Hi, my name is Maria and I got diagnosed with UC back in 2013. I had a pretty good treatment plan with Lialda (started with 2 a day, now up to 4 a day for the last 2 years) and occasional Prednisone to battle flare-ups. I am now 44 and the flare ups have gotten more severe and longer. I am steroid dependent according to my GI Dr. About to start Humira this Thursday Feb 17th, 2022.
I am an athlete. Runner and cyclist, avid weight lifter since I was a teenager. I like adrenaline. I like to kick ass in anything and everything that i do. Other hobbies are reading, hiking, and spending time with my dog.
I am from Mendoza, Argentina, and I now live in LA. I work in fitness.
When Symptoms are Present:
When I flare up, I have about 10+ BM a day. It really messes up with my lifestyle.
Maria’s Story
I absolutely cannot stand having this debilitating Autoimmune injury but trying to live with it as easy as I can. It has changed my life because it makes me feel wounded or powerless sometimes, and i do not operate that way. I do not like to rely on drugs but I believe I have no choice at this point. I used to be a long distance runner and triathlete but nowadays I do not feel like I can be out practicing sports for extended periods of time without having some sort of episode where i need a bathroom nearby.
I am very disappointed that GI Drs have no training in functional medicine, alternative medicines or nutrition. When I ask, all I get it, it is not food related, it is your system, you need these drugs.
My family is super supportive. My boyfriend in particular, never makes me feel embarrassed even though I have had times when I haven’t made it running to the toilet. My mom and brother live far away so they do not really know much about how this disease works. I feel like coworkers do not understand it either unless they have a close family member that has it.
I am most concerned about starting a new medicine that is an autoimmune suppressant drug. I do not like to rely on drugs on an every day basis to be ok. I still believe there has to be a different way with alternative therapies, but cannot stop any drug treatment now or will go into a flare up. Even when I tapered to 10mg Prednisone I could tell my system got used to the bigger dose and relied on it, sadly.
Questions from Maria:
- My questions are: can I go to Walt Disney World two weeks after starting Humira?
- What to expect when on Humira?
- How fast does it work, on average?
I have tried:
Lialda (worked for the most part, since 2013)
Prednisone (tapering from 40 mg to 30, 20, 10, 5 over several weeks): works when on a flare-up
Budesonide: didnt work
written by Maria G
submitted in the colitis venting area
Hey hon,
I’m not on humira but I am on remicade it started with infusions really close together and then 8 weeks apart until we realized my body was not holding the medicine in my system as long now I’m on every 4 weeks. Remicade turned me around after the first two infusions. (Remicade is a different form of medicine similar to humira) you can go to Disney land 2 weeks after starting humira just remember to always wash your hands with soapy hot water before eating and wear a mask when around a lot of people. Yes the soapy water is to keep you from getting c Diff as it is easy to get when on an immune suppressant. I got mine from working in a grocery store and handling lots of vegetables
Hi Dianne
I’m on Remicade too & have been since Sept 2020. Been working good so far. Though I’ve noticed since mid-last year hair thinning & some eye problems. Have you encountered this too or other Remicade users out there?
Thanks, Diana
Hi, sorry you are dealing with this. I was also blindsided with this disease back in 2012. I went through a bunch of different treatments, Lialda, prednisone, Simponi, Humira. I too am in very good shape, exercise daily and eat healthy. After much research and trial and error I reached remission 2 years ago and have been good ever since. Here is my protocol:
Humira only worked for 7 months which I have researched and tends to occurs with most people.
• cut out dairy
• premium daily probiotic, preferably one specific to the colon, I use Garden of Life brand.
• premium prebiotic, 1 tablespoon twice daily when there is a flare up, then 1 tablespoon once settled down. I recommend Arabinoglactin, there is a lot of research about the prebiotic in supporting gut health. I actually head about it on the UC FB page years ago.
• Simponi biologic injectable 1 per month.
