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Concern about Biologics

I was diagnosed with UC twenty years ago. I have had no hospitizations or surgeries due to my UC thus far. I take oral meds (Budesonide, Asacol)as well as rectal ones (enemas, foam). I now have colonoscopies yearly. My last one was in December 2016 and I will have my next one in two months.

I am currently recovering from a really rough flare that included c diff. I am winding up a course of Vancomycin and an increase in my regular meds.

And some more about Joanne:

I am a very big sports fan, especially of baseball and football. The Los Angeles Dodgers have been my baseball team since I was a kid and the San Francisco 49ers are my football team!

I am the Vice President of a Little League and during the Spring season, I am the Manager of a baseball team of 6 & 7 year olds. I am moving up to the next division after Managing TBall for two years. Love the kids, sometimes the parents not so much! LOL!

One of the great passions in my life is animals as I have been an animal lover forever. I have been a vegetarian for many years due to my respect for animal life.

Colitis Symptoms:

I have been having a flare for the past three weeks but it’s finally calming down. I think the meds are kicking in. My flare included diarrhea, bleeding and mucus which has now stopped. I’m still having numerous bowel movements with some urgency but not as bad as before.

Ulcerative Colitis Biologics (And Concerns)

I have been taking 6 Asacol tabs and one Budesonide capsule daily when I’m “normal”. I also take iron, Vitamin D, B-12 and Vitamin C. I am now also drinking Boost.

With my current flare, my Budesonide was increased and I started using the Mesalimine enemas I always have on hand. Those have now been replaced by the Uceris Foam.

This current flare really wiped me out. I am exhausted, anemic and my nails are all breaking/cracking.

My question to other UC patients is, are you on or have you used any of the biologics that are out? My gastro doc has been trying to get me on one for the past two years but I’ve refused due to the side effects and potential “lymphoma” concern I’ve heard about. He’s recommending something called Entyvio for me that he says is specific for Ulcerative Colitis or Crohn’s patients in that it is “gut specific”. I’m worried about the potential side effects of that drug and how they might effect me. I’ve tried hard to manage my UC and I just try to roll with it and live my life. I don’t want to be a victim of UC.

Since I’ve had UC for twenty years, I’m pretty used to my lifestyle by now. I’m very careful with what I consume and I always make sure I know where the nearest clean restrooms are wherever I go.

My husband and the rest of my family live with my UC as well and they’ve all been great. Again, I’ve had UC for so long, they’ve all adapted to it. They know all about my Colos as well as my blood counts. They are all very loving people and good sports. They go with the flow and my Dad even cooks special food for me. I’m very fortunate to have them all.

I am also very fortunate to have a wonderful Gastro doc. He’s the best and I can always get in touch with him when I need him. After my first Gastro doc retired (whom I adored!) I went through three other docs before I was lucky enough to find my current doc.

Meds:

I’ve tried meds in the past that I’ve been allergic to. Those meds have had sulfa in them. I’ve had to stop them right away because of hives. I can’t say they worked or didn’t work on my UC per se, I just couldn’t take them.

written by Joanne

submitted in the colitis venting area



11 thoughts on “Concern about Biologics”

  1. Try FMT before you try biologics if you can. Stop the iron supplements, they are a really bad idea if you have uc. Ie. They feed pathological bacteria in the gut. Also there was a study recently around IBS and vegetarianism, basically saying that veggies experience it at a much higher rate than meat eaters. It’s probably because of the increased account of fermentable fibers in the diet, so you might want to look at a low fodmap veggie diet or low residue diet. I found that I couldn’t stomach a lot of veggies during a flare.

  2. I have been on Asacol, which then turned to Delzicol, then changed to Lialda, for about 21 years now after a terrible flare up that I could barely leave the house. These meds have helped tremendously for my UC, but I also have to take Iron due to low levels, my hair has thinned terribly, and my nails are also brittle with ridges. I wish there was a better answer for us being that we have to take these meds indefinitely. Really interested in seeing other comments. I wish you, myself, and all with UC a happy future.

