I am in desperate need of finding a new treatment plan that may give me a chance at having decreased swelling and pain. I'm not even counting on full remission anymore, as I just don't see it happening for me because it's been 4 years that I've been so sick that I've had to give up so many things and am bed-ridden most days. I've been on maximum doses of Remicade 800mcg every 6wks for over a year now, and yet I still end up in the ER often to help manage my symptoms. I'm on very high doses of pain meds around-the-clock pretty much, but I'm still suffering in so much pain all the time. I've tried Azathioprine, Methotrexate, steroids (oral, IM injections, and I.V infusions) and am still on Colchicine; but nothing seems to help. I couldn't tolerate any of the immunosuppressants I was on because they just made me more sick and miserable.
I finally have another appt. set with my rheumatologist on June 6 (I was trying to get into see him since February, but he was taking so many holidays and was booked-up), and my Mom plans to come with me to demand him to come up with a new plan because the one he has is long overdo for retirement. He kept telling me Remicade is the best option for Behcet's and to just be patient.. but I think an entire year at the max. dose with no response is being patient enough. I've had it with this stupid disease.. I'm 25 and feel like I'm going on 95 because of all the crap I've been put through over the years because of Behcet's and I'm just so exhausted from it all. I just want to feel less pain and enough energy to get myself out of bed in the morning-- not asking for a miracle cure, just want to be a bit more comfortable!
I'm just wondering if anyone has had experience with receiving steroid injections through the I.V regularly as a treatment?
I'm looking into this option because everytime I go to the ER and get high-doses of steroid injections in my I.V, it immediately helps me feel a lot better than when I arrived at the hospital. It doesn't last long though, but that's probably because they don't give me a long-acting one and in a small dose.
If so, which steroid do you/have you received, what is/was the dose, and how often?
Also, is or was it helpful in treating your symptoms? or even just helping to decrease swelling and pain?
Thank you so much to whoever responds!