I would avoid any infusion treatment until you have exhausted all other options as there is not much in treatments after that. Lialda side-affects messed me up when I was on the highest dose so stopping that medication was very helpful plus it was useless after a year on it.
Hi James, I want to order the right Garden of Life Probiotic. There are several on Amazon. Which one do you recommend? thanks
Hello
My sympathies with you regards the embarrassing episodes , not making it to the bathroom in time . All of these I have experienced. It’s very hard & others don’t understand unless you tell them bluntly , the nitty gritty days of this awful disease .
I am against using heavy drugs .
I have been on budesonide foam which helps a bit with pain & sone less bleeding . Pentasa used to work for a while but now it doesn’t seem to do a lot .
I’m in a very prolonged & bad flare right now which came on due to an awful amount of stress & tiredness .
I currently take Ayurvedic medicine & that has really helped in the past. I see a specialist & take tablets daily . Also take probiotic & prebiotic . Currently trying cinnamon in almond milk. I don’t eat wheat but do eat ancient grains .
However as this particular flare has gone on for so long, I am trying cutting out grains . Been in that diet ( a bit like Paleo) for a couple of weeks. No obvious changes yet . My docs previously always said diet etc made no difference but obviously they are wrong ! I know the wrong diet /too much alcohol etc has a negative effect.
Try & believe that the natural medicine will work . Get lots of good sleep & eat well . You know the routine !! Best of luck . I heard recently, am in the UK that there are bringing out a vaccine for UC in two years . Am wondering if we can take it & whether it could help . Anybody know anything about it?
Love & hugs
Sally x
When I was your age mine was at its worst. I have had UC since 1982. I have been on prednisone this whole time except when I was pregnant in 1982.
Like I said I got really bad when I was in my 40s. Eventually about 9years ago my doc added mercaptopurine to my prescriptions. If your doctor is checking your platelets find out if they are high. Mine were extremely high. Almost 800. He put me on mercaptopurine and within a week I was good as new!!! Have been ever since. A bonus is mercaptopurine runs me $12 for 90 days!! It was a game changer.
I Dear , I am so starry for all of you guys Allah gave you recovery.. My son was diagnosed on 2014 . He was on Lialda and 6-MP. After 3 or 4 months was some changes in his blood work, but for GI doc was ok, but not for me . I stopped medication and started traditional treatments: 1) fresh organic turmeric blended 2 tablespoons 2) black pepper freshly grained half tablespoon 3) organic ginger fresh blended 1 teaspoon. 4) saffron pinch. Mixed them with water (16 oz ) 3 time a days. I prepared them weekly and keeping in fridge. If I have more blended turmeric and ginger in deep freeze. Other stuffs brobiotic, prebiotic, vitaminsD, healthy food no sugar. Bleeding only on 2014. Some time flare frequently running maximum 6-7 times Prednisone 40mg (40-30-20-10) for a month. We should believe on our creator. Good luck.
Hello, I have been exactly where you are. One suggestion. Seek out a homeopathic doctor. I was so bad, my GI dr was ready to remove my colon. I was on steroids, Remicade and others. All stopped working. I found a great homeopathic dr who treats me with food, meditation, natural medicine, etc. I am in a remission now and have been for 5 years. YES it has alot to do with food and health. I am so thankful for her. I recommend this path to all I meet with UC. Good luck and take care.
Hello mi saw your post ! I’m Sally living in the UK . I’m interested to know about the diet & homeopathic medicine . Are you in the UK ?
Thanks
Sally x
I agree Sheryl. Find an Integrative Medicine doctor or a Naturopath with years of experience. Never eat processed foods again. Keep a food journal to learn what triggers you and when. Keep track of stress levels as well. You know your body best but you myst commit and do the work yourself.
Hi Maria,
Thank you thank you so much for sharing your story.
I will try to take a stab at your questions:
Can I go to Walt Disney World two weeks after starting Humira?
