects would be one I’d be willing to try.
Looks like the FDA approved it.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm398065.htm
Next question is how soon we can get it. I’m at wit send with my colitis. I’ve tried it all including humira.
Hey Jeff,
I’d ask your GI and see what he/she says. I wouldn’t be surprised if its just a prescription away.
I’m a little nervous to be trying such a new medication but the trial results look comforting.
We just watched Dallas Buyers Club last night. (great movie) but after my experience trying humira before it was approved for UC, and the movie…I can for sure understand the nervousness and I’m sure you’re not the only one. You might want to try and contact the woman who’s name is listed as the media contact on the FDA release link that was included in the newsletter emaiil today. She might be able to provide you with some more detailed info on side effects from the trial population.
In case anyone was going to try, this was the auto-response from the media contact:
I will not be checking email regularly. If your message is urgent, please contact the FDA Office of Media Affairs at 301-796-4540, or fdaoma@fda.hhs.gov for assistance.
thx for giving that a try and the update Rick. Maybe a phone call to them would be a better route to get some more details on this new med.
I am on Sulfasalazine and it makes my UC bearable, but I am still very easy to flare up. Joint pain all the time. I am on Sulfasalazine because I have no health insurance and it’s the most cost efficient for me. Was on Asacol HD for 2 years, it was so expensive I halved the dose and ended up in the hospital almost septic from a bad flare… What’s the average cost per dose of Vedolizumab?
Just emailed my DR’s office and will see if I can get on this. Balsalazide is getting old.
I have an appointment in two weeks with my doctor regarding this medication. I’ve been able to control the gut issues (more or less) with diet but the side effects (inflammation of joints, asymmetrical arthritis) is becoming bad. The data looks highly promising.
Excited about the FDA approval for Vedolizumab. Can’t wait to try it!
This sounds great, however, I would like to know how long this medicine stays in your system after just the first (one) dose. After having that nearly deadly reaction to Remicade and being bed ridden for over 6 weeks last year, I am scared to take meds that stay in your system more than 24 hours.
Heather, Cimzia is the biologic that sent me to the hospital. Humira gave me MS type side-effects/symptoms so I’m very nervous about trying a new injectable drug, too, but I think I am going to try this. Been flaring for about 3 months and just got out of being really sick for nearly 3 weeks. I’m taking sulfasalazine now, have an appointment with my gastro in June and will talk to him about the new drug. I am going to remain hopeful. I also take a lot of supplements and I can’t say anything really helps me. If the new med doesn’t help, I will finally consider a colectomy, I can’t continue to go through life like this!
Not long enough. I find it is wearing off after 3.5 weeks. My infusions are every 8 weeks, so this is hell to wait. I’ve been on it for 6 months now. Losing hope.
This new drug looks interesting! I have UC for 5 years now. I had a FMT done by a doctor. I had c-diff so I was able to get it professionally. Thank goodness to this site I found my new doctor that believes in alternative ways to heal other than drugs. He actually believes in the SCD diet.
I was so relieved to find a doctor that listens to me. I thought I might be able to go gluten free and eat some of those yummy starches after the FMT. Well, it didn’t work although I can get away with it on occasion, but I am sure my insides know it. I have a very stressful job and can work up to 50 hours and above and have been able to stay in remission for years with a few bumps when going off diet.
I like to have all the guns on my side. Meaning, I follow the SCD diet, I smoke e-cigarettes for the nicotine ~ yes nicotine has helped me a lot. I did not want to smoke cigarettes so I went to the e-cigarettes. I understand this only helps those who have not smoked before. I take L-Gutamine, IgG2000 DF, now 30 billion CFU Probiotic Daily DF (down from 100 billion after FMT), afraid to give up my Apriso (down to taking 2 per day from 4 per day after FMT) went off diet and had warning signs back on Apriso 4 per day. I would not say the FMT was all cure, but helped.
After my almost flare and saw a little blood. Went back on a strict SCD diet and took my Apriso up 2 more. Honestly, not really sure at this point if the Apriso is really helping, but afraid to change anything. I am under an enormous amount of stress and I just go in the morning between 1 and 3 times for years now.
So, this is my up to date story. Always looking ahead to what I may need to do or new drug to take. Looking a surgery and the bag, I am unsure. My question is do you have the bag forever or do they do reconstructive surgery to place that inside some how? Just want all the information I can have so I can make educated decisions through the UC journey.
I hope what has helped me can help someone else.
Cheers!
Jamie
can i get this drug(Vedolizumab) in india?
Rashmi,
I’m not sure. Maybe someone else knows on that. But, either way, you’re going to need a prescription, so talk with a gastro doctor out there and they should be on top of this new med and its availability for you too.
Hi rashmi
Did you check if this is available in india ?
Ram
Hi Ram or Rashmi
Did anyone know if this is available in india ?
Thanks
ram2
i heard Dr Reddy in Hyderabad may get it… I have not spoken to him myself so I am not 100% sure but you may want to try with him…
No it is not available in India yet , will take at least 6-8 months. and It is too expensive too.
Hi Adam,
I get a kick out of your videos and enjoy the support from all the postings. I am am RN who has cared for children/teens who are dealing with IBD. Never did I think I would end up with it too! I was Dx’ d at 42!!!
I have been dealing w/ UC for a little over 4 years(had a period of remission for 6-7mo in ’13) flared in fall, but things are improving with diet and the addition of 2 medical food supplements. EnteraGam and VSL#3 probiotics. I’ve had some redux in blood & frequency after using for 2-3 weeks. My GI does plan to start me on Entyvio(Vediluzimab) as my next go to treatment.
I have done Lialda and Imuran for most of my illness. Remicade for 1 year , but continued to bleed. Would love to get closer to a normal life, not quite ther yet! I would encourage other UCers to try the Vedoluzimab as it is more “gut Specific”. Ask to receive premedication prior to infusion( diphenhydramine & acetaminophen ) to reduce reactions.
Continued strength to all who suffer from this dreadful disease!
Thanks Lynn, and glad you’re enjoying the site. It’s such a new med, but I think over some more time we’ll have quite a few reviews on Vedolizumab as well. Time will tell,
Best of luck to you,
Adam
Hi Lynn,
Have questions as I read your post.
I’ve had UC for the past 17 years, steroid dependent, was in prednisone and asacol and colazal, but nothing but prednisone has helped. Then went on budesonide, mild stetoid, had beast ca and developed adrenal insufficiency after budesonide became systemic.
As I’m coming off budesonide I was put on Lialda, but top gun GI, have me diarrhea and faring itis big time, so I decided to decrease and finally stopped all meds!!
Terribly scared to go with out them!
Was also recommended EnteraGam, question, how do you like it, does it help?! VSL3, is that helping you?
Since I had cancer, I’m terrified of biological meds….
Horrible desease!
Lynn, How are you doing?
please keep updating about this medicine
I have had UC since I was 9 and I am 26, none of the drugs work. Remicade has now ruined my liver and stopped working so surgery is where we are at until NOW. Now I plan to ask about this drug at my appointment in a few weeks (if I make it til then without going to the er) This is hopeful. I donot want a bag!
I too a sever UCer since last 6 years with none Med helping other than Prednisolone that too with a Gap, taking Steroids nonstop makes it useless so u need to give it a break. lately I found LDN 4.5 mg with 10 mg Prednisolone doing some good Job . LDN alone or Steroid alone
is not as potent as the combo is doing I request all Ucers who are opting for surgery or non stop flare like me please try this combo. it will give you some room to figure out and try different diet or treatment options.
Did you gradually increase the level of LDN or just start with 4.5 right off the bat with 10 mgs of prednisone? I know sometimes doctors want you to start off at 1.5. And how long on this protocol?
Had colonoscopy today (my 36th as I have had 1 a year since diagnosed) and doc told me he wants to put me on Entyvio and oral methotrexate. I have been on SCD for 2 1/2 years with great improvement after a severe hospitalized attack , developed 100% antibodies to Remacaide with lots of side effects, and developed RA after getting off Remacaide.
Entyvio sounds promising since it targets the gut with little side effects to other parts of your body which sounds good to me. Seems like in addition to UC , doc seems to think I may have Crohns as well. Even though I feel fine, I have low iron ( get iron infusions) because I have small amounts of bleeding all the time from a part of my colon that is moderately to severely ulcerated and the other parts are almost normal. Really don’t want to take methotrexate but wondered if anyone else took these two drugs together. Will let you know how I do on Entyvio.
Good luck Elinor on Entyvio, let us know how goes:)
I just started my first Vedolizumab treatment yesterday. I will post a review up top after my 3rd treatment. I was the 4th person to receive this medication so far at the University of Penn here in Philadelphia (they just started last week). The treatment takes about 45 min to an hour, but I got pre-meds (steroid infusion, tylenol) so mine was more like an hour and a half. The pre-meds were used because of a past reaction I had on remicade (even though it’s a totally different infusion drug).
