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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Rash while on Remicade....


09-28-2010, 06:58 PM   #1
Lisa
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rash while on Remicade....

I know I have posted here before about this gosh darned rash I have had since getting strep in the spring.....

Has anyone else developed any type of rash while on remicade? I see in the warning info to notif if any skin conditions develop.....but, I have mentioned this to my GI doc (and she has seen it) - but hasn't had any input on it.....neither has the other GI doc who deals with all the other Remicade patients at the hospital (I'm the only remicade pt my GI has - she didn't want to give me up!).....

I'm still dealing with it- it seems to get a bit better, then back...my arms have new spots breaking out, my back has hypopigmentation so I look spotted.....belly basically looks AWFUL with red raised areas and fine scaly/dry skin...yet the biopsies said 'eczema'!........now where is that darned 'grumpy' sign?!?!?!

:grumpy:
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
09-28-2010, 08:22 PM   #2
glum chump
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Hey Pasobuff:

I just started on Remicade and while I don't have exactly what you've got going on, I do have bumps all over my arms, shoulders and back that look like heat/diaper rash. And it's itchy.

When I was on Humira, I had a more intense skin reaction called Lichen Planus. It started on my belly (where the injection site was) and is all over my legs, belly, arm and lower back. I've been off Humira for two years, but the skin stuff persists, although it has lightened up a lot. Like you, I too looked spotted...and rather than red, mine is a hideous purple/chocolate brown colour. My three-year old friend calls them my "love bugs" and he's the only one who seems to be infinitely fascinated by the hideous growth spots!

My doctor sent me to a dermatologist, thinking it might be psoriasis or eczema, and after the diagnosis, the dermatologist sent me for long wave ultraviolet light therapy. It did not do much good, and seems to be slowly going away on its own.
12-12-2010, 12:15 PM   #3
kslade
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I have had 3 Remicade infusions, and twice now I've developed some sort of rash. The first time, it was little white bumps that were extremely itchy. They kinda looked like mosquito bites but without that little dot in the center. Due to this, and other side affects that I had, I was put on Benadryl and Tylenol pre meds. My second infusion was fine, but then about 1 week before I was due for my 3rd infusion my face broke out into a red rash. This time it wasn't itchy but it was bright red and flaky. The only change from one to the other is that during my first 2 infusions I was on prednisone as well. For my last infusion I wasn't on the prednisone. I hope this doesn't mean that I will need to go back on Prednisone I have just lost the 10lbs that I gained while on it.
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12-15-2010, 04:19 AM   #4
crazycanuck
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Im done 3 infusions and just recently my girlfriend told me my back is going spotted red. So I looked and it is itchy but not raised or bumpy just red and kind of dry. Not sure if remicade related or not but Ive never had anything like that before.
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01-04-2011, 10:01 AM   #5
dustinsmom
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My son had his second treatment on Dec 17. Aprox 10 days later he developed an itchy rash on his chest and back. It looked almost like scratches or lines. It also looks like when blood rises to the surface of your skin. Not raised or anything. It has been moving and now he has it on his leg. I asked the pharmasist and she suspected serum sickness. I have called our gi and they are thinking the same thing. Now we are waiting to see the GI. He is due for his third treatment in 1 week. I have read that if you have this kind of reaction that you would not continue on the Remicade. The Remicade has already done wonders for him as far as his crohn's goes he is a different person. It is like a miracle drug . Too bad it doesn't come without side effects.
01-08-2011, 08:05 PM   #6
NEW
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My daughter developed a rash on her face for the first time during her second Remicade treatment. It looked like she got flush all over her face. It quickly went away and has reappeared from time to time over the last two weeks. Last week it came back again all over her face and one of her ears became bright red. She happened to be in the hospital at the time and the doctor noted it but said it was a normal reaction to Remicade.
01-08-2011, 10:02 PM   #7
pleite82
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Are you on any other meds? When I was put on Imuran while on Remicade and broke out. If they think it is eczema then it may be. After being on Remicade for about a year I started getting eczema and it is common for Crohnies.
01-09-2011, 08:15 AM   #8
Lisa
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nope, no other meds.....the pattern and time of flare of the rash met the symptoms of gutatte psoriasis.....thankfully most of rash is gone now with a few stubborn spots still there.....
01-09-2011, 11:05 AM   #9
pleite82
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Make sure you see a dermatologist and maybe they will have an ointment for you to rub on. Unfortunately sometimes you just need to see someone who specializes in skin in order to fully clear it up.
01-09-2011, 11:39 AM   #10
Lisa
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I've been seeing a derm for over 2 years.....they are the ones who did the biopsies.....I have a visit on the 19th too for a follow up.....

