A relative of mine has just started anti-tnf t... - Behçet's UK
A relative of mine has just started anti-tnf treatment (infliximab) - is anyone else undertaking this treatment? Any issues or problems?
Infliximab is used by some patients to control the flaring problems of Behcets but like any other drug does have side effects and long term use aspects. Biological drugs are to be discussed at the Society conference in a few weeks so watch for the report in the next newsletter.
My daughter is waiting to start it, so it will be interesting to find out.
I have been receiving Infliximab for almost two years. It has changed my life, definitely for the better. I currently have infusions every seven weeks, but my symptoms have started to return half way through the fifth week and when I have my regular meeting with my consultant tomorrow, I expect he will reduce this treatment to every six weeks.
The only bad reaction I get is the need after the infusion to sleep until the following day (usually around 15 hours), and I lose my appetite from time to time. These are the reactions I get, but another patient might be completely different.
I hope this helps, and I wish good luck to your relative. I hope it improves their symptoms as well as my treatment has mine.
Best wishes Suzanne.
Hi LL40
I have never had infliximab but a good friend of mine who suffers from BD (not on this forum though) swears by it. She says it's turned her life around.
Have been on infliximab for 4 years it has improved my bd quite considerably.
Got my first appointment for infliximab in two weeks time. Listening to others It seems to work and I hope the benefits far out way the side effects. Will keep you informed.
Good luck jk - we'll await you report with interest 
Thank you got my endoscopy next Wednesday not looking forward to that but have to find out why I suddenly start vomiting on occasions then the week after my TNF appt. Will promise to report back.
I have been on Infliximab for 2 years, with 6 weekly infusions. I find that the next day I feel lethergic and my legs feel tired. I also suffer from dehydration.
Other than that I feel great. I am extra careful the week after and the week before an infusion as that is when my immune system is weakest/strongest (and attacking me). By careful I mean that I try not to come into contact with an especially dirty/germy environment.
Andrew