  3. My adult son, who also has autism, was put on Remicade last December for his severe UC/Crohn’s. It was difficult to make the decision due to the potential side effects including the lymphoma. According to his doctors at Johns Hopkins there is a category of patients that are at risk for the most serious side effects and that is the 18-25 year old males who have never been exposed to the Epstein Barr Virus and who are on both the biologic and another oral immunosuppressant. To minimize the risk they only put him on the biologic and he does not take the immunosuppressant. It sounds like you will not be in the high risk category because you are a female and not that young adult age range. There are specific risk categories, ask your doctor about them. There are always side effects and potential side effects but with a little research I’m sure you will be able to make the best decision for you.

  4. I have had UC for the last 10 year asacol 6 daily I too was scared to try the biologica because of side affects but I started 2 months ago and I’m doing great I have no bloating urgency is half of what it was less loose stool days and I even live my life without seeking route to restroom. I’m still on Asacol till full affect of humaira kicks in but all and all I feel much better now the only side affect that I have is itchy injection sight for a few days after I pushed back for years about starting them now I’m glad I did haven’t felt this good for a long time

  5. I’m commenting regarding your question about trying Entyvio.

    I have had UC for 21 years now. Diagnosed at age 21 and I’m now 42. The first 18 years was proctitis and was well controlled with Canasa. I’d see a little blood and start on Canasa and within days the blood disappeared. I never had any other symptoms and I’d go 6 to 8 years with no bleeding and no Canasa. September 2014 I started seeing some blood again and started Canasa. This time it wouldn’t stop the bleeding. In October 2014 I had a colonoscopy and it showed 5 cm of inflammation. Within one week of the colonoscopy the proctitis exploded. I started having urgency, passing large amounts of mucous and more blood than I’d ever seen before. I became anemic pretty quickly due to the loss of blood. Over the ensuing months I tried Lialda, VSL #3, L Glutamine, Uceris and of course, prednisone. Prednisone was the only drug to give me any relief. July 2015 I had a flex sig and it showed moderate to severe inflammation all the way up to 55 cm. I went on another course of prednisone, kept taking Lialda, Canasa and added Rowasa enemas. This treatment plan kept things somewhat at bay, but any improvement was short lived once I stopped the prednisione. January of 2016 I decided to give Low Dose Naltrexone (LDN) and Curcumin a try. I started out pretty good with it, but after 6 weeks I started having severe arthritis and exhaustion and the UC symptons were still there. This was the first time I contemplated Entyvio because I liked the GI focus of the drug, vs the other biologic treatment options. The other drug I was thinking about was Imuran. My physician has been very flexible with my treatment plan, pretty much listening to me and letting me try different things. He was against the LDN (my family doctor prescribed it for me), but was ok with me trying Imuran, with Entyvio being the next step if Imuran didn’t work. I started Imuran April 23, 2016 and I started seeing some improvement. Unfortunately, on May 9, 2016 I woke up with Pancreatitis and I had to stop Imuran. Enytvio was my next step. I was approved very quickly and I had my first infusion May 19, 2016 and my second June 1, 2016. I started seeing improvement immediately. I had my 5th infusion October 20, 2016 and during November 2016 I was back to 100%. It took the full 6 months to get me there, but it does work and the only side effect I had was mild itching after taking a shower. I added 1 Claritin daily and the itching stopped within a few days.

    I am now 18 months into this and I continue to get the Enytvio infusions every 8 weeks and it is a very simple process. I had my 11th infusion September 20, 2017 and the medication continues to work very well for me. I wish you the best of luck.

  6. I went from using Humira for a whole year, to now using Entivio … I swear the difference is quite noticeable. I started having the infusion every 8 weeks to the current 6 weeks, and my quality of life is practically back to normal. Been on it for over a year and I’ve only had two flare-ups, probably because I got careless with the food I ate (I live in Louisiana, and there’s a LOT of spicy dishes here).

    I would recommend Entivio without hesitation. Good luck!