I sure think it is a good possibility! I don’t think there are hard rules that you can’t do something like that, but might be best to base it off how you are feeling. If you are flying from LA that would be a nice several hour plane ride, no big deal I’m thinking. but let’s see how you feel. Your body will probably tell you if Walt Disney World is in the cards come two weeks later(or hopefully before you leave to go there..)
On a side note, I did some research into the iHaveUC archives a moment ago…and maybe this is one hell of a coincidence, or maybe this is actually a common Humira question…but back on July 10th of 2015, we published another UC’ers story like yours. The title is: “A Whole New World or Life – Humira, Travel, Colitis”
And I kid you not, the author of this story “Andrew B” wrote something almost identical to you…wow….:
“Now I am a week away from starting my Humira treatment and I am nervous, but if this leads to my life going back to somewhat normal, I give it a try. Some of my questions for other people with UC are about travel. I have a trip to Walt Disney World planned for the begining of August. I was wondering if there are any travel tips that I should know before leaving? Any help would be greatly appreciated.”
You can read that whole story on this link: https://www.ihaveuc.com/a-whole-new-world-or-life-humira-travel-colitis/
What to expect when on Humira?
I think this might be a bit individual. But here is a link that has a bunch of reviews by UC”ers who have used Humira:
https://www.ihaveuc.com/humira-reviews/
How fast does it work, on average?
I’ve read quite a range, from just a few days to several weeks to even longer before results were seen. What might help you out is to take a few minutes and give a read to some of the stories that are listed in the “Humira Category” of the site. Your story is listed at the top of this link, but that’s because your’s is the most recent. There are many many more you could for sure gain some insights by reading. Here is the humira section: https://www.ihaveuc.com/category/ulcerative-colitis-drugs/humira/
I wish you the very best no matter what decisions you make Maria, thank you again for sharing and best to your family in Mendoza!! and viva Chacabuco & General Alvear:))
Adam
Hey Maria,
It may make some feel better to know they are not alone, and you are definitely not alone. I personally have been a long term prednisone user. I am seeing a specialist to manage just my weening off of it as the program my GI doc had for me, even at a longer ween down, was not long enough and after I was off prednisone for a month, started prednisone withdrawals and my body felt every ache and pain I have ever had in my life. My body still responds to pred, which got me back on and I am still on it today, but currently on a long term plan to get off and will eventually. I was very hesitant to go the way of a biologic treatment. Many say it is the last option before removing your colon, and that may be the case, but there are MANY different kinds now and Humira is kind of the gateway treatment to try it out. My GI doc actually wanted me to start Entyvio, which is a biologic infusion every 8 weeks and is designed for people with UC. It treats the lining of your colon, which is very important because Humira and the other older biologic treatments are used for UC patients, but were designed for other types of inflammation diseases like rheumatoid arthritis. They may give you some benefit but I would not count on them long term. For me, we gave Humira a try for about 9 months and I thought things got better, but I flared again and moved to Entyvio, which kept me stable for a couple years. Entyvio also works fast when compared to other biologics. 2-4 weeks is reported when seeing benefits. It worked for me until I was diagnosed with rectal Chrohn’s, and was suggested I switch to Stelara which I did and is also made for UC/Chrohns patients. Basically, moving to a biologic to me is not a huge deal. The ones that I tried that were made for UC patients, have kept me stable and I have been able to be active in life and feel better. I am not on a lot of medication. Even the infusions were not too much to deal with. A 30 minute infusion every 8 weeks and I was done. Now on Stelara, it is like Humira and I give myself an injection once every 8 weeks. No big deal for feeling better. I share your frustration with GI doctors not having any input on nutrition. One thing to remember, UC and Chrohns are inflammatory diseases, so find ways to cut down on inflammation anywhere you can and you will help your body. You will get through it. I believe 70% of this disease is mental. A downward spiral, worrying about bathrooms, parks to go to, seats on the airplane close to the bathroom, this all builds stress, which feeds the UC creating a worse situation or anxiety poops and I call them. I hade my GI prescribe me low dosage Xanax just for when I would go on long trips or places I was unfamiliar with. Weird, but it helps remove the worry. I don’t take it regularly, but if I see a situation where I could build that stress and worry about poops, I take one. Good luck and you will get through this. You have lots of options, just do your research. New treatments come out with new discoveries, they even have a biologic pill coming out soon.