The drug is similar to Tysabri, but it only targets the lining of the gut which reduces the PML effect greatly. They still have to put the PML warning on paper and make you sign off, but so far there has been no reports of PML in over 3000 subjects. My first infusion went fine and so far no immediate side effects. My next one is scheduled for 2 weeks from now and then 4 weeks after that. At that point is when I should definitely see serious progress.
I am already feeling a little better the day after the infusion, but I have also been on another relatively new drug “UCERIS” for about 10 days now and I think that is helping some too. I am slowly tapering down on prednisone and I’m at 12.5mg heading down to 10mg in 3 days. Just to compare I was going to the bathroom about 9-10x a day 2-3 weeks ago with occassional blood and constant bad diarrhea. I was taking about 2 vicodin a day for pain when needed. I am down to 3 to 4 trips daily now and today started to see formation of stool again (and taking less pain meds). My diet has been pretty SCD compliant with the exception of white rice which has been a miracle for me since adding it back in. Everybody is different in this department and it usually depends on what the root cause of your disease is (and no one exact diet is perfect for everyone).
I have suffered with UC (pancolitis) now for 12 years (diagnosed at 18 and changed to crohns/colitis 5 years ago due to a fistula and minor stricturing) and my GI wants to remove my entire colon (bag me forever) if I don’t get my symptons under control. So here is hoping to diet and hopefully some revlutionary medicine in vedolizumab! The only drug that has ever helped me in the past has been prednisone before now. I have taken Asacol (pancreatitis reaction), Sulfasalizine, 6mp, Imuran, Methotrexate, Humira, Remicade (delayed allergic reaction) and Cimzia all with no success. That made me a perfect candidate for Vedolizumab (Entyvio).
My supplements I am currently on include:
SCD Multivitamin, Pantethine (Jarrow Formulas), Green Vibrance (when diarrhea is subsided some), Glutamine, NOW Candida Support, Garden of Life Probiotics, Vitamin D-3, Carlson Cod Liver Oil & NOW 100% Whey Protein Isolate.
Thanks for the detail Larry. I’m about to start this medication myself. Been on pretty much every drug such as 5 asa, tons of prednisone, 6mp, humira. Also tried things like diet, acupuncture and even medicinal marijuana! Excited about the potential of this new drug. Not too concerned of the PML risk because as you said there were no reports in the trials. Good luck with the treatment. Let me know how it goes. Hopefully I will start it this summer!
How are you doing now? Has the Vedolizumab helped? I hope so, because they might put my son on it.
Hope to hear from you.
jseberry@bellsouth.net
Been battling with UC for 2 years now. Allergic to the 5ASA’s so my Dr cleared me for Entyvio this week. Hopefully have my first infusion in a few weeks. Hoping to hear back from the other folks that have recently started. Keeping our fingers crossed for all of us.
David
Boise, ID
I will receive my 2nd Entyvio infusion tomorrow. Had the 1st one 2 weeks ago. Next infusion in 4 weeks (following the recommended schedule of weeks 0, 2,6 and then every 8 weeks thereafter.) Doc advised that no change will be noticeable until after 3rd infusion at the earliest…….I’ll keep you posted!
So many questions…
I’m scheduled to receive the first infusion as soon as they get it in.
Any side effects?
What are your current symptoms?
Did it take you long to get approval?
What have you done prior to Entyvio?
Thank you and best of luck with your treatment!
I’ve had UC since 1982. Started on sulfasalazine and courses of prednisone for many years. Transitioned to Colazol around 1998 (?). Added 6 MP in 2006 which almost killed me. Did great for years on 6mp, but the sh@t hit the fan in 2012….turned out that my GI wasn’t monitoring labs closely enough for the 6mp. Destroyed my bone marrow and just about every other blood level possible. Platelets went off of the chart. Ended up in hospital for 3 weeks as a result. Within 36 hours, UC was the least of my probs. I developed blood clots and bleeding on my brain and behind sinuses. With blood thinners (prob for life) the clots and bleeding cleared up in about 2 months. In the process, one of my optic nerves got fried and caused double vision for 6 months. Started remicade mid 2012. A waste of time for me. Went on to methotrexate weekly injections for a few months and then Xeljanz & Uceris after that. Had decent success with Xeljanz and Uceris. Doc then added Tacrolimus to the Xeljanz/Uceris regimen. Hoping that Entyvio is the answer. Tapering Tacrolimus now. Will taper Uceris after tomorrow. Cutting Xeljanz doseage by 1/2 too. Wish me luck!
Thanks Ken! Good luck.
Hi there everyone, had my second infusion last thursday. 3rd one is 19th of August. Still lots of mucus blood (9 times a day) .. Ulcerative colitis….. Hopes this is gonna be our miracle drug guys… There’s nothing else left. Steroids, tnf alfa… Nothing works anymore.
Keep you posted!!!
Greetings from Holland
Jeroen
Best of luck to you, I hope it’s the answer!
Wow. I thought I had it rough with a one week hospital stay (allergic reaction to Imuran).
Just got a call from my doctor’s office. The insurance company has rescinded their approval of Entyvio because I haven’t tried Remicade yet. Apparently, they feel I have to use every possible UC med before they’ll approve it.
Yeah, I was pissed.
I’d suggest having your doc appeal to the insurance company. All ins companies have a peer to peer review system. Good luck.
He did that late yesterday, so now it’s under review (again). They aren’t very hopeful. I’m calling today and if nothing else happens, I’ll be able to voice my opinion.
Just wanted to update everyone on my Entyvio progress. I had my 2nd infusion treatment last Wednesday July 23rd and my 3rd treatment will be on August 20th.
My bloodwork before receiving my 2nd treatment showed elevated white blood cell count of 14.1 (up from 8.6 before the first treatment). My Doctor called me after the 2nd treatment to see how I as feeling because of the bloodwork and I told him a little low on energy but nothing out of the normal. Well the out of the normal happened about 2-3 hours after the call when I started feeling like the flu was hitting me (weakness was the first sign).
Turns out that Upper Respiratory infection is pretty common side effect in the early stages. I ended up with a sore throat, some weakness for a couple days, and swollen glands (never any fever though) . Some other side effects that came on were pain in my knees that comes and goes and headaches. Important to note that I had to go back up on my prednisone to 15mg a day and I usually get headaches just from that so that is probably not Entyvio related or maybe even just a combination of both.
The fact that I was on prednisone when starting only increased my chances for infection since it is an immunosuppressant. Anyway the sore throat slowly got better and now after about a week (with no antibiotics) I’d say it’s still slowly going away on it’s own. I’m not going to take antibiotics unless it gets worse and so far it’s only gotten better.
As far as side effects go this isn’t too big of a deal I suppose. I will know when I get my bloodwork done again in a few weeks if everything is fine. The elevated white blood cell count was very likely due to the infection. If I notice any other side effects I will update again on this thread.
For me I only seem to be getting better SLOWLY as each week passes. As I said in my last post I am on Prednisone and UCERIS as well. I have been on the UCERIS for 30 days now and the prednisone I will be tapering down to 12.5mg tomorrow. I was down to 7.5mg, but when you have been on it as long as I have you have to increase the dose when you get sick since my body isn’t making cortisol on it’s own yet. The dose was not increased due to anything with my colitis/crohns.
Good luck to the others getting the treatment and I hope you don’t suffer the side effects like I did. But if you do just know that these are common side effects with the treatment: “Common side effects include common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities.”
As I said was at a greater risk for infection being on the prednisone since it is a strong immunosuppressant, but doc forgot to mention that to me before starting. All in all it’s not that big of a deal and more than worth it if I continue to get better and go into remission. As another poster said the biggest progress is usually seen after the 3rd treatment. I believe the prednisone and UCERIS helped my gut start healing some. Before starting UCERIS and Entyvio I was using the bathroom 9-10x a day with some blood/mucus and just straight “D”. Now I am rarely seeing “D” and soft stools are the norm with about 3-5 bowel movements a day. I am very happy with that progress but the urgency can still be a factor which I hope will go away as I continue to get better.
As noted before I have Pancolitis (entire colon and rectum) later changed to crohns/colitis about 4-5 years ago due to a fistula in ano and signs of a stricture that isn’t bad at all (basically they don’t know or I just have both in large intestine). My prometheus lab work showed 92% Ulcerative Colitis.
Hope this information helps!
Larry,
thanks or sharing your experience with this new drug. I have been using Remicade for 2 years, fairly unsuccessfully and I am thinking it might be time to change docs and was hoping to find out who your doc is at Penn, and how many people are receiving this drug now at Penn? thanks for any help you can offer.
Heidi
Hi there UC’ers,
As i Told in my above post my stools were still 9 times a day (mucus blood diarrhea). Im in week 3 of vedolizumab infusion (getting the third the 19th of August) Since two days my stools are 4 to 5 times a day. (Still diarrhea and mucus but not that much anymore) Hope This progress continues.