  7. I was diagnosed with UC 17 years ago and tried every drug imaginable over 13 years, before my gastro put me on Humira. After discovering I was allergic to both Humira and Remicade, we moved on to Entyvio. Infusion wise it was less painful for me than giving myself the Humira shots. I did my infusions every six weeks at home and the worst part is that I’m a horrible IV stick, so sometimes it would take a while to get it in. Unfortunately, after a year of only mildly better symptoms and then a colonoscopy that showed a lot of dysplasia I opted for the colectomy. Overall I never had any symptoms specifically from taking the Entyvio. I’m almost to my year anniversary with the bag and this is honestly the best I’ve ever felt.

  8. Joanne,

    Sorry about your flare. I am 61 and have had UC for about 18 years. I too love sports and coached baseball for about 8 years and now that my son is too old, I really miss it so enjoy while you can.

    I am also allergic to sulfa drugs. I also have had c Diff 3 times, but also have an awesome GI doc who works very well with me and says he acts more as a coach and advisor for what I want to do. I was on Imuran for about 5 years and it worked well for me, but due to the low probability, but scary side effects I tried to get off it about 2 years ago and put myself into an awful flare, one of the ones that turned into C Diff. I then tried to get back on Imuran but it didn’t work for me that time, so I had to turn to biologics. I wanted to try Entyvio, but the wonderful insurance company insisted I try Humira first (I believe because it is a shot you deliver yourself, so much cheaper than a hospital infusion). I was not too happy about that but the Humira has worked well for me for a year without any side effects. So, fingers crossed it continues and if it fails I am hopeful that I could then turn to Entyvio.

    I have also had 3 FMTs and I would also recommend that as your next option. It did work for me for a while, but this last flare was so bad that it didn’t take this time. I am a big believer that some day FMTs may work for all of us, and hopeful that would help us all avoid biologics. Good luck and stay positive, different things work for each of us, hopefully you find yours.

    Paul

  9. Hi Joanne. I was diagnosed in 2009 and have had 2 major flares, the 1st in 2013 and the 2nd in early summer this year. I have tried various meds including mercaptopurine (which kept me in remission for 3 years) and prednisolone (which worked during minor flares but didn’t help during the big ones). I am currently on a biologic called Infliximab (also known as remicade) and I now have infusions every 8 weeks with very few side effects. It works brilliantly for me and I went from 18-20 bloody toilet trips a day to 2 normal BM’s 12 hours after receiving the 1st treatment.
    It is scary when considering which drugs to try and the possible side effects but with this disease it can be so much about trial and error. It also depends on the type of flare we are experiencing at the time because they can be so different. My 1st involved lots of air, mucus, frequency and urgency. The 2nd was mostly tiny bloody stools (particularly straight after eating). Different things work for different people but when I was so sick in hospital last time I would have tried anything.
    I also have an amazing family, partner and support network and glad to hear you do too. That is half the battle. I wish you luck in your decisions and to your future good health. I hope my comments help.
    Kind regards, Lisa x

  10. Hi Joanne,
    I was diagnosed with UC over 30 years ago.
    Been the sulfur, prednisone, Apriso, Lilda, Canasa…yada…yada…yada, route, for too many years to keep track of.
    After my last flare, and enough weight loss, multi bloody bathroom visits, prednisone mania, sleepless nights, hyperactive days, know…the usual bad scenario, I finally started Humira. Anot her Biologic. So far, so good! I’ve had no real side effects, to speak of anyway. I’m back to a healthy weight, and most importantly to me, my stool is perfect now.
    I wish you all the best of good health, much continued support and lots of good luck with whatever your decision may be.
    ~Namasté
    Terri Schindler

  11. In reading you are drinking Boost , I have to state please read the ingredients. Boost can contain carrageenan which is an additive derived from seaweed and used in labs to induce UC in rats. When I was first diagnosed with UC I was using an equivalent product. I always felt lousy after…thought it was the flare. Until a friend mentioned this additive. To this day I look at labels and avoid anything with it. After Asacol, Colazal, Remicade (which gave me drug induced lupus), my 4th med is Entyvio. So far so good after 7 infusions and still in remission.

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