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Scary Remicade Experience

I am 24 years old, female, and I have had Ulcerative Colitis for almost 6 years.

Mainly proctitis.

I want to make a long story short but will say that I was never an unhealthy eater, firstly, but I do follow SCD now. My UC symptoms were lots of bowel movements (8 to 20 daily), lots of mucus, some blood, extreme urgency. I never was really in remission without prednisone. I took lots and lots of Asacol (15 daily at times), lialda, apriso, enemas, foam enemas, suppositories before playing with the scarier stuff.

If I had not been so whiny/embarassed the enemas and diet changes would have probably been enough. (Whiny about the enemas and lacking in time to devote to a serious diet).

I took Imuran/azathioprine and within a few months my legs were covered in hives, “drug reaction”, and dropped that. The rash cleared in a week, and I was freaked out about medications for a while.
I was gluten free, dairy free, soy free, caffeine free and did well for a while, but then this whole mess started when I was about to graduate from college – I started having a bad flare up, and I took prednisone so that I could have a worry free graduation ceremony. Then I traveled and with a lowered immune system I caught amoebic dysentery – that brought about a really killer flare up, even though I cleared the amoebic dysentery with targeted medications. The flare wasn’t going anywhere, and I really didn’t want to take prednisone again, so I finally gave in to Remicade. I was tired of battling, and it sounded promising.

I received 3 Remicade infusions total, the last one was Halloween of 2010. It was helping my UC. Not 100% normal, I still maintained gluten free, dairy free, soy free, caffeine free diet, and still I had a very sensitive system, and I still do.

But I was doing much better, and I planned to stay on it.

My infusions were fine, maybe I was a little tired that day, but otherwise no problem. Well, persistent yeast infections were the other major side effect. AND THEN, 4 weeks after my third infusion, one random day, I started to develop a pustular rash, everywhere. It was on my face, scalp, legs, arms, back, chest, stomach (not hands or feet). Within a day I knew I was having a drug reaction and went to the doctor. I was biopsied and put on antibiotics, told I was having stress-induced acne, not related to Remicade. It kept spreading daily, spreading as in more and more pustules were developing, I looked like I had really bad chicken pox. No improvement, just worsening. I was referred to more doctors, dermatologists and GI doctors. I ended up at Mt Sinai in NYC, with some of the best specialists, and was put on more antibiotics. They said I had an infection from my immune system being suppressed from Remicade. About 10 days in my mom flew in and stayed with me for weeks, the rash was becoming so extreme, I couldn’t wear clothes or really go anywhere except to doctors, she had to take care of me. It was becoming very painful, and it was changing, crusting over, flaking, it was terrifying, still spreading. I was losing weight, all the years with UC without any significant weight loss, but here I was losing 15 pounds in a matter of weeks. I was also taking lots of antibiotics and started flaring with lots of blood. Showering was burning painful, and pain lasted for hours after, but I had to stay clean. It took 3 weeks for anyone to figure out what was happening, by which time I was covered and unable to function at all – “neutrophilic dermatosis”, but not in a form they had ever seen. And they said that Remicade should be used to treat this, not cause it. It made no sense. I know there are accounts of people developing pustular psoriasis from the biologic therapies, but this isn’t that either.

Luckily, it seemed to disappear within a day of taking prednisone 50 mg.

I was still covered in post inflammatory hyper pigmentation all over my body for months, luckily that has cleared now.

I was supposed to take Prednisone for a month or so to clear the rash, and never take Remicade again. However, after 2 weeks when I started to decrease below 40 mg, the rash started to reoccur. I have since added high doses of Dapsone (which makes me very anemic) and SSKI (which suppresses my thyroid, now I have to take thyroid hormone too) in order to decrease prednisone. I still cannot get below 12.5mg. This is very unheard of. These are all high doses, and my doctors say they have never had to prescribe them like this. I also tried Cellcept which didn’t do anything. After 6 months, with urges from many doctors (I have had to seek many opinions) I decided to try Humira. They were convinced that I was allergic to something in Remicade but that Humira would treat everything. Well, the rash started to break through my maintenance formula after 2 doses of Humira, so no more Humira. Clearly it was the biologics that caused the skin disease.