Keep you updated and post in a week!
Jeroen
Hi Jeron,
How are you doing with the medications?
Joanne
My 3rd infusion is scheduled for August 28. Hoping for some progress after that. My GI ordered up a stool test for me, Calprotectin, as she advised that it’s the best way to monitor the inflamation in IBD. I just dropped off my “samples” to the lab this AM. I’ll keep you posted! I am off of 1 drug, Tacrolimus. Will be tapering the Uceris after the 3rd infusion. Once off of Uceris, I’m supposed to cut my doseage of Xeljanz in half.
Hi Ken,
How are you doing?
Joanne
Hi Joanne-
Thanks for checking in. I am feeling okay, thanks. No major change yet, however, certainly not worse and really haven’t had any flares in quite a while. Haven’t had blood in well over a year. Loose stools are mostly the norm for me, unfortunately. Decreased frequency, which is good, however! At some point, we’ll be tapering my Uceris, Xeljanz and Tacrolimus. My next scope is on Dec 12. At that point, I’ll have been on the Entyvio for 5 months. I’ll keep you all posted.
Ken,
Thanks for your reply! I hope your scope goes well and you are healing.
Thankful for this site.
thanks all please keep posting , also let me know if any thread is going on for
LDN for colitis
Hi Mirza,
Here’s an LDN thread that you might like:
https://ihaveuc.com/is-ldn-the-new-cure-for-colitis/
Are you still on the 10 mgs prednisone and LDN? Did you start out with 1.5 mgs and work your way up to 4.5 mgs? Please let me know how you are doing?
Thanks,
Lynn
Going in for my first infusion today. Nervous in general, but really excited. Anyone else have updates on their progress?
Good luck! My 4th infusion is on 10/23. No super progress yet…..no side effects from infusion. Keep us posted!
Thank you for all of the updates on your infusions.
I went to Mayo Clinic for a consult and they recommended Entyvio. My story is very similar to many who have posted on this thread…lots of meds, nothing works very long except prednisone. It has caused bone loss, eye problems, joint pain, low thyroid, etc. So , I think this is my last medication. My older brother had colon cancer and has been “bagged “for 17 years. He is encouraging me to have surgery to remove my colon and to get off the mediation train. He is concerned the meds are just killing me slowly.
I am on the SCD, Mayo also mentioned FODMAP diet, probiotics ( SVL#3), exercise, a skin cancer check, and lots of immunizations ( due to Immuno- suppressant meds). So, I am meeting with a new GI this week and taking Mayo recommendations.
BTW – I have a large 3 ring binder with all of my labs, CT scans, x-rays, meds, procedures, dvd’s, etc etc. As soon as I have anything done – I get a copy for my own records. I have dragged this with me to my trips the ER, 3 hospitalizations and every Doctors appt. It has saved me time and money, and stopped the medical people from doing / redoing a variety of tests.
Please keep updating your experiences with Entyvio!!
Hey Guys,
I had my last loading dose 1 month ago. So my first maintenance dose is on Nov 14th When I got my first loading dose I was admitted to the hospital I was in such bad shape.
They upped my Prednisone to 25 MG which killed the flare. I have been tapering down ever since and have not seen any blood at all. That is after 2 years of seeing blood daily. I am down to 10 Milligrams. I can’t say 100% yet obviously if it is mostly the prednisone or mostly the Entyvio. All I can say is there has been no return of symptoms while tapering (and believe me I have been on 10 MG of pred before and had symptoms – that is why I am excited.). On top of all that I really haven’t been very strict about my diet – which would definitely be a big No No in the past. I haven’t gone crazy (i still stay away from Salads and raw vegetables and Lactose), but for the most part I have eaten anything I want.
I am crossing my fingers that this progress continues. It is really weird after being sick for so long to poop once a day and see no blood.
Pray for me guys that it continues! – Thanks
Chris
P.S. – other medications: 150 Milligrams of Imuran.
Hi Chris, so you are getting the Entyvio infusions and you are also taking oral Imuran? Are they giving you prednisone with the infusions? I was told by my Dr. that my first infusion of Entyvio would include 40 mg of prednisone to reduce the possibility of a negative reaction to the Entyvio. This really worries me.
I am currently on 25 mg of prednisone along with Azathioprine 150 mg. As far as colitis symptoms – I am “symptom free”, but the side effects are terrible. So, I am tapering off the prednisone and will have another scope Nov 4th to see what is going on ( they are now concerned I have both Crones and UC, along with CMV, and fighting off CDif).
Part of me wants to chuck all the meds but after 30 days in the hospital and falling under 115 lbs I will do the scary meds for now. Part of me allowing another scope is to make sure I am a good candidate for surgery if needed.
Please keep posting your experience with this med- I really appreciate what you are posting!
Joanne
Hi Joanne,
I will be glad to keep posting. My thoughts and prayers go out to you.
To answer your questions I am taking oral Imuran. Three 50 MG pills a day. My doctor says 1 MG per pound so I am 150 pounds so 150 MGs. He said there was a chance that is wasn’t doing anything at all for my Colitis, but he recommends I take it because he thinks it will help keep the Entyvio effective over the long term. I trust him and this is a serious disease so I am not taking any chances.
They are NOT giving me prednisone because of the infusions. I was in such rough shape leading up to my first infusion that they bumped up my prednisone to 25 MGs to kill the flare. But it had nothing to do with the infusion. I had very very minor joint pain the day of my first infusion. Absolutely no Entyvio side effects since that first day (even on the days I have gone for follow up infusions).
Obviously there can be adverse reactions to any new drug you take. They monitored me very closely during the first infusion to make sure I did not have any. In fact the Nurse was scared to give me a new drug because I was so weak from constant flare ups. She was relieved to hear that I was being admitted that day (because the flare was so bad) so they could continue to monitor me throughout the night for any adverse reactions.
I am sorry to hear you might have C-Diff and/or CMV. My doctor is continually monitoring my stools to make sure I do not have C-Diff as well (I have never heard him check for CMV but it could be something he is monitoring as well). Obviously the symptoms can be similar to my Colitis and we would not be able to tell if the Entyvio is working if I had it. As far as I have been told it is impossible to have both Colitis and Crohn’s. Crohn’s can be misdiagnosed as Colitis, but you either have one or the other.
The side effects from Prednisone are horrible. Thats why I am trying to get off it as soon as I can. You are not alone in your suffering from that medication. It sucks!!!! I will take Imuran and Entyvio any day over prednisone. I do not have any noticeable side effects from them so far as I can tell. Long term I am going to have my doctor check my blood work to make sure it does not cause bone marrow suppression. However aside from that Imuran has shown to be fairly safe long term (especially at the level you and I are taking it at). Entyvio has no long term data on it besides the Gemini trials – but from what I have read about it I am comfortable with its safety profile.
I have been tapering off the prednisone slowly (5MG at each infusion) because I have heard that Entyvio takes a while to kick in. My doctor says from here on out we go down by 1 MG of Prednisone a week. We will monitor it very closely. He said if you achieve remission at 10 MG or 9 MG or 8 MG etc… and you cannot go any lower without flaring then we will keep you at those levels long term. He says that body produces 5 to 8 MGs naturally so at those levels the side effects are a lot less severe. He obviously wants to get me off it completely but he said if we cannot then it is better then being in a flare or getting off Entyvio only to find the other options less effective.
So how am I doing right now? Well all I can say is everyday that passes I say to myself: OK when are my symptoms going to return? This doesn’t make any sense at all. I should be flaring right now. But they haven’t returned. It is a strange feeling after being sick for so long. I really am knocking on wood and hoping it continues. My doctor says that I may never be at 100% but if we can keep me at 90% – 95% like I am right now then he can live with that – as can I!
My stools right now are semi-formed. No Blood. 1 to 3 times daily – mostly in the morning. Sometimes a little urgency, but nothing I can’t hold long enough to get to a bathroom.
Truly wishing you get better Joanne. I will keep posting for you. Please keep me in your prayers as well as I do not consider myself out of the woods yet =)
Chris
Hi Chris,
Thank you so much for the information and sharing all that you did. It seems that so far it is really working for you!!!
I am keeping you in my prayers and in my hopes for wellness. I understand how you keep thinking that it may stop working. If our friends could see us craning our necks down towards the toilet water – they would be horrified. For us everyday w/o blood and formed stools is a miracle.
Enjoy your health,
Joanne
Hi Chris,
I wanted to check to see how you are feeling. I had my first loading dose of Entyvio today. I hope you are doing well.
All the best,
Carissa
Hi Carissa!!
I hope your first infusion went good. I know you were nervous about it. My first infusion I was in such bad shape I couldn’t wait for them to pump that stuff in me.
I am still doing really good (1 stool a day in the morning). No Blood. I am down to 9 MG of Prednisone now.