Hi Maria,
I’m on Humira 2 1/2 years now and I do feel like I got my life back. I also became prednisone dependent before starting Humira. I also use a nutritional shake prescribed by a functional doctor UltrainflamaX 360 along with fiber added and heavy duty probiotic Visbiome.Also the drug Asacol and another type of probiotic S. Boulardii. I know that sounds like a lot but I’ve had this disease over 30 years. I don’t let it stop me except when it was at its worse before going on Humira. I’ve tried everything and Humira did work for me. It took several months and I still keep up with shakes etc. I would plan that trip to Disney and try to stay positive. I avoided Going on Humira for 5 years as I was afraid of side effects, but finally did it as I was sooooo bad. Glad I did. That’s my story hope it helps.
Diann F
Hi Maria,
I am currently on Humira and I feel it has improved my quality of life immensely. I take 40mg via auto injector every 2 weeks. It took about a month of taking that and tapering off of Prednisone to feel the full effect. It has been about 1 1/2 years now and I haven’t had a true flare ( one small one treated with budesonide when my dad died) I still have some breakthrough diarrhea like irritable bowel but not the urgency or frequency of a flare.
I do not take any special precautions regarding my immune system other than getting vaccine/booster for covid. I don’t feel like I am higher risk for infection. I hope this helps you in your decision making process.
Hi Maria,
I’m not on Humira and my goal is to stay away from it, but I too have had doctors tell me “it’s not food, it’s your system.” In my experience certain foods can really bring on a flare or make it worse, for me it’s sugar in all it’s forms including from grains and fresh dairy with the exception of honey which I believe is a single molecule sugar and your body doesn’t have to do anything to digest it. While I have not been able to get off meds completely, by eliminating sugars, I’ve been able to greatly reduce the number of doses and strength. I also take a high-quality probiotic each day. A good nutritionist and/or homeopathic Dr. which I would think would be easy to find in LA should be able to help you. You might also want to research fecal transplants as I know of one woman locally who had that done with fabulous results.
Good Luck to you!
Treatment success varies. I’m sort’ve in an OK place with Remicade and Methotrexate. Not normal but dealable. Never wanted to take biologics but got forced into it w symptoms. Always scared of what these drugs are doing to me long term. At least I didn’t get bad symptoms till age 49
Definitely react to certain foods and a heavy meal always triggers bathroom need even if a safe food
Here’s the best advice you’ll get. Stop by the DISNEY Guest Services and register with them w Chrons or UC.
You can get set up for fast passes one ride at a time for your whole group. I think you’ll need to show proof of disease (I have a small card) nowadays. But it’s a special benefit for having a disability.
Hey Maria –
My 16 year old athlete son was diagnosed with moderate/severe UC 11 months ago. He is on Remicade and doing well. I found a private practice dietician who is all about functional medicine and has given us great advice on foods and supplements which I really believe has been our key into controlling everything. I am in north county San Diego which is not far from LA!
Funny – my hobbies are reading, hiking, and trying to learn to cook/bake for UC. Would be so happy to talk to you or share my sons dietician contact info with you. Or just someone nearby to lend an ear and bounce ideas off of. Feel free to contact me – maybe Adam can share direct contacts? Not sure?
I would highly recommend trying the Specific Carbohydrate Diet (SCD). After placing my son on this diet and using a probiotic from GI Prohealth, he has been in remission for 4 years. He is using Lialda two tablets once a day. Also as mentioned above, fecal transplant is finally growing in popularity. Some places will only use this treatment for C-diff patients. With all the research I have done for my son, for your Dr. to state that it is not food related, I would find a different Dr.