To this day, no one knows exactly what it is or if it will ever go away, only that it is in the family of neutrophilic dermatosis.

People with UC that get “extraintestinal manifestations” may get another condition from this family, pyoderma gangrenosum.

Our immune systems are over-reactive, not only in our intestines, and medications that play with the immune system can actually worsen our confused immune systems.

I really wish I knew about SCD and other strategies before I experimented with these drugs. I follow SCD now, and I’m 99% symptom free intestinally. However, I’m also on prednisone 12.5 mg, and I can’t change that still, even though there’s nothing I want more than to be free of medications. I use diet and exercise to heal internally and also to battle the side effects of the medications I am forced to take. After years with colitis without remission, I swear this skin disease is much much worse. I really wish I had known how dangerous and experimental these drugs are… while this is very rare, I know I am not the only person on this site that has had a bizarre reaction to these drugs, although from what I understand from the many doctors I have seen, my reaction is one of a kind…

written by “Bad News Bear”

submitted in the Colitis Venting Area




rash, Remicade

14 Responses to Scary Remicade Experience

  1. Blake December 8, 2011 at 8:26 am #

    I had a similar experience with Remicade, but not as bad as yours. I had one Remicade infusion in November and 10 days later, the day after Thanksgiving, I broke out in a drug rash all over my chest, back, neck and face. I was supposed to get my 2nd infusion a few days after that, but after showing my doctor the rash, we decided not to do another infusion and insteas I had my colon removed 2 days ago for which I’m in the hospital right now recovering. The rash got itchy after a couple days, especially my ears, but did dissapear after about a week. I have pictures which I will try to send Adam to see if he can post on this comment.

    Remicade Rash on Back
    Remicade Chest Skin Rash

    Blake

    • Katya
      Katya December 18, 2011 at 5:54 pm #

      Blake, thanks for commenting. So awesome to hear that your surgery went so well. Happy healing and happy holidays!

  2. Sean Starky December 8, 2011 at 10:09 am #

    Blake brother hang in there, I go in on the 20th to get my colon removed.

    • Blake December 8, 2011 at 3:06 pm #

      Thanks Sean, just had mine removed on Tuesday and it wasn’t as bad as I thought it would be. The doctor told me I could go home tomorrow which is 3 days post op, pretty good recovery time. The bag isn’t as bad as I thought either although I didn’t realize how fast it fills up. It’s nice not to have to go the bathroom either.

  3. Don December 10, 2011 at 9:44 am #

    I was on Remicade for 1.5 years and I’m convinced it caused me to end up with an ostomy. The doctor said I had the worst colon he had ever seen. It was literaly black inside and looked like it just came of a grill. I would reccomend staying away from remicade if at all possible!!!

  4. Christine December 12, 2011 at 6:44 pm #

    Blake,
    How long do you have to have the bag for? You don’t think it’s as bad as you initially thought it was going to be? I’m about 1 step away from having to go on Remicade, and I see colon-removal in my future.
    Thanks for your help/advice!

    • Blake December 13, 2011 at 2:39 pm #

      Hey Christine, it really depends how long you have to wear the bag by what surgery you choose to get. If you get a 2 step J Pouch, you get the first surgery, wear the bag, and the second surgery your internal plumbing gets hooked back up and you can crap again. I think you probably have to wait 3 months in between the two. If you choose to do it in 3 steps, first is colon removal and ileostomy, wait 3 months, 2nd surgery they create the J Pouch and remove the rectum, wait another couple months and then the 3rd surgery would be to do the reverse ileostomy. I don’t think the bag is as bad as I thought it would be, mainly because I’m finally feeling good and if I have to wear a bag to feel good, so be it. I’m not sure how long I’ll wait before I get the second surgery. I may just wait 6 months or a year, depending on how I feel. I want to heal up 100% and try to bulk back up before doing a second surgery. I’m in no rush. Truth is, I’m kind of scared to get the J Pouch just because I’ve heard bad things about it, but on the other hand, I’ve also heard great things about it. I just don’t want to be stuck in the same situation as i was with UC by getting a J Pouch. Give Remicade a shot. I was really hoping it would work for me, only did one infustion, broke out in a rash 10 days later so I didn’t do the second one. Good luck Christine!