Sorry it has taken me so long before I got back to you but I wanted to be absolutely sure that a minor flare up I had passed before I responded.
So like I mentioned I had a flare (About six stools over a 24 hour period w/ a very small amount of blood). The miracle part for me is that it went away as soon as I began watching my diet again. Like I mentioned in my previous post I do have trigger foods (Lactose, Starches, Raw Vegetables). Like I also mentioned I was eating whatever I wanted (for the most part) in whatever quantity I wanted since my first infusion. Diet has never been a cure for me, but I cannot deny that it plays a role in my UC.
As soon as I had that flare I started eating my UC friendly foods again (Grape Juice, Meats, Lactose free dairy, certain nuts etc…). I was also very careful in the amount I ate and the way I ate. The flare was gone in 24 hours. I trying not to be too overconfident just yet, and I still cannot be 100% sure as to why I am in remission, but I almost cried when I saw that flare go away so quickly after being sick for so long.
So if I could pass one bit of knowledge I gained on my journey with this new drug so far it is: Avoid your trigger foods if you have any.
I continue to decrease my dosage of Prednisone. I start 8MG’s this Saturday.
Chris
Hi Chris,
Glad to hear you are doing better! My first dose wasn’t so bad. I am still at a high level of prednisone (50mg!) bc my flare has been so bad, but they will start slowly tapering me at my next infusion (11/11). I am really hoping this works and was actually relieved the moment the infusion started. I finally feel like I have something that may help me.
I hope you continue to get better and will keep you posted on my progress. I know Entyvio is slow to work, but I hope and pray I see improvements. Especially bc I hate the prednisone! The side effects – moon face, mood swings, etc are horrible.
All the best and I am so happy to hear about your progress!
Carissa
Hi. I am new here and wanted to see if anyone has experience with Enytvio and C diff. I was recently hospitalized for a severe colitis flare (a day before I was supposed to start Entyvio) and was diagnosed with C diff as well. I have been on a heavy dose of antibiotics (flagyl and vanco) and 50 mg of prednisone for the past 3 weeks. Yesterday my doctors retested for C diff and the results were negative, but I am still on antibiotics. They would like to start me on Entyvio Monday, along with keeping me on a low dose of vanco. I am really scared, as I’m not convinced the c diff is gone and also worry that there isn’t enough data on patients starting Entvyio with antibiotics and a recent C diff diagnosis. Any thoughts or advice would be appreciated.
Hi Carissa,
I have never had C-Diff, but here are my two cents.
My Doctor half jokingly said not to travel overseas (obviously warning me against travelers diarrhea). He said he could not be sure about what would happen to me if I got some sort of gut bacteria while taking Entyvio (it being such a new drug and all).
That being said I feel a little more confident knowing that the IBD trials were the largest trials for any IBD medication ever (or so I have read). Something like 2000 people over a course of 2 years. I have got to believe that at one point they encountered someone with C-Diff who was on antibiotics. At the very least I would hope they factored it into their analysis of the drug before releasing it. If they didn’t I would be highly disappointed in the review process – It is a gut targeted medication after all.
Chris
Hi Carissa,
I picked up CDif and CMV in the hospital and was given the same antibiotics as you. It was decided to keep me on prednisone and Azathioprine until I am done with the vencomycin and have another CDif test and a scope with biopsy to test for CMV. Mayo docotors told me that w/o a biopsy there is no way to know if the CMV is gone.
If all is clear I will begin Entyvio.
Thanks for posting!!
Joanne
Hi Chris,
Thanks for the response! I just met with my doctor and we are going to start my first dose on Monday. While a slight risk, he feels confident that with a low dose of antibiotics I will be fine and that the more important path right now is getting my colitis under control. We talked about remicade but given entyvio is so gut spefic, he believes it’s a better way to start. Here’s hoping!
Hope you are doing better.
Thanks!!
Carissa
Joanne,
Thanks for the feedback! I feel for you. I tested negative for the CMV, but the C diff was positive. They have me on vanco and steroids right now, which seems to be doing very little. Of course, I am in the worse flare of my life, so maybe it is helping more than I think.
As far as the C diff and the vanco, my doctors are testing again tomorrow for the c diff even though I am on the vanco. They believe that if it continues to be negative while on vanco, I can start the Entvyio. It certainly makes me nervous, but they claim I am in a catch 22 bc they need to move me to a biologic and want to do it as soon as possible. It doesn’t seem that they want to wait to get me off the vanco first for the c diff. Have your docs expressed concerns about being on vanco and entyvio at the same time??
Thanks for responding. This is so hard to go through and helps when you know you aren’t alone.
Carissa
Carissa,
I am getting the colonoscopy and biopsy Nov. 4th, then will meet with my doctor on Nov. 11th. On the 11th we will decide the course of treatment- which will include Entyvio. By that time I will be done with the Vancomycin and on only 10mg of Prednisone, 150 mg of Azathioprine. My concern is that he wants me on the Aza and Entyvio – but I do not want to do that . I am having lots of side effects which the doctor thinks is all due to the prednisone. I think the Aza contributes as well. I continue to use the SCD diet for 1 meal a day and drink Ensure Complete for 2 meals a day.
The weird thing I am experiencing is cramping in my fingers and toes about 2 to 3 times per week.
Is there a Spa for UC’ers where we can go have support, a cooking school to help us learn to cook the SCD way, Gluten free ( etc. ) , yoga and meditation ( etc). If someone has a place for this – I am going!
How are you feeling??
Joanne
Hi Joanne,
I am hanging in there. Still on a heavy dose of prednisone which is giving me terrible side effects as well. But my flare has been so bad, they won’t even think about tapering me until my second infusion in Entyvio on 11/11. And they will then start to taper the vanco for the c diff as well. Not ideal, but I had to get started with the Entyvio ASAP.
I can say that I am seeing slow progress from where a was a month ago in the hospital – but unlikely due to the Entyvio and more likely the high dose of prednisone. But I still out of work and anticipate it will be a while. As I am sure you have experienced, a bad flare with c diff is a horrible combo so I just need to be patient.
I totally agree about the Spa!! How nice would that be??? The next thing for me to tackle is the diet. I am on a low residue diet still but need to start focusing in getting more nutrients. My weight is super low (despite my round face and bloated belly from the prednisone). Keep me posted on your progress. I will let you know how the next infusion goes.
Hang in there!!!
Carissa
Hi Carissa,
Just checking in. I hope you are doing well!! I am still doing very good. I might even be slightly constipated! Remember to stay strict to whatever diet is easiest on your symptoms. Good luck with your second dose on Tuesday:)
Chris
Hi Chris,
Thanks for checking in and the advice on the diet. I had my 2nd infusion this morning and it was so easy. I was actually excited to get the medicine!
Overall, I am slowly feeling better BUT I am still on the vanco for the c diff (they will taper me after my 3rd loading dose and pray it doesn’t come back) and I am just dropping to 40 mg of prednisone. So it is hard to say what is working. The next 4 – 8 weeks will be telling as I taper.
I’m still out of work, which stinks. But I was so bad going in that I need the time to heal, get my strength and gain some weight.
As far as diet, I appreciate the advice. I have cut out gluten (always makes me worse), lactose and raw veggies. I’m trying to figure out what other triggers I have. Process of elimination, of course. I find that sugar makes things worse – so that is something I am paying close attention to as well.
How are you feeling? I hope better each day!
Carissa
Hi Carissa,
I am glad to learn your second dose went well. I hope it all continues to go well for you!
Joanne
Thanks Joanne! I’m definitely tired today, but nothing too bad. How are you doing? I believe you were going in this week for additional tests. Hope all is well. Keep me posted.
Carissa
Hi Carissa
I had my scope and met with my GI this weel. They found “diverticuli”, inflamed rectum and illium. The Dr. said my colon was mostly healed. We discussed that Prednisone always stops my symptoms but a few weeks after I taper off the Prednisone my symptoms begin again ( 3 years of this). He wanted me to go back on Humira but I refused because it failed twice. He offered to put me in a research study of pig parasite eggs and although I have heard good outcomes with this procedure I declined because I might get the placebo and have all my symptoms come back. So I decided to start Entyvio (Vel.) and I am working to get my insurance to pay for it ( it will be approved – just need to get all the paperwork in order) . There is a Patient Assistance Program for this medication so I am applying for it ( I had P. Assistance for the Humira- only a $10 copay).
I hope it all gets approved ASAP because I am down to 5mg of Prednisone daily and I am very concerned I will have another flare when I stop this med. I am still on Azathioprine 150mg daily and have asked to get off that once the Entyvio begins.
I am experiencing fatigue, joint pain, sleeplessness and giant moon face! I am getting out and socializing, and even traveling a bit!
I fall off my SCD about once a week! It is difficult when traveling and going to restaurants with friends. Any ideas about this?
