T n f medication: Hi is any one on t n f... - Behçet's UK

Behçet's UK

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T n f medication


Hi is any one on t n f medication I'm going to be put on it doesn't it work I'm really down at the moment I've no fight left I've been on loads of different meds nothing helps my condition is getting a lot worse I only get about ten days between bouts of ulcers which can last up to 4/5weeks and they are massive plus arthritis is bad just hope this med works

5 Replies

I've done a lot of biologic meds. I was on Humira, an anti-TNF drug, for almost 3-years with serious success. The only real concern was that I developed antibodies apparently. No other anti-TNF drugs would work, and then I had a severe reaction to Remicade. It's not common to develop antibodies but I have heard of people having issues with other drugs in the same class not working once the first or second failed.

I did have occasional oral ulcers, but the real reason I had to stop was the GI Ulcers and neurological issues. I failed a ton of drugs so I ended up doing six rounds of Cytoxan (yuck!) but they have lots of combinations you can do before it gets to that point. I just had such extensive GI involvement that oral meds weren't an option.

Hi Hun ! I've been on humira now for 6 weeks , nothing else seemed to work ! This is the first week I have started to feel better and have a bit more energy and for the first time in 3 yrs I have no ulcers!!!! Yayyyy!! Fingers crossed that it will continue to help ! Initially I did pick up a few infections including shingles but I'm hoping things will settle down now . Like you I was soooo frustrated that nothing seemed to help and had visions of my health physically and mentally deteriorating rapidly and it was frightening ! Hope this helps ! Jo xx

Just had my first consultation after 6 weeks of starting Humira and I have been flare up free since :D Fingers crossed it remains that way!

It took a few month for Humira to take effect for me but when it did it changed my life. Stick with it. Give it time.

I was in Colchicine and it really helped until it caused liver problems. I’m one of the 1% who can’t tolerate it so I had to discontinue it and now I’m not taking any medicine because the other one the doctor wants me to take costs $480/mo after insurance and I can’t afford it. The doctor said he could try an immunosuppressant but it’s too dangerous with Covid going around.

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