      Blake

  5. Hopeful and determined December 13, 2011 at 8:19 am #

    Dear Bad News Bear,

    My heart goes out to you having to deal with all this. No matter what my condition or reaction to medications I have been told that I’m “a rare case.” I don’t believe it anymore. Knowing someone who works in pharmaceutical sales, I’m convinced they (docs)don’t want to admit how bad these drugs are, they just want their kickbacks from the pharm. cos. One of my reactions that every doctor said wasn’t related but which went away within two days of stopping meds was extreme restless leg syndrome. I was having trouble sleeping at night because I would wake up with such bad tingling and pulsing in my lower legs. I also don’t believe that these drugs really benefit us in the long run. They just wear down our entire systems and make healing really difficult if not impossible leaving surgery as the only option. I’ve refused to take these meds and have argued with my doctor over and over. I follow the SCD, take 500 mg. Sulfazine (not to be confused with Sulfasalazine) twice a day, lots of vitamins and a probiotic from GI Pro in the morning, fish oil and boswellia at lunch and have found that my biggest offenders are sugar, chocolate, wine, and peanuts. Thankfully the longer I follow the SCD the more I loose my craving for sweet. I only use small amounts of honey and pure fruit juice when it’s needed. I usually end up cutting the amount of honey listed in recipes in half and adding a little water if the batter or dough seems too thick. I’m not cured but I maintain a relatively good quality of living, with some bad days and some really great days in the mix. I admit every day is an adventure. I still have ankles that swell, and some eye pain/headaches, light sensitivity some days, sometimes feel feverish or fatigued and get bizarre itchy patches or cysts that show up randomly and then disappear in a few days. All of these happened before taking any meds so I know they are part of the UC and not from the meds. I also have a lot of nightmares. Not sure if that’s at all related but I wouldn’t be surprised if it is. I keep a food journal and document everything I eat and drink, my potty experience that day, and how I’m feeling, listing any issues. Then I look at what I was eating the two previous days and can eliminate anything that I suspect affected me. The key, I think, is knowing your body well, researching for yourself and not believing everything the doctors tell you without question. UC is not a new disease and there were other treatments available before Remicade, Asacol, Prednisone, Humara, etc. Ask your doctor what he would have prescribed thirty years ago. If it’s something different, ask what the side effects are and if it’s still available. If it sounds worth a try ask for it. If he refuses ask why. Sulfazine has been around for thirty or forty years. Some people do react adversly to sulfa drugs but so far, I’m able to tolerate it well. I took a break from meds for about a month before starting this to give my body time to recover. I was in a flare and it was a miserable month of eating mostly just homemade soups and broth and fruits and vegetables cooked until they were limp. As I started to feel better I began adding other SCD legal foods in small amounts. This is all frustrating, I know. Especially when you are desperate to feel better and getting depressed. Hang in there. Don’t give up.

    • Katya
      Katya December 18, 2011 at 5:52 pm #

      Hey Hopeful, thanks for your comment. Luckily, my UC has been totally in control pretty much since all of this because I’ve had to be on prednisone for so long. It’s 12 mg now, so I know following SCD is doing a lot because I used to have symptoms again at higher doses of pred. I just can’t miss the pred or the other meds I take for my skin literally for a day, or else bumps start showing up everywhere.
      It’s a crazy thing and I try to deal with it, I think the toughest part is now the psychological and emotional aspect. I know medications caused this and I hate having to take more medications to treat it.
      It’s all ironic because I’m pretty sure I have UC from taking Accutane when I was 13… and now I have a really serious skin conditions from meds for UC.
      It’s difficult emotionally for me now because at this time last year I was very scared, completely covered in this scarey rash and having bloody bms… Dec 3rd to Dec 23rd, the night of the 23rd I started prednisone. A few weeks later when I was trying to taper is when we discovered that it wasn’t going away like everyone had assumed it would.
      This experience has been really traumatic at times, but I have also had the loving support of my family and boyfriend throughout and I am so grateful for that. I think I learned more about love through this experience than anything else in my life so far, 24 years of it. I think everyone with this condition probably has a similar outlook eventually, love from others, for others, and for yourself.

