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remicade and my skin is coming off??

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Crohn's Disease
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Posted 6/24/2013 5:47 PM (GMT 0)
i have been getting remicade infusions now for a little more than a year, and as of a few months ago it was increased to a double dose, every 8 weeks. i dont take any other medications. my last infusion was may 1st. about a month ago i started breaking out with blisters all over my body. it looked exactly like chicken pox which is what my doctor and i both thought i had. its been a month, and now all of the blisters have opened and grew into these huge scabs, and i have lost almost ALL of the skin on my hands and feet, down the base layer. they are very raw. i look like i have 2nd degree burns on my hands and feet. i went to the ER a couple days ago and they said theres no way at this point it was chicken pox, and they wanted to admit me because of the risk of infection. all of my bloodwork came back perfect, and they were wondering if it could be stevens johnson syndrome or some other kind of reaction induced by the remicade. they said they didnt have the reso0urces there to take care of me and discharged me.. tomorrow i have an appointment with an infectious disease doctor in a bigger hospital, but was wondering if anyone else has experienced this or has any ideas?? please and thank youu
Posted 6/24/2013 5:51 PM (GMT 0)
Are you being pretreated with steroids and benedryl when you get your infusions? Yikes, it sounds awful. How are you managing the discomfort?
Posted 6/24/2013 5:57 PM (GMT 0)
Just benadryl, no steroids. And ive just been taking benadryl at night bc it itches so bad, and tylenol during the day. I have hands and feet wrapped with neosporin and gauze to try to keep them from getting infected..and ive been trying to stay off my feet bc if i stand too long they bleed and bruise. I dont know what else to do these doctors have been giving me the run around the past couple weeks. Idk whats wrong with my but i know if it gets infected i could have a serious problem on my hands
Posted 6/24/2013 6:07 PM (GMT 0)
Ugh. Any thoughts about seeing a dermatologist or allergist/immunologist?
Posted 6/24/2013 6:18 PM (GMT 0)
Tomorrow im going to see infectious disease..they thought that should be the first specialist..if they dont know then ill see derm. Ive never seen anything like this and physically i feel fine. Even my crohn's has been cooperating.
Posted 6/24/2013 6:22 PM (GMT 0)
Ive spent a couple weeks calling multiple types of doctors and no one will return my calls. I thought i had chickenpox so they probably figured it cant posdibly be that bad and im probably contagious. Ive never seen any of them before so id be a new patient and i guess they cant be bothered? Its kind of ridiculous
Posted 6/24/2013 11:31 PM (GMT 0)
All the anti-TNF meds including Remicade have been reported to cause serious skin reactions in some people. Here is a link to the report of this: Serious Skin Reactions Reported with TNF-Alpha Antagonists

You need to have your GI or GP call a dermatologist and get you in for a stat appointment. They can do that. You need aggressive treatment to prevent infection and scarring.

Posted 6/25/2013 11:20 AM (GMT 0)
I've been having a red, blotchy rash with blisters, though not nearly as serious or widespread as yours. It's painless and dries out in time.

The GI says it's pustular psoriasis, a side effect of Remicade. It can get quite out of hand, so you should definitely follow up.

Posted 6/26/2013 5:00 AM (GMT 0)
Wow, I am so sorry to hear all that you’ve been going through. I am really glad you’re taking precautions not to get infected, though. I honestly don’t know much about what you’re going through, and it’s concerning to me that you’ve called multiple doctors and no one has returned your calls. I did some online research to see if there was anything that could help you, and I remembered this site I have used before to ask doctors questions: http://bit.ly/aohS8N . They’re usually pretty quick to respond and I’ve always gotten responses to my question. Worth a try, I hope you find it useful. They even have a Find a Doctor feature, so it might end up being super useful for you. Keep us posted and stay strong, I’ll keep you in my thoughts.
Posted 6/26/2013 3:28 PM (GMT 0)
thank you guys for the support and the information..
@seconder-even if what you're going through isnt as serious like you say, its still irritating, and im sorry that you are going through it.\