I do think the probiotics and SCD have truly helped my colon heal.
I am so glad to have found this website. I have been feeling so alone for so many years. I do not have UC or Crohn’s but do have Eosinophilic Enterocolitis. It is very rare and my symptoms are so similar to many of yours. They tell me I am the only adult in the United States with this disease and few others in the world. They are wanting to start me on vedolizumab. I am quite nervous, but also scared not to try. I am down to 100 pounds of nothing and struggling to survive. Thank you to all of you who write and have offered me more hope than I have felt in three years. Thank you so much.
Hi Christi!
Welcome to the website:) I read your comment about a week ago, but I have been so busy that I am just able to get back to you now. I had never heard of Eosinophilic Enterocolitis until you mentioned it in your comment. I can only say that I can soooo identify with what you are going through. When I was in the worst of my flares I could barely stand up without getting dizzy. It was like I was ninety years old. A 15 minute walk would leave me feeling exhausted. I would starve myself thinking that it would stop the bleeding but I would just continue to bleed out. I am so sorry that you are going through it. Please feel free to ask me any questions you might have about Entyvio. When do you get your first infusion?
I know that we are all thinking of you and hoping you find some relief from your symptoms.
Chris
Hey folks. So, had my third infusion last week, so that makes it 6 weeks on Entyvio. I have had a bleeding ulcer for almost 3 years and since the second day after my first infusion, I haven’t seen any blood. I got my first cold in 3 years, so I know the Entyvio has dropped the immune system down, but no more bleeding and a huge reduction in urgency is a huge blessing. I was allergic to all off the 5-ASA’s and was not comfortable with the remicade and Imuran side effects. So far, I’ve noticed a little less energey and little cuts from shaving or scratches on my arms and legs might take 50% longer to heal. The infusions are simple and I nap through most of them. Takada pharmaceuticals is the manufacturer of Entyvio and they have a copay assistance program that has worked amazingly. My GI here in Boise was part of the clinical trials and sent her folks to Seattle and Salt Lake City. She has said it’s not the cure, but the closest thing they’ve seen so far. Please let me know if I can also add to any of the great comments on here. Good luck to all.
Cheers,
David from Boise
David, I hope you are well. Please update us on your condition.
Hi Joanne. So glad to hear that you’re getting this med. For 2.5 years I had a bleeding ulcer that wouldn’t heal. SCD, Steroids, 5-ASA’s, Probiotics, Natural Remedies. 2 Days after my very first treatment I stopped bleeding. It’s been a couple of months now, and I still haven’t seen any bleeding. This med did it for me. My Doc here in Boise was part of the Clinical trials in Seattle and Salt Lake. She said either the med works, or it doesn’t; no in between improvements. The only real side affect that I have noticed is a fairly suppressed immune system. I hadn’t been sick from a cold or flu in over 3 years, but have now been sick twice in the last month. Very high fever and chills for both, as the body is trying its hardest to kill anything that shows up. I will take this any day over the UC for sure!!! Hope your story is like so many of us that have seen major improvements. Eat your healthy greens and Vit C would be my major input here. Good luck and keep us posted.
Cheers,
David
Hi David,
I have started to bleed again so I was put on prednisone and suppositories. I hope it stops it. So far it has not slowed it down.
Joanne
I had my first infusion of Entyvio two days ago. No Prednisone was given with the infusion (nor any other medication). The nurses at the infusion center told me that there had been no negative side effects or reaction from any patient getting this infusion. I tapered off all Prednisone just 3 days ago. I am taking 150 mg of Azathioprine (Imuran), VSL#3, Vitamin B complex, fish oil, Ensure Complete ( as replacement for 1 -2 meals), and still using SCD 1-2 meals per day. I am experiencing leg pain and sore muscles. This could be due to stopping Prednisone or side effects of one or both meds.
My GI wants to keep me on Aza for one year along with the Entyvio.
I stopped having all symptoms of UC for the past month – but that is typical for me. The scope I had Nov. 4 showed some inflammation in 2 locations.
I am hoping I continue to heal, and that this medication can stop any future flares.
How is everyone else doing with the Entyvio infusions?
Hi Joanne,
Good to hear from you.
I was glad to hear you had your first infusion without any side effects and that you haven’t had a flare for a month. I also love hearing you are off the prednisone. That is a big deal for anybody with this disease.
I have been doing really well. I just tapered down to 4 mgs of Prednisone today. My stools are semi-formed now with little to no urgency to go – which if I remember from my pre Colitis days is normal for me.I am still taking 150 mg of Imuran like you. I also take 2 tablets of Lialda (mesalamine) daily. I used to take VSL#3 but my insurance did not cover it and I wasn’t noticing a difference so I discontinued taking it.
Lately I have become scared I am going to screw up my remission by eating the wrong food so I do stay strict to my diet as best as possible. To help me with this my girlfriend now does all the food shopping :) It has helped me to realize just how much self pity and temptation the simple act of going to the food market generates for me. It is just not a safe place for people on restricted diets. As a side benefit she is a much better shopper than I am so we do save a lot of money;)
Anyway I hope your progress continues and please continue to keep us updated,
Take care,
Chris
Hi Joanne, I am reading all your posts. Thanks for keeping this thread active. I want to say I am so sorry that you have not seen any relief yet. I don’t know what to say other than you are in my heart goes out to you. Hopefully its just a matter of waiting for the medication to take hold – I noticed it began working for me around the time of my third loading dose.
Hey Guys,
Just another quick update. I just got back from the doctor’s office today. He was very happy about my progress. He said the fact that I was able to get below 5 milligrams of prednisone without flaring again is an important step. He said your body produces 5 to 8 Milligrams of cortisol (Prednisone) naturally so the fact that I am below 5 means that my body has begun producing it on its own again. He said he has seen a lot of people have problems at this point in their tapering and the fact that I have not is a good sign.
He really wanted to stress to me that Entyvio is not a cure and that I still have UC. He said a lot a young people will think that because they have not had symptoms for a while that they can stop their medications. He really wanted me to understand the importance of not getting in that mindset.
He also said Entyvio is the only drug in its class right now so there are no other options (unlike an anti-tnf which has a few different options). Thats why he highly recommended I stay on the Imuran (which he thinks will help keep entyvio from losing its effectiveness long term). Which I am definitely going to do.
All in all he said he could not make any predictions, but there is a good chance that this progress will continue over the long term. Crossing my fingers it does =)
Hi Chris,
I am so glad for you! It seems that the meds and diet are working quite well for you. I go for my 2nd infusion in two days. So far I have not noticed any blood , have formed stools, and I am only having BM’s in the morning. This is a big improvement.
I am still quite tired and have some leg and joint pain. This could be from going off the prednisone.
This is a shout out to all on Entyvio – please post and let us know how you are doing.
Thanks Joanne.
Still very scared of my symptoms coming back. It is like I have some sort of PTSD from it.
The fear does serve as a good reminder however to really just enjoy everyday to its fullest.
So glad to here you are noticing some improvements:)
Glad to hear you are both improving! I had my third infusion today and am doing better. But, I am still at 25 mg of prednisone (very slow taper) and on the vanco for the c diff. I do find that the infusions make me really tired and achy. This afternoon, I also noticed some nausea but I am not sure if it is related to the infusion or just something else.
Anyway, hoping the progress continues as they drop the antibiotics and taper the prednisone. I just don’t want the c diff back!
Chris – you are so right about the diet. It makes a huge difference.
Take care!
Carissa
Well, I got my second infusion of Entyvio on the 10th and began to see blood on the toilet tissue on the 12th. I spoke with my GI- we both thought it might be hemorrhoids ( I was hoping it was just that because I was having some rectal pain, no other pain or cramping). He offered me hydrocortisone suppositories or 20mg of prednisone. I took the suppositories.
By the 14th I was really bleeding and started back on Prednisone 20mg. I am still seeing blood, but no pain or cramping. I hope the Prednisone will stop the bleeding. I am still on Azathioprine 150mg and trying to stay on the SCD diet.
I am determined to get this under control.
I am curious if anyone else has had any breakthrough bleeding and were able to get it stopped.
Hey Cris – How are you doing?
Hi Joanne!
I am doing well. It has been interesting. I have been able to get off prednisone without flaring up. I am currently in remission – but I am feeling a little “flarely” lately (more urgency, Softer stools, overall weakness).
The reason being is I got ahead of myself. I have been doing so well that I started to feel like I could go out to restaurants and start eating normally again. What I found is I can get away with that maybe once a week. But as soon as I do that more I start to feel it.
So its a learning process. For me at least the medicine sort of lulls you into a false sense of security. I will still go out to restaurants every now and then – but for the most part I have to be strict with myself.