Hi Maria,
After my most recent colonoscopy and worst flare up my doctors were ready to put me on biologic medication. I was not ready to make such an big decision and really believe diet can help! After reading Adam’s ebook and doing some research on Selective Carb Diet (SCD), I decided to go all in and try it. I don’t know if you have attempted something similar, but it’s worth a shot! It does take a month or two to start seeing results, so you can’t get discouraged. You also have to be really strict!!!! I can’t stress this enough, there was a couple times I started to feel better and introduced some foods not on the SCD diet or had some added sugar and it made me feel absolutely awful and I lost some of the progress I made. Currently I am no longer on medications (prednisone, sulfasalazine) with this diet, I need to go back and get some bloodwork/stool samples done. I do still have some pain and nausea from time to time, but no more bleeding, no more urgency and I’ve been having normal, more solid bowel movements (haven’t had in a long time). I know this didn’t answer your specific questions and you may not have a couple months to try this diet and need immediate relief (I started mine while I was tapering down from prednisone so that helped). I wish you the best of luck on your UC journey, I understand how debilitating it can be, especially for an athlete. You’re used to putting your body through these extreme conditions and this disease makes you feel so fragile sometimes. I’m so thankful for the community Adam has created, it makes me feel less alone and I’ve received some great advice from the site.
Cheers!
I can’t speak to your question about biologics but I want to share that I have had great success with a probiotic called Visbiome. My GI told me about it. One packet a day has kept me flare free since starting (I’m also in Lialda – 4 a day). I get it on the Visbiome website. It’s a “medical food” formulated for colitis sufferers. I hope you are able to go to Disney World. I don’t know if this is a good idea or bad – but I had to fly from LA to Florida and of course was worried about not making it to the bathroom on a plane, so my GI told me to take Imodium as sort of a stop gap for the plane ride. It did help. Also low residue diet when in a flare. You can google that for more info – basically very low fiber. But my best advice is to try Visbiome if you can. Take care and best to you Colitis sister.
Same issues with me but worse. Please buy the book Breaking The Vicious Cycle. Do the diet and you will be on the right path to healing by avoiding inflammation
Hi Maria,
My story sounds similar to yours except for the adrenaline part. I’m more of a hiking, meditating, quiet sort.
I went through a similar course with doctors untrained in functional medicine too. I found Dr Snow who is a naturopath and I followed his protocol of vitamins and diet and I went into remission after 6 months. It’s been three years now and I’m symptom-free. I did have a one week relapse after having COVID but I went back on the program as opposed to the maintenance program I usually follow and am symptom-free again. I never thought I’d be able to eat popcorn again and now I can!
Dr Snow is located in Massachusetts and we did all our meetings in the phone and through email. He has lots of great information on line.
When I found him I’d just about given up. I felt so limited. I so got that when you said you couldn’t do all the things you enjoy. My life is mine again and I’m soaring. I want that for everyone who suffered from this.
Best,
Marysa
Hi Maria –
I hope you are doing well. I feel for you and all on this email chain.
I have ulcerative colitis and to control flares I would go on steroids as well. I also take Imuran 150 mg which will be scaled back in May 2022. I don’t think now that I’m on Humira that my doctor thinks Imuran is needed for me.
No, to Disney
I think you will have trouble timing any bathroom emergency. I would get on Humira and monitor and actually write down your bathroom history. I know this is terrible but helps to see hard evidence. I know crazy but I list some of what I ate, am I constipated do I have blood, am I waking up at the same time each night.
Make sure to get the Humira savings card so the medicine maybe a lot more affordable.
I have been on Humira since the middle of August 2021.
I can see a world of difference. I cannot tell you how quickly things changed for me, but my quality of life has been a lot better. I was diagnosed with UC 7 years ago and I’m in my 40’s. I take it every two weeks.
I feel the same that I wish there was a good diet that works for all of us.
Please reach out to me to discuss
I don’t mind sharing contact info
The big thing is we are all here to help and share experiences.