I've been using 2 different ointments - Clobetasol (strong steroid) and hydrocortisone .2%.....however, most of the rash cleared AFTER I stopped using the creams (were really thinning my skin from prolonged use).....again, giving me cause to think it IS psoriasis and not eczema.....gutatte has been reported to clear up on its' own months after first manifestation (about 6-8 months for me).....
01-10-2011, 09:39 PM   #11
dustinsmom
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Just went to see our pediatric gi today and she said that my son had a delayed reaction or "serum sickness" after his second Remicade infustion. He can no longer have it and so we are going to give Humira a try. I hope it will work out. The remicade made such a difference for his crohn's . This reaction started 10 days after his second infusion. He is now taking prednisone and benedryl to help with the rash and itch.
01-10-2011, 09:57 PM   #12
vonfunk
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I had a rash during my second infusion, but as it turns out I was allergic.
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01-10-2011, 10:06 PM   #13
Ian
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That's a real shame, it's one thing for a drug not to work but another for it work brilliantly only for it to have intolerable side effects. That's truly unfair.

I really hope the Humira works for your son! If it does it's probably better anyway, a quick injection beats the hell out of sitting in a hospital for 4 hours! Although to be fair I did get some studying done during my infusions lol. Boredom makes you resort to anything
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Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

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Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
01-11-2011, 08:24 AM   #14
dustinsmom
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Thanks for your reply Ian. I see that you have also taken Remicade but are now on Humira. Did you also have a reaction to the Remicade? How are you liking the Humira?
01-11-2011, 09:05 AM   #15
Ian
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No I didn't experience any side effects. When I had Remicade almost a year ago, NICE (National Institute for Health and Clinical Excellence) were only allowing it to be prescribed to treat acute symptoms, so once my flare was under control I wasn't entitled to the drug anymore. I only had one course of 3 infusions. Things have changed since then and you can now have it prescribed long term (8 week infusions), but because I'm away at University I think my Doctor went for Humira this time because it's more convenient to have meds delivered and administer them myself than coming home every 2 months. Just hoping Remicade will work again if I need it in the future, I keep reading things about it being less effective the second time around because your body recognises the antibodies and destroys them :/

Only had my initial load-up injections of Humura so far, next one is on Friday. No side effects yet and I've already noticed an improvement (although my flare was only mild to begin with). So I like it a lot so far! I hope your son has the same luck
08-02-2011, 08:34 PM   #16
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About 1-2 weeks prior to Brandon's infusions he is getting skin lesions. They look like mosquito bites but aren't, they get puss in the middle. The doc hasn't seen them yet, but didn't seem alarmed. He also gets a mildly raised heat type rash that comes and goes on his back. Also the abdo pains come back around this time. He is on 8 week intervals of Remi and Asacol and Omeprazole. Anyone else experienced this kind of skin rash?
Trina
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08-17-2011, 06:41 PM   #17
Saphira
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So we saw the GI who thinks it's mosquito bites. Funny how the mosquito's only bite him on the legs (not arms) and only about 10 days before the next Remi infusion? He did agree to send Brandon to the Dermatologist. We saw one, who didn't have a clue, he just said he's on immuno suppressants, and has infected sores, maybe they did start as mosquito bites...
I'm losing faith in Docs..
03-06-2013, 03:14 PM   #18
JoFowler
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I have noticed a bit of a rash on my chest, neck and back. Tiny bumps that I scratch, though it's not overly itchy. Just in the last week.

I have had my three loading doses and was scheduled for my first 8 week dose today, but had to defer it for two weeks due to being on an antibiotic.
04-03-2014, 11:05 AM   #19
Kerri24
 
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Hi, well there's lots of discussions on this, but the 6 or so I opened looked pretty dated. So let's try this again.

I've been on Remicade about 3-4yrs (try not to think about it) First real skin side effect was extreme itching!!! All over, very bad. Looks like everyone else the solution to this is take a Zyrtec every day, which actually works, cause if you miss forget it!! BUT this does not help with the rash, that came after. I have a mixed assortment of skin issues going on, which I've seen mentioned in different posts. Dry patches, mainly on face, sometimes red, scaley - don't itch but peel, looks awful. Dry patches that look like small grouping of dots usually in a circle formation that get larger, can itchy badly but not all the time. Large red patches that itch, and then raised dry patches that itch on and off. Effected areas are mainly my arms and legs, moving on to back and shoulders. When coming out of the shower all of them are very red! and the spotted assortment makes you feel like a leper. How's that for an assortment!

This is not eczema or psoriasis, they are over active auto immune issues, Remicade suppresses the immune system and these issues go away, I know I have had those and all areas cleared up.

I've been biopsed, scrapped and nothing comes back with a diagnosis. I've tried every type of creme and have spent a lot of $$ going to the Derm and on scripts to address issues with nothing working. She's stumped, so next step is a Derm who specializes with IBS skin issues, he's not close by but may have to give him a try. Told my GI I'm sick of trying to treat spots I want it to end!!!