I saw that you had a previous post – sorry I did not respond. I am sorry to hear that you have not been able to get it under control. I would say that the change seemed to happen to me slowly. It happened differently only that I was able to get my symptoms under control with the prednisone. And so as I was getting my infusions I was in remission already. But I think a few weeks after my third infusion when I was low enough on the prednisone did I notice my symptoms beginning to improve.
HI Chris,
thank you for your post- it gives me hope that you continue to improve.
I am working to stick to the SCD, it was difficult over the holidays when I was with family. I have found local restaurants that will work with me on appropriate food so I am able to go out with friends.
I have had two iron infusions over the past 10 day because I was so depleted. I also had a DEXA (bone density) – my bone density has decreased.
This past week has been better as I got back on my diet, and focused throughout my day to decrease my stress.
I wish you continued health and healing,
Joanne
Today I will be getting the 4th infusion, i think. In the last decade+ experience, this is the medicine that is really giving some new hope and within few weeks, it is showing the real improvements. The nurse who came to my home for infusion also told me that she heard lot of good stories about this medicine. so try and see if this is right for you and be positive and i am sure in the next few decades, there will be something better than this and that is really what keeping me stay away from other options including surgery. The key thing i heard was – it just works on colon and not touch any other areas of the body including not screwing up the immune system.
ram2,
thank you for posting. it is good to learn about the expereince of others who are using Entyvio (Vedolizumab). It gives me hope.
I am so glad you are doing well and I hope you continue to do so.
Joanne
I think by switching to this new medicine I may got into other issue. I used to have controlled ACNE on the Face mainly. In the past all these bio medicine ( like Humira) I think it used to start slowing down the inflammation anywhere in the body and indirectly helped the acne to stay calm. As soon as I moved to this new medicine, it is my understanding that it just only works in colon and not do anything with other body areas. If this true, I may have to opt for 2 medicines, one works just in colon and other for the entire body. The dermatology dr said it is again some kind of overactive immune system or some type of auto immune issue. If this the case, even getting rid of the colon will not help the severe ACNE. Believe me, I rarely care for the acne issue, but this Is very painful and bleeds like crazy that I was unable to just ignore.
Just a quick update. I have had my 3rd infusion. I then needed an Iron infusion a week later and will need a second iron infusion next week.
I am on Azathioprine ( Imuran) 150 mg, and Prednisone taper (2.5mg per week)- currently at 35 mg. I also take two VSL#3 caps daily, fish oil daily, B vitamins daily, Ensure 1 to 2 daily, vitamin C 500 mg daily.
I feel exhausted, insomnia, painful shins, weakness and there is still some blood in the stool. I was told that it takes 10 to 16 weeks before it will be know if the medication is working. What has been your experience with this med?
Hi there!
I’m Kelly and I have had my first Entyvio infusion today. I am the first patient at my hospital to receive it and so I was a little nervous. So far, I just feel a little extra tired than usual and no other side effects so far. I have had UC for over 10 years with more flare-ups than remission time. My recent flare-up has been over a year with close to 20 bathroom trips and wil usually have an accident or two a day. Buying and wearing depends at age 38 was not something I envisioned myself doing at this age. My symptoms include bloody loose stool and severe pain when trying to pass a stool. I am on a strict diet and i still react within an hour to whatever I eat. It truly has dominated my life. My inflammation is so bad, my joints hurt and I am crawling by afternoon with a lack of enerfy. I have been on every med under the sun: Remicade, 6-mp, suppositories, enemas, prednisone, VSL#3, asocal and something else I cant remember. I truly hope the Entyvio works. I am scheduled to be “bagged” this coming June if the infusion doesn’t take. Fingers crossed!!
Hi Kelly!
Thanks for writing. Your story reminds me a lot about where I was before I got onto Entyvio. So obviously I am pulling for you because I know how hard it is to go through what you are going through. This drug has been giving a lot of people hope and I hope it works for you.
Keep strong. don’t blame yourself if you mess up, and try your best to see the silver lining in the everyday =)
I did not start to notice improvements until after my third starter dose. Fingers crossed for you Kelly!
Chris
Hi All Who Are Trying This New Med –
My son is up for his 4th infusion in two weeks and he has no improvement in his symptoms. Wondering if he should actually do the 4th infusion if he has not seen any improvements. At $2,000.00 an infusion wondering the chances of it doing anything.
What do you think? He is taking nothing else as I know a lot of you are taking other meds too. He is doing well on his diet and believe me he’s tried them all SCD, GAPS, AIP and now he is doing what seems to be working for his body after numerous food sensitivity testing and elimination diets. No gluten, dairy or sugar and minimal fruit. If he does fruit makes sure to eat away from gluten free grains. Organic meats and a lot of organic vegetables, and fats that work for him.
Got off on the diet…really want your input if you think there is a chance the 4th infusion will work, is it worth it if he hasn’t seen any change so far?
Thanks,
Lynn
I’ve done the diet, but my symptoms manifest in arthritis. My finger joints are fusing one by one, my hips and knees hurt and my ankles are bad. My knees, elbows and ankles have, at times, swollen to twice their normal size. I’ve been placed on Medrol, with all the wonderful side effects, which has helped.
My physician and I both pushed hard for Entyvio, but the prescription was rescinded at the last minute. I went on Humira for two months, which did nothing. They then approached this as an arthritis issue and put me on Enbrel. Two months of that and nothing. My rheumotologist and gastro both are now pushing for Entyvio, since the arthritis stems from my gut issues. Calm the gut and the arthritis will go away. FYI – I have zero gut issues, at least not in the typical UC sense.
Waiting now, which is the hardest part. In 6 months I have lost most of my muscle mass and feel horrible.
Some days I’m not sure what’s worse, the arthritic pain in all the joints or the UC part. I wil be making a call to my PCP to schedule an appt to talk about what I can take or do to relieve me of the burning joint pain. I have had UC for over 10 years and I really never put attention on the joint pain of it. I did however have to use a cane during my 2nd pregnancy bc my hips were out of whack. Unfortunately, UC is systemic and so our whole body seems to get attacked. I am due for my 2nd Entyvio on the 8th of Feb and pray some relief starts to show. I am so happy to have coin this site. UC really is an invisible disease and bottling it in only puts more stress on our bodies. I am going to research my area to see if their is a group of others like us that I can join. Talking about it truly lifts some unneeded stress from one. Thank you to everyone who shares their story. It helps me understand I am not alone in this :)
Hi Chris, Kelly, Rick and Lynn.
It is difficult to feel hopeful when there is so much pain, worry, symptoms that won’t quit or suddenly change. Chris asked in a previous post if UC has caused him to have PTSD. It was a good question because we all are hyper -vigilant about returning symptoms. Who wants to spend their time staring into the toilet looking for signs of blood, etc. ?
Chris appears to be doing well on Entyvio infusions and the care he is giving himself. I am having some success- but keep having break through blood in my stools that are weirdly sporadic and my GI tells me are normal for this med. after only 3 infusions. I will have my 4th infusion in 2 weeks – I am hoping that this will be the turning point for me ( I was told it will take 10 to 16 weeks after the 1st infusion to know if it will work).
I recently made a symptom and side effect checklist ( after speaking with the pharmacist who comes into my Dr. appts.). There are over 100 items on the checklist ( for three meds). Surprisingly I do not have as many symptoms or side effects as I thought. I also checked off when my stress level was high and noticed that my side effects and symptoms were more on those days .
I have added a food log, insisted through my primary care Dr. that I get referred to a Physical Therapist because my (DEXA ) bone density scan showed my bones are loosing density and because I am so weak, joint pain, and have leg pain that causes me difficulty walking and great difficulty going up stairs. I went to my 1st PT evaluation this week and was given a doable exercise regimen. I will meet with the PT 2x per week. I need that to get me motivated to take care of all of my body.
I also made an appt. with a massage therapist and I am making myself get out with friends to hear music and go out to eat with them. I eat my SCD at home before I go out if I know there will not be appropriate food at the restaurant. Then I just order basic soup and/or tea.
I am trying to get my life back so I am throwing everything at being well in all aspects of my life. Otherwise it IS PTSD-ish and the disease wins.
Lynn, have you contacted the Entyvio company or spoken with the hospital social worker? There is a patient assistance program to help pay for the medication. I did not qualify because my copay was under $50 for the medication and the procedure. I just saw the first billing to my insurance company: $12,450 for the Entyvio (1 infusion) alone, plus more $ to the infusion center so the bill for one infusion was over $13,000. We are all paying for the research of this new medication.
Keep moving forward in whatever healthy manner suits you and as so many others on this site have written- get your health care team together. It may include Yoga, massage, pharmacist, primary care doctor, PT, exercise, meditation, fun with trusted friends, socializing in a non-stressful manner, a trusted GI who listens, maybe someone who does wigs ( my hair loss is awful) and of course reading and communicating with people like us. Living with and trying to control this disease feels like a full time job right now. So, I am trying to make it a more pleasant job with more support.