The only food I stopped recently was Chinese food. Maybe I just over ate it but I had to test the food while on Humira and the next day my bowel movements changed.
So no more Chinese food.
Hi there!
I was on Humira for about eight months, until my body developed antibodies to it and it stopped working. I can’t really tell you how long it took to kick in, as my Doctor put me on Prednisone before I started, and had me taper off over a two-month period. So he clearly expected it to take up to two months to kick in. As the Prednisone had me functioning better within a week, I can’t say.
But, to answer a question you didn’t ask, when Humira stopped working for me, my Doctor switched me to Entyvio. I LOVE IT! It started working the very next day after my first infusion, and has been working ever since (going on three years now). I strongly advocate that you give it a try if you Doc thinks you are a candidate for it. I thought the infusions would be a pain, but really it is just a couple hours of sitting in a chair in a pleasant room a few miles from my house, once every eight weeks. Pretty small cross to bear!
Anyway, good luck, and I hope you have a fabulous time at Disney. Don’t forget to visit the Tiki Room!………Jake iin Chicago
Same experience as Jake’s for me. I thought that Humira was gonna kill me though (I know I’m being dramatic). I had all kinds of side-effects from that stuff, plus every time I gave myself a shot, it felt like a wasp stinging me. Worst of all, Humira did nothing for my symptoms.
Enter Entyvio. It started working almost right away. No side effects, except maybe a little tiredness for a couple of days after the infusions. I’ve been on it for a couple of years now. No more Prednisone, Lialda, Canasa, Budesonide, etc, etc, etc…. I just hope it keeps working, and I’m worried about how much it will cost when I go on Medicare. I’m just thankful and enjoying all the good days I have now.
I think all of us would agree that this disease is a real curse, but it is possible to navigate a path. It’s just different for each of us.
Best of luck!
Try the SCD diet. It works. If you need some recipes, I’ll email them to you. I was on it for 2 years, no meds had worked. I had zero symptoms. I am not gluten intolerant or lactose intolerant but reducing those two things helped. I haven’t gone to any of the infusions yet because of the worrisome side effects.
Hi, I had issues tapering off prednisone, but you need to get off that if you can. Get a bone scan prolonged use of prednisone cause osteoporosis, my doc. didn’t want to do the scan, but gave in and I had osteopenia. I was able to turn it around with calcium. Remicade worked well for me, I got off it and take a supplement called SedaChron, which works well for me. Still have occasional flares, but they are very manageable. Got find a good Naturopath you trust, it’s total bs that diet doesn’t affect UC.
Hello Maria, great you live in LA – go see Dr. Gary Chen in Encinitas. He is specializes in UC and has treated thousands of people using Chinese herbs with no side effects. He helped me and I take no drugs. Just one visit then he will mail you herbs each month. I went to him in 2017 when I came down with UC, was in a bad flare and on prednisone. His treatment stopped my bleeding in 3 days and my diarrhea in 7 days. I’ve been great ever since.
http://www.naturalmedicinedirect.net
Best,
Dr. Dan
I have been in an active flair since March 2020- and I have traveled quite a bit as I didn’t want the disease to stop me. You can definitely go to Disney with some preparation.
Here are my travel tips
– Wear an adult diaper for plane and long stretches with no bathroom access
-Bring wipes and change of clothes in case of accident
-Get portable toilet for car/emergencies
-On days of travel I eat only meat, broth and soft squash or banana. No high fiber, dairy, sugar or caffeine. Sometimes I will only do liquids until I arrive.
-Leading up to a trip I do the intro phase for SCD or liquid diet to calm the flare before leaving.
-Cook as much as you can versus eating out, have access to “safe” foods
-Have a plan for if there is a bathroom emergency so you don’t have to be worried about what to do if it happens
I tried Humira, no side effects but also no results, so it was kind of a wash.
I am also active and find that shorter intense workouts are better. Also walk plus run seems to jostle things less than straight running.