Anyone get a firm diagnosis or treatment plan yet????
04-22-2014, 02:33 AM   #20
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Hi Keri24,

I have been getting Remicade for almost a year. Prior to October, I would get IV Prednisone, and IV Benedryl. In October, they dropped the prednisone as I was fully weaned. In December, my doctor asked if I would like to try claritin by mouth instead of the IV Benedryl. This suggestion was so that I could drive myself to my appointments. I took the claritin and 15 minutes later they started my infusion. In seconds, as the infusion was going in, I started a red rash spread around the IV site, and then an itching like I have never felt before. I was in so much pain. So, they stopped, gave me the 50mg of Benedryl, and I was fine. Up until that point I had no idea that other folk got rashes or itching. Do you think this might be something you could try?
04-22-2014, 09:31 AM   #21
Kerri24
 
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Hi Maggiesfour,

Unlike you I don't have a direct reaction from the infusion itself, thankfully! I don't need Benadryl, again thankfully, my skin reactions are all ongoing side effects from being on Remicade. (GI confirmed) I was on a steroid, Solu-Cortef, in conjunction with the infusion to help with long term Remicade treatment. Basically they found your body can build up anti-bodies to the Remicade and hinder it's effectiveness so being on the steroid can help the Remicade be more effective by stopping your body from fighting it keeping it effective at the same dosage. (my laymans summary ;0) Since the steroid helped keep my immune system in check further the skin rashes got much much worse. Finally got my GI to agree to stop the steroid, have had one infusion without, and the skin rashes have gotten "better" but not gone - yet! And as proof my immune system kicked into higher gear I've gotten a couple of psorisas patches LOL, A girl just can't win!!!! Getting more concerned as warmer weather is on it's way, last summer the heat made my spots very active, itchy and red!!! ughhhh......
04-22-2014, 11:20 AM   #22
maggiesfour
 
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Hi Kerri24,

I am so new to the game here, but have you tried homeopathy? That will be able to get rid of your psoriasis, or at least put it in remission for a long time. How does the rash fare as you get closer to the treatment? Do you notice a difference? With less remicade in your system, does it make a difference?
04-22-2014, 12:02 PM   #23
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Hi Maggiesfour,

I never had a major issue with the psoriasis previously, mainly was in my scalp now for the first time showing on my arm. I've had psoriasis on and off my whole life since I was very small. I'm treating it "ok" for now with Cortizone cream, hoping as my body balances the med changeover it goes away. As I wrote previously the Remicade completely cleared up any signs of it, so I'm thinking as my immune system balances from the rolling change of loosing the steroid it will balance out overall. I never tried homeopathy methods but would be open to it if it persists or worsens. I personally don't have any difference in the Remicade rash as it gets closer to treatment day, and typically I notice things worsen, if they do, about a week or so after treatment.
04-22-2014, 01:25 PM   #24
theOcean
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While on Remicade I developed a bunch of skin reactions: eczema, hives, and some level of psoriasis. I had to use creams to treat them, but in the end, it turned out it was an indicator that I was severely allergic and had to switch from Remicade to Humira.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
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Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
07-13-2014, 08:33 PM   #25
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I got my third dose of Remicade July 3 and last night I broke out in the bend of my arms with itchy red bumps. After ready this blog, my thoughts were confirmed. I'm sure it's from the meds! Uuurrgghh!!!
07-14-2014, 09:27 PM   #26
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i got rash after second infusion.
07-15-2014, 06:55 AM   #27
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i got rash after second infusion.
Has it ever gone away, gotten worse or have you successfully treated it?
07-15-2014, 08:14 PM   #28
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Has it ever gone away, gotten worse or have you successfully treated it?
It's gone down, but the rash is still there.
07-21-2014, 08:12 AM   #29
Kerri24
 
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Hi, Update on my situation. I've been removed from the steriod I was taking (see previous posts for details) this has made a HUGE difference! At first my psoriasis kicked up and got a patch on my arm. I'm figuring this is from my immune system doing a bit of a rollercoaster ride after the steriod was stopped. 2 cycles later (8 weeks per) that patch still existed but didn't worsen - but my other rash areas of different degrees seemed better. I found through a liver test that the remicade wasn't staying in my system the full 8 weeks so had to change to every 6 week cycles. Good news is that all my skin issues are for now in remission and last liver test shows the remicade is in fact staying in my system at this interval. So took a full 3 cycles to make a difference. I just in the past week got a new very small patch on my face near my nose can't determine yet it is, so it's a wait and see. Next cycle is next week so we'll see if it clears it up or makes it worse. Remicade is known for causing various rashes, though psoriasis and eczema are found from over active immune systems so taking an immune suppressant shouldn't cause new breakouts, but should clear up any troubled areas, as folks with sever skin issues take this drugs to clear that problem up. Check and make sure you levels are appropriate in your system. If my skin troubles continue or come back I was going to go see a Derm that specializes in IBS skin issues and very familiar with the rashes due to these meds. My standard Derm just wasn't equipped to manage my issues.
07-21-2014, 08:16 AM   #30
Kerri24
 
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Just a thought.... if you are getting rashes during your treatment that's an obvious allergic reaction to the med more so then a side effect from the meds. I'm dealing with side effects. Make sure your Infusion Nurse is aware of the rashes, they can set you up with Benadryl either oral or in your IV to help stop that issue as long as your Dr is ok with it. You'll get a good nap!!
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