Remicade and Eczema
Fri, October 14, 2011 10:28 PM
I was diagnosed with UC 5 years ago when I was 21. It's been an uphill battle since then. About six months ago I started remicade infusions after landing myself in the hospital with a terrible flare. Since starting infusions every eight weeks I have been symptom free for the first time ever! I am finally really living and enjoying my life again.
About four weeks ago I started noticing some skin changes that I initially dismissed but quickly became pretty horrible. I've seen a boat load of dermatologists and my gi, and it's been determined that Remicade is allowing the expression of a gene for eczema. But it's all over my body!
Now I'm faced with a decision to continue or stop the infusions. Antibiotics, prednisone and lotions are starting to get my skin under control. But I'll probably have to battle this as long as I stay on Remicade. My other option is Humira, but insurance refuses to cover it. Plus if I start Humira and it doesn't work, my only option is surgery.
Has anyone else had this sort of experience? What did you do?
Joined Jan 20, 2009
Fri, October 28, 2011 3:52 AM
Reply posted for riley.
I thought my only option was surgery (uc) until I changed my diet. I didn't have much hope but I haven't looked back. Please read Alan's advice.
I also had very itchy skin then a severe blistering rash eventually diagnosed as eczema(??) It disappeared when I changed what I ate.
Diet is reversible, surgery is not. For me there was no decision about which to try first although diet does take some time to be truly effective for uc. There were downs as well as ups in the beginning.
Joined Oct 12, 2008
Thu, October 27, 2011 2:18 PM
Reply posted for riley.
I don't know if switching to humira will be any different in terms of the eczema. There are also people online saying that they developed eczema while on humira. My son, who is 13, just started taking humira about 6 weeks ago. A few weeks back, he started to get a rash on his arms, neck, chest, back, and even on a little on his genetals. He also had flu-like symptoms develop around the same time as the rash, though we are not sure if those symptoms were related to the rash. My son was refered to a dermatologist who diagnosed the rash as eczema. But my son has never had eczema, and it is not something that runs in our family. From reading other people's posts, it looks like both remicade and humira can trigger eczema, though it is rare. Unfortunately, my son seems to be very susceptible to everything rare.
raquelitaJoined Dec 28, 2009
Sun, October 16, 2011 9:48 PM
Reply posted for riley.
Hi,
I just wanted to get back to you on your question and try to add some advice. I was on Remicade for 3 years, I have Crohn's and at first it did a good job. I had a small reaction to it, but getting some benedryl in the iv line stopped a very small rash. My case of Crohn's is and has been really severe, so I was to far along for remicade to really help. I have had about 10 operations for the Crohn's, and the likely hood of me getting a colostomy early on when trying to hit the Crohn's hard was very real. So getting the operations had to be done just to keep up with it. In '09 I needed to get a partial coloectomy with a permanent ostomy and I really wanted to also. I have never felt better and am looking to become a police officer again, and I am playing in a ice hockey league no problem. I have been on Humira for over a year now, it has been huge. The Humira has kept my server level case of Crohn's and after 10 operations totally under control. I am sorry to hear you Insurance does not cover it?, that stuff is not cheap. I hope you can find away to get your insurance to cover it, I would look into that as much as possible. Talk to your GI doctor and a surgeon about all the questions you can possibly have about surgery. Surgery can be intimidating, but the results can be beyond reliving. Everybody is different with IBD and there situation, so I would be assertive and build up your confidence about everything. I am a veteran at operations, so I know its easy for me to say. I will never forget when I was first diagnosed with Crohn's in 1987, this after a year of knife stabbing stomach pain. When my GI dr found out what it was, I could not wait to get to the hospital and get the operation. I had been fine all the way until 2003 to, so it had certainly been the right thing to do. I hope this helps you in any way. Learn and read as much as you can and talk to drs. you really like!, that's the most important thing.
Andrew
Joined Aug 5, 2009
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