Can you tell I am on Prednisone right now and very wordy? ; )
Hugs and continued courage to you all and please keep sharing your experiences about what works for you and what you want to change.
Hey y’all! I am so happy to say for the last 5 days, my UC symptoms have disappeared-like literally overnight! I forgot what a regular bathroom experience was it has been so long-haha!! My energy also seems up bc I am not feeling that sluggish feeling mid day!! I pray that I can thank my Entyvio infusions for this and it isn’t just a pause. I pray and have faith that this drug is able to help you all and others as well.
Keeping the faith!♡
~Kelly
Hey Kelly, I am so happy for you and how well the med is working for you. I pray for your continued success and getting back to the life you want.
Rick – I will be thinking about you and sending prayers for success with Entyvio. Please keep us up to date.
Joanne
Congratulations, Kelly! I start my infusions next week. My doctors and I are hopeful that this will be the way to reducing the inflammation that is playing havoc with my joints.
Rick,
I’m so happy you will be starting your infusions and I pray for you and everyone else that has been fortunate to be able to receive this med. I was sceptic at first I will admit, but not anymore!!! Rick, I know about those aching joints- no fun at all! That is something else that seems to have disappeared too. Entyvio seems to target the gut and in turn reduce our inflammation with it. Prayers and hope for you Rick and everyone else who will be starting or already receiving Entyvio. The last 5 days have really opened up my eyes of things I have been missing out on bc UC is so paralyzing to ones life and limitations.
Prayers and love,
~Kelly
That is encouraging hear, Kelly. I’ve been fortunate (as UC goes) to have avoided most of the really bad gut issues, so getting this approved for “arthritis” was a struggle. I’m anxious to start and encouraged by your results.
Just a quick update. My health has been slowly deteriorating with flares, fatigue, insomnia, and intestinal pain. i am thankful that my GI and his staff take regular phone call updates and decided something was off.
My Dr. had me tested for C. Dif and CMV. The C. Dif was negative but the CMV is back (I had been treated for this before and had a follow-up lab test that showed that it was gone) and it may be why the meds are not working. I go for another scope tomorrow for a biopsy to learn if the CMV has invaded my intestinal tissue. Once we know, a course of treatment will be decided. So, I have hope that once this is cleared up that the Entyvio may work for me.
Joanne
Thank you to everyone above who has posted about their entyvio experience. I get my first infusion next Wednesday. I have had sever left sided UC for 8 years with only one brief (about 6 months) remission from remicade. However, during that remission, I got cmv which took over my liver and nearly killed me. I have strange seriously adverse and debilitating reactions to as asacol, colozal, canada, rowasa, Lislda, prednisone, cortifoam and even uceris. I sm praying that entyvio will save me from needing surgery. I have urgency with about 15 to 25 episodes a day;most of which are just blood and mucous. I relate to the PTSD feeling. My anxiety has skyrocketed exponentially. It is 3:30 am and though I am utterly exhausted, I am wide awake with extreme joint pain and swelling and frequent bathroom trips….wish entyvio worked more quickly than what is estimated. I’ll post my experience here. It really is comforting to hear all of your stories.
Hi,
I just want to thank everyone for posting here. It has been interesting and encouraging to read through your experiences with Entyvio. I have my first infusion tomorrow morning so have been reading everything I can about this drug. I’ve had UC for 9 years (I’m 34). I was in excellent shape and health when the disease came on (working as a divemaster in Hawaii). I have been in one long flare ever since. I have had bad to severe reactions from all of the regular drugs ranging from colozol, asacol, lialda, canasa, uceris, prednisone, remicade (hospitalized- cmv in my liver). I have 32cm of diseased colon and really don’t want surgery! Entyvio is probably my last effort before surgery… I have tried all the diets to no avail and FMT. I will continue FMT and the specific carbohydrate diet while receiving entyvio treatment, but I won’t be taking any other “maintenance” drugs since I cannot tolerate them.
Hi Elizabeth,
You sound like you are sensitive to meds, just as I am. Oh, how ill they all made me!
Please let us know what sort of side effects, if any, you experience on the entyvio. I would be so interested to know. Hopefully, there will be none and it will work!
All the best…and great luck,
Bev
Elizabeth –
Best of luck. As far as i know, I’m the only person in my city (and surrounding region) on Entyvio. it’s lonely out here! I’ve had 2 infusions and have been approved for two more. The drug is insanely expensive, so if it doesn’t work, I’m off the program. This forum has been the only place I’ve found where other Entyvio users can talk about their experiences.
I made a mark on my calendar yesterday because, out of the blue, I felt better. Not just marginally better. Quantifiably better. We’ll see if this continues.
The infusion process is simple. No discomfort. The only “side effect” I noticed was that I was a little tired the next day.
Again – best of luck.
Is anyone from Canada here taking Entyvio? I just created antibodies to Humira, after taking everything else and failing….39 years of this…im fed up. My GI dr is at a loss…doesn’t know what to do…help…..
I had my fourth (and last) Entyvio infusion. Since my UC problems don’t manifest as typical, this was a gamble. My symptoms are closer to RA. The entyvio did nothing help that.
My experience’s were basic:
The injection site was sore for 24 hours or so, plus I felt tired. I also had a mild headache each time.
On to Plan B (or is it Plan H, I lost count). Road trip to a specialist in Cleveland to figure out something before my joints go to complete crap.
FYI – the cost per infusion (covered by insurance) was a few bucks shy of $15,000 each.
Sorry to hear you didnt’ get any relief Rick, I hope the specialist can give you some ideas, so many of us know what the joint pains are like. that was just about my least favorite thing to worry about after hearing the GI say UC back in 2008. The pains came and went for some time, but I can tell you that they can and will go away. I haven’t felt those creepy and painful joint pains in a few years now and I hope the same for you soon:)
–adam
Thanks, Adam.
Hi everyone, I have had UC for 5 years. Started out as ulcerative proctitis, and then went on to severe ulcerative pancolitis in a span of a few months. I have been in a flare for the whole 5 years (bathroom trips 10-20 times/day with blood) except for when I got pregnant, I went into remission during my second trimester. I have tried all the mesalamine drugs, suppositories, enemas, prednisone, uceris, and Remicade. Remicade was an absolute nightmare… the side effects and scars it left me with are aweful. It’s been 3 years since my last and only 3rd infusion and I’m still slowly recovering. Since then I have been deathly afraid to try any other biologic drug… But for the past 2 years I keep getting c-difficile infections… I’m on my 4th recurrence at the moment. I have tried FMT’s, but can’t seem to keep the c-diff at bay. My docs think it’s because the UC has my colon so flared up, it’s not an environment that the good bacteria from the FMT can stick with… so they think that in order for it to work I need to get the inflammation under control first. You would think prednisone would do the trick, but anytime I wean off of it I end up hospitalized with some sort of infection and high fevers and b back on antibiotics, which then lead to c-diff again… It’s a vicious cycle.
I would like to note that the only drug that has made any significant difference for me thus far is LDN (low dose naltrexone). It didn’t stop the diarrhea, but it stopped my bleeding for the most part. I went from a 7 hemoglobin to a 12 almost in 3 weeks.. it was miraculous. With the c-diff though I tend to bleed again, but no where as bad as I was in the past.
I don’t want to try Humira since it’s so similar to remicade, even though I know it has human proteins instead of mice ones… I am deathly afraid to start Entyvio, but I am going to give it a try and hope that it doesn’t cause me more problems. I will keep everyone updated when I start it, which should be within the next month.
Georgianna,
I am so sorry to hear about what you have been through. I have had UC for 20 years and started to flare really bad in 2010. My docs couldn’t get it under control and in October I was hospitalized with pan colitis and c-diff. They started me on a very intensive drug regiment to get everything under control – vancomyocin and flagyl for the c-diff, 60 mg of prednisone and Entyvio (in December). I started to taper off the vanco and prednisone in January and thought I was doing better. But, then I had an infusion in February and my symptoms came back with a vengeance. I ended up testing positive for c-diff again, and the doctors decided that a FMT was my best option. The good news was that when they performed the FMT, it appeared that my colitis had improved significantly – I only have a small area of inflammation and scarring. About 3 weeks after my FMT, I had another Entyvio infusion. Within days, I was terribly ill again — the c-diff was back! At this point, I had been sick for months and out of work for close to 6 months. I didn’t know what to do. The doctors decided, however, to perform another FMT, as long as I STOPPED the Enytvio. The general consensus was that the Entyvio was promoting the c-diff. That being said, they did reach out to Entyvio to determine what the protocol is for patients with c-diff. Interestingly, Entyvio doesn’t have a protocol. Anyway, when the performed the second transplant, my colitis was in remission – yay!
All in all, I believe that the Entyvio worked, as I am in remission for the first time in 5 years. I am disappointed that they took me off it, but I truly agree with my doctors that it was promoting the c-diff. And, I just didn’t want to risk the continued recurrence of c-diff.