Best of luck-
Hi Maria,
Thanks for sharing your story. I have had UC for over 20 years. Over that time I had been on high doses of prednisone while trying to control bad flares that lasted for months. I agree with others that while prednisone seems to be the best/only drug to stop a severe flare, it is a terrible drug long term. In addition to the bone issues people mentioned (I am also very active in my workouts which I believe helps control UC) prednisone plus my trying to regain strength too aggressively is at least partly responsible for a torn bicep tendon and subsequent shoulder surgery. I hope to avoid prednisone for the rest of my life! Imuran worked for me for several years, but when it failed about 4 years ago I went on Humira. I too was afraid of side effects, but I’ve been one of the lucky ones, it worked for me almost immediately and I have been flare free since then. I take a shot once every 10 days. Standard dose is every week or 2 weeks, but my gastro and I have worked out that this schedule is best for me. I also agree that diet is definitely involved in UC. One of the more devious aspects of UC is that what seems to work for one of us doesn’t necessarily work for all. Keep researching, especially this website, and see what works for you. You’ll get there and best of luck!
I have had UC for about 30 years. You should try indigo naturalis. Made a huge difference for me. Take care!
I agree with Sally. I was diagnosed with UC in 2015. After taking prednisone for a month and then quickly reverting back to being inflamed, I started regular acupuncture and chinese herbs (“Evergreen GI Care (UC)”). I then worked with local nutritional healer on strict dietary changes (no sugars, grains, raw veg, etc) to reduce inflammation and clean out my system. This disease also needs daily STRESS reduction techniques: breathing, sitting still, gentle yoga, calming nervous system). I now take a potent probiotic named Vizbiome (expensive but worth it). It used to be called VSL#3 but when they sold that co, the buyer chgd the formula. I take Vitamin D3 (2000 IU liquid drops) and Cod liver oil gel cap daily for omegas. No injections. No infusions. When my Gastro doc told me changing my diet didn’t matter, I never saw him again. (He moved on to work for a Pharmaceutical Company). I have flares here and there and manage them. When I cheat (drink coffee, have a beer), I know I am going to pay. Be strong!
MARIA, hi myname is Kevin .Iam a retired construction supervisor in pennsylvania, USA. I have been on humira for five years.Iinject in my thighssticking to the grids alternating legs each week .I found stomach injections too painful.In the past five years i think i had 3 flares .During flares i was prescribed uceris spray foam nightly for2 weeks, sometimes i took canasa supositories, .I inject weekly after 1year my humira levels needee to be boosted so i was prescribe the40mll injection plus alpurenal & azathioprine.Humira for the 5 years made me feel almost normal.Itake 1000mg of vitamin e& milk thistle extract you should keep an eye on your liver.Humira was a life saver but recently, i`m62, i had my colonoscopy it was not good .my gastro doc saidhumira is just not working in me any more.Thenext part of this jouney is to take a newer drug called zeposia.I have been married for30 years, my wife tries to understand but she thinks she can fix me .latly i have increased my supplements to 15 with 2 probiotics .I have hadliver ct scans & mrismany many blood& stool lab test it`s not easy but there is always someone worse off .I have been with Adam`s websitefor 12 years, this is my first correpondence.Ihave alot of experience, feel free to email me .i am so thankful for Adam and this site. stay strong, be safe Kev
https://www.ihaveuc.com/advice-humira-users/
Sent from my iPad
Hi Kevin
Thank you so much for your note. I started Humira about a month ago. 4 injections first dose, then 2 in 2 weeks, now I’m at one 40 ml injection every other week. I haven’t had any flares so far. I also tapered off the prednisone test I had been taken since December. I hope this works. I feel I am not confident giving myself the injection yet. I do it on my upper thigh too and I think it’s been giving me skin reactions, redness and itching. I never had live training on how to do it, just a nurse via face time. I have noticed I get acne since I started it also. Was getting horrible headaches but I think it may have been the withdrawal from prednisone. I wish I didn’t have to use any drugs at all, honestly.