update- my mom and her boss got me an urgent appointment with the infectious disease doctor that works at the same hospital they work at so i saw her yesterday. big surprise, she doesnt know whats wrong either. apparently whatever i have going on isnt very common. she asked if she could take pictures of it, and asked if i could email her the pictures i have on my phone of the progression over the past month. (my mom is a nurse and kept having me send her pictures so she could see what is was doing thinking it was just chickenpox plus remicade). the doctor said she had a couple ideas as to what it could be but she didnt want to throw them at me until she got confirmation of her suspicions from someone else?!? she said not to worry though, we would figure it out and fix it. shes been trying to contact derm to get me in faster than i could do on my own, and a surgeon to have it biopsied. she also sent me for complete lab work up, routine blood checks as well as some non-routine, and urine tests, and i believe she is showing the pictures she took to derm. i asked if she thought it was healing, she said its hard to say because she didnt see it before. i asked if she thought it would go away and come back, she said it depends what it is. i asked if she thought it was serious, and she said i was at high risk for infection, which i already knew. she didnt think i needed to be in the hospital though. she prescribed me an antibiotic cream and i have to keep my hands and feet wrapped in gauze, and i return to her in a week, unless it gets worse. hopefully by then we will have some answers. it looks like its slowly starting to heal, but i still need to know what happened..
Posted 6/26/2013 4:23 PM (GMT 0)
gosh, I would stay far away from hospitals because if you acquire an infection there, it will be a doozy!
Posted 6/26/2013 5:13 PM (GMT 0)
Thank you for the update. Glad you're slowly healing, but still, it would be nice to know what you actually have!!! Did you end up trying Healthtap? It would be interesting to get some second opinions from them too, I feel like.. I'm so curious. Once again, keep us posted. You're in my thoughts.
Posted 7/6/2013 1:34 AM (GMT 0)
it was psoriasis. really rare, really severe case of psoriasis. i mean im glad thats all it was but really? i had no clue it could get like that. i never had it before. doctor said it was most likely caused by the remicade, an infection, or a combo of both. strongly advised against further infusions (which i think im too afraid to go back to anyway), got some medicine and had a biopsy done, and in 2 weeks were going to talk about light therapy or biologics. not sure how i feel about using a new biologic to treat the problem that the first biologic could have caused..
just itching to go back to work (no pun intended)
Posted 7/6/2013 4:46 AM (GMT 0)
geez, that sounds so awful!! I've read stories like this of people on humira so I'm not surprised at all that remicade can cause this. yeah, i'd definitely stay away from more anti tnf drugs if I were you. I really hope your psoriasis goes away and that you find something to control your crohn's.

http://www.ihaveuc.com/side-effects-from-humira/

http://www.ihaveuc.com/humira-side-effects-part-two/

http://www.ihaveuc.com/psoriasis-and-eczema-following-remicade-or-humira-use-for-ibd-patients/

I figure i'd post these from another site because it's so similar to what you are experiencing.

Posted 7/6/2013 9:42 AM (GMT 0)
I could be on the wrong track entirely but it popped in my head since you mentioned a skin reaction following the increase of medication, but has anyone suggested Stevens-Johnson's syndrome?

Sorry you are going through so much trouble... I hope it improvs rapidly.
-Nicole
Posted 7/6/2013 11:11 PM (GMT 0)
bananagirl-those are interesting articles. the doctor that i saw said that he was going to look into it for me too the instances of this occurring with just remicade, and also with just crohn's since it is supposed to be more common to have more than one autoimmune diseases if you have one.

and nicole- when i finally gave up on getting into doctors offices and went to the ER, stevens johnsons was one of the first things they were thinking it could be. luckily though it wasnt. i think with that theres a lot of tissue thats necrotic. i had all of the top layers of skin die and come off but it hadnt gone deeper or turned black like i saw in some pictures when i looked up what stevens johnsons was (i never heard of it-its horrifying)

the medicine that the dermatologist gave me is working like magic its only been a few days and most of it has cleared up. itll probably be another week or two until i have enough skin back on my feet to wear anything other than slippers again but my overall everything is looking much better and i think ive managed to dodge infection.

thank you everyone for the well wishes and information..it really is nice to have some uplift and understanding people to talk to when stuff like this happens.
Posted 7/6/2013 11:16 PM (GMT 0)
oh and ally- i tried the health tap a week or so ago but i think i kept wording my question wrong. They kept sending me back emails saying i wasn't thorough enough, but I did look around at what some other people had asked that was similar to mine and some of the things they were answering with was psoriasis. Its a cool site, my brain just hasnt been working right. :-/
Posted 7/9/2013 5:59 AM (GMT 0)
I'm thrilled to hear that my suggestion was off track. More than that, I'm so very glad to hear how much your situation is improving.

-Nicole (Who's day is brighter everytime one of us has good luck with a Dr, a medicine, a food, or even just a good moment to share.)
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