It’s so complicated, and I really don’t know what the right answer is. But, just know you are not alone. And, things will get better and improve.
Best,
Carissa
Thanks for the info Carissa! I was worried about the entyvio and cdiff too… My plan is to remain on antibiotics for the cdiff for a while even during Entyvio treatment in hopes that it will keep it in check… Meh. I hope it works!
Carissa, how long were you off entyvio before you had your second FMT? And how many Entyvio doses had you had until then? Thank you!
Georgianna,
My apologies for the delayed response! My second FMT was 3 weeks after my infusion. I haven’t had an infusion since March. Hope you are well!
Carissa
Hello all.
I’ve been on Entyvio since September now. I haven’t had any bleeding and the urgency that intact prior to the med is just about gone. I just had my latest infusion on Monday and it’s been very smooth. I would recommend trying this to anyone, as the side effects have been so mild for me and others on it as well. It was the fix for my guts. I hope everyone else is doing well and pushing through.
In faith,
David from Boise
Has anyone taken Entyvio with Methotrexate? If so, did it help the joint pain? Did you have less or more side effects than others on just Entyvio?
My Dr. wants me to go on both drugs together, after my colonoscopy showed more severe UC then last year when he wanted me to go on it when Entyvio was first available. Strangely enough I feel better than I have in quite a while without bleeding or cramps, etc. and it seems crazy to go on these heavy duty drugs when I feel fine.
I have RA stiffness secondary to UC which I have had for 38 years. Last week’s colonoscopy showed I have Crohns too. I had an endoscopy which showed inflammation of my whole esophagus. Anyone taking pantoprazole for that? Supposed to start taking it this week.
Currently taken highest dose of sulphasalazine which helps the joint pain as well as UC. I’ m reluctant to take any heavy duty drugs after side effects to Remacaide which I took for 14 months 4 years ago and developed 100% antibodies.
My Dr. says that if I decline Entyvio ! I may need to consider segmental resection of my descending colon. Seems like a treat.
I was diagnosed with UC five years ago..since then my life has changed…i have had reacurrences several times. I have been on several medication to the point that my doctor has recommended that i have my colon removed.
presently I am on Apriso four tablet a day, Mercaptopurine one tablet a day, and uceris one tablet a day.
I started infusions of Entybio in January. I have infusions every six weeks.
I haven’t had any luck with Entybio.. was on Entybio and the other medications, along with prednisone. once I stop taking Prednisone two month later my symtoms came back. I had just had an infusion of Entybio three weeks before. I continue taking the fusions cause the doctors says that it take a few months to take effect.
I went back to Prednisone cause it seems like its the only medication that works for me…but I dislike the weight gain. I have been off of Prednisone for three weeks now and my symtoms haven’t come back. I am now also seen an accupunctures and taking a variety of herbal medication prescribe the accupunctures. I am hoping that they work and I become symtom free..I would like to enjoy my upcoming retirement without the UC symtoms…
I wish everyone luck who is taking Entybio. What works for some, doesn’t work for others. Don’t give up and keep a possitive attitude. Live life to the fullest and don’t let UC keep you down.
Hi, is there any way to connect with individuals who have shared their Entyvio stories?
Robin, your situation sounds almost exactly like mine (e.g., controlled UC with diet for years, sensitive to sugars and alcohol, came to a point where it was time to consider a biologic). If you happen to see this, can I ask you a couple of questions about your decision to try Entyvio??
Thanks!
julie.engebretson@gmail.com
If you have a facebook account, join the group Entyvio warriors. There are tons of people on there discussing their experience with Entyvio or answering/asking wuestions. It’s great
Congrats to all who had Entyvio work for them. I was never quite w/o blood and inflammation since November after my 1st infusion, then i got pneumonia. I was bombarded with antibacterial drugs and I crashed. 28 days in the hospital, and now I am on Remicaid, tapering down from 30mg of pred, and Lialda.
I am finally home form the hospital, where I hurt my back. So I am on tramadol for the pain lidacain patches on my back. As soon as I got home I set up myofacial therapy to reduce the tight muscles and have ordered a Tens Unit to use at home.
I am weak but determined to eat right and stay positive that this will work for me.
I have wonderful support from friends and family. I am very blessed to have such love and caring in my life.
Joanne
@Ellie Re: entyvio and methotrexate I am currently on both with great results. Read my full colitis story for more info
They semi diagnosed me with Colitis 7 years ago but could not tell if that was what I had for sure as I also had C-diff at the time. I was going to the washroom between 20-30 times a day with lots of blood. By the time I got into to the hospital for a scope 3 months from the beginning of my problems(Canadian health care you wait) they couldn’t tell if it was colitis but they put me on prednisone and my symptoms went away and put me on Pentasa daily. everything was fine and two years after my “diagnosis” I tested positive for c-diff which my specialist assured me I never had in the first place and was pretty sure it was colitis not c-diff. So at this point I lost faith in my doctor but continue to take Pentasa daily with no problems until summer 2014 so I figured I never had colitis and stopped taking Pentasa.
May 2015 my symptoms returned going 20 plus times a day with lots of blood. This time they got me a rush emergency scope and they determined I had left sided colitis 100%. They put me on Pentasa pills and Pentasa enemas this only made my symptoms worse, so they put me on 40mg of prednisone this did nothing. They admitted me to hospital and put me on solumedral(spelling) iv steroids for 5 days and my symptoms went away while in hospital but the moment I left hospital and went back on prednisone my symptoms were back full force.
At this point they recommend entyvio and methotrexate as well I was still weaning off the prednisone. I started taking methotrexate 6 days before I started entyvio and noticed my symptoms were disappearing before my entyvio treatment started. I have had three entyvio infusion and I have nothing but great things to say my symptoms are pretty much 100% gone and no side effects I don’t even feel tired the day of or after entyvio infusion(which is most common side effect) drink lots of water day before and day of which I do and the nurses believe this helps. I just finished weaning off prednisone one week ago. I have noticed a couple times in the last 3 weeks where you have one of those “oh-no” bowel movements where you believe your colitis symptoms are showing up again but that was it they never came back next movement was solid. From my experience @ellie I believe the methotrexate helped but it does make you feel like crap for a day or 2 after taking your dose and my immune system is definitely weaker. Plus you are not suppose to drink alcohol on methotrexate so it sucks not having that social drink or 2. From what I hear there are not many people on the the combo of methotrexate and entyvio and was told by the drug company that there is no proof the two work together but they rely on the doctor to make the call on what method to use. I really hate the way methotrexate makes me feel and I thought I was just on it for my first 3 infusion(which is week 0, week 2, week 6) to help entyvio take effect but my doctor wants to keep me on the dose of 15mg of methotrexate once per week until my entyvio treatment is done in may 2016 and also wants to keep me on methotrexate for the rest of my life at a lower dosage to control my colitis which I am very much against! Entyvio has been great their phone support and nurses are very supportive and are very helpful. You feel very comfortable at the clinics, I expected them to be like most health care places be crowed and have long waits but it is not crowed at all first time there was me and one other person next two times it was just me. I hope this helps
K: can you explain what you mean by “when my treatment is done – in May 2016”
Once you start entyvio, there usually isn’t an end date…medications are for life, unless you get your colon removed. Ive just had my second infusion and too many side effects for me so I think this is it.
@hannah
I’m glad you said something about the end date. My doctor failed to tell me I could be on this treatment forever and made me believe I would be finished in May 2016. I just got off the phone with Entyvio and they said yes it is more than likely that I will continue with the treatment to keep my symptoms away. I am ok with it as I have had zero side effects from entyvio but the one thing my doctor did mention she wants to keep me on for the rest of my life is methotrexate and this is a drug I do not like and have some side effects from(itchy skin, low immune system, feel like crap day after taking the pills)
Diagnosed in 09, salofalk stopped working after 1 year. Intolerant to imuran, prednisone stopped working, remicade did nothing. 10-15 bowel movements/ day, sever incontinence.
Started entivio in May/15, noticed improvement after 2nd infusions, near 100% after 4th. Drug is a godsend as I was facing surgery.
Jeff
What a long difficult route to this med. I am so glad that this treatment is working for you.
Jo
My 16 year old son has been on entyvio for a year. This was the last drug to try or it would have been surgery and it’s a miracle. He’s 100% better back to normal bowel movement the cramps are minimal had two bad flare ups in the one year but didn’t last more the three days. I have my son back and I’m so glad we tried this new drug. Did realize six months ago that the eight weeks was too long so now taking every six weeks and he’s doing so much better.
I have ulcerative colitis . Been on Entyvio for a good few months until it started working. My doctor said if there is no results yet then it won’t start working but I insisted that I would like to stay on it since options are so limited. Thank God it started working. On it for almost a year now. Entire colon looks clear of inflammation, little bit left in the rectum, being treated with canasa.