Remicade: Has anyone tried Remicade? Does it... - Behçet's UK

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Remicade

OpsDave70
OpsDave70

Has anyone tried Remicade? Does it help better than other treatments? Are there side-effects? I’ve been on Humira and Methotrexate for psoriatic arthritis and, secondarily, BD, but the Methotrexate has possibly done some damage to my lungs and now I am on oxygen. My doctor is thinking about switching my treatment since I can only take Humira and I am still having flares.

Thanks!

Dave

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Hi Dave,

I have taken remicade for spondylitis and BD. I had severe itching and hives on it so they took me off if it. It worked though. Humira, and Enbrel did not work for me at all. I was on cimzia for a year and it works but effects ware off too early before next dose. Even still BD ulcers and washing is barely under control. I have had two severe infections with it. Currently not taking anything since I'm still recovering from the second infection but they are talking about switching me again. Not sure what's other TNFs are left? I really wish they would try a corticosteroid. My BD is just not controlled with methotrexate and a tnf alone. Good luck hope remicade works without really bad side effects.

What type of infections were they? My rheumatologist is reluctant to switch to remicade because of the risk of infection. I’m only taking Humira right now, with Cymbalta to help with the whole-body pain. Ulcers seem to be just under control. I get the bumps that come up before the ulcers, but most of them go back down without an actual lesion forming. I take Humira once a week, and it gives me 3-4 days of benefit before it wears off. I have to sleep on ice packs every night because my skin burns from the chest up. The skin is burning but my core body temperature is mostly normal. Have you had any burning skin and flushing? Also the pain I have is all over, but is much worse in the back of my head, below the knees into my feet and below the elbows into my hands. Have you had this kind of pain?

I think remicade will help you significantly. You won't need cymbalta. ( or humira) all my arthritis pain disappeared

Almost forgot - I saw a study using Cyclophosphamide, in high doses, for six months is thought to put BD into remission. I will see if I can find out where this study is taking place so we can follow it.

It helped me but Drs concerned of urinary bladder cancer. I took for 3 years without a remission. My doctor prescribed Mesnex to take with Cyclophosphamide to prevent bladder irritation

I had remicade infusions every 5 weeks at 10mg/kg for over 12 years. I have advanced multi level lower spine arthritis. Remicade helped so much. No radiating pain. No leg weakness. Miracle!!!

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