      I get acupuncture weekly with my naturopath who also oversees some other things I take: fish oil from nordic naturals, stinging nettle capsules, optibioflavanoids, l-glutamine, devil’s claw, milk thistle, curcumic, quercetin…
      Also, after months on SCD eating only cooked vegetables and being on a no sugar diet (no fruit, no honey) I now have transitioned to more of a living foods SCD diet. Mainly raw vegetables, some raw fruit. I juice daily always with cabbage and then other greens, beets, carrots, etc. Juice fasting has been helpful when I start to feel uneasy digestively.

      Anyway thanks again for your comment and best of luck to you as well.

      • Matrix December 18, 2011 at 7:06 pm #

        Hi Katya,

        If you are open to experiment I would like to suggest that you get your naturopath to suggest remedies that will rid the body of on viruses, bad bacteria, parasites and yeasts. It seems your focus is primarily anti-inflamatory which does not deal with a possible root cause (Elaine’s SCD hypothesis). From the list you provided I don’t recognize any of those remedies as being specific for bad bugs. Also may I suggest probiotics to rebalance your stomach flora. Accutane my guess is could have messed up your stomach so this is necessary. This approach may take 3-6 months to see progress but may be the missing piece for you to lower your dosage. It has worked for me 100% of the time to get me drug free along with SCD and drug therapy. Hopefully you see a similar postive change.

        • Katya
          katya January 6, 2012 at 12:33 pm #

          Hi Matrix,
          Thanks for your input, sorry I didn’t see it till now. I do follow SCD but I’ve imposed more limitations than the diet does on sugar intake and dairy intake, plus I’m vegetarian. I make yogurt out of almonds instead, I can’t handle casein in dairy. I have taken colloidal silver for antiviral properties, and since I’ve been on the diet and such, my literally chronic yeast infections are a thing of the past. I was doing more anti-parasitic stuff in the way of herbs, but it’s really tough on your intestines and known to provoke diarhhea in healthy people, so I stopped cause it felt more aggravating than helpful. My gut has been pretty much totally stable, but I’m on prednisone, which really promotes bad bacteria, and I’m stuck on it for now. It’s not for UC, it’s for my skin condition caused by Remicade. It is more extreme than I can describe when untreated, probably should post pictures to clarify what I mean, but I try to avoid looking at them so I can move on with my life. Suffice to say, stopping Prednisone isn’t an option for now. But if you have any suggestions on remedies I’d love to hear them.
          Thanks!

  6. Jim July 15, 2013 at 10:26 pm #

    Still having this problem?
    I have Crohn’s and had to quit Remicade after 2 years because of chronic bronchial infections and flu symptoms which were worse than I’d had in 2 decades. I was never healthy. So in spite of my GI’s protests I went off it and a month after my last missed infusion started feeling a lot better. I also went on a raw food diet which cleared up all my hemorrhoids and diarrhea very quickly. My terminal ileum flare ups went away completely, now all that’s left is two persistent ulcers in my lower right/left colon areas, which were almost gone from cabbage juice treatment when I slipped up and ate some meat and some cottage cheese and they came back with a vengeance. Now I’m healing them all over again, but am far more successful listening to my body and feeding it what our prehuman ancestors ate, what it was designed to process, only raw fruit/veggies (alkaline ph only) and cabbage/carrot juice daily. I have had some luck with probiotic fermented veggies as well, but in moderation.
    I hope you are doing better than you were in this post, best of luck to you!

  7. Erik Nelson December 13, 2013 at 7:38 pm #

    Thank you for sharing your story. I was given a UC diagnosis about ten years ago and went on Asacol which did not work. I quickly realized that the doctors know little to nothing about these conditions. I attempted to control my UC through diet for five years after but was never successful nor vigilant. A year and a half ago I ended up with two abcesses and a fistula. I went back to mainstream doctors and was put in azathioprine and remicade. I became sicker than I have ever been in my life and my Crohns symptoms were the worst ever. Amazingly, the doctors wanted me to stay on meds.
    I left the mainstream doctors again and began something called the Gerson Therapy. Blood and urgency gone within five days. I am adhering to the therapy strictly and do not believe surgery is in my future.

  8. Erik September 19, 2016 at 1:51 pm #

    I have a mild rash like that on my back and my arms from the remicade. It has been there for a couple months. What is the best way to handle?

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