Medicine

[Kbethea04]

Good afternoon! Could someone give me a list of medicines they are currently taking for BD or medicine that have taken that seemed to work? I’m currently on prednisone and chocoline

[Alex97]

Consultants are finding it hard to find anything that's will work for me so I have been on a number of different meds including intravenous steroids and colchicine. Tried infliximab, humera, cellcept, azathrapine, aplemilast and I am due to start a new med that I will need to inject daily along side methotrexate. Different meds work for different people and different symptoms, hope you find one that works for you!

[NerdyChristina]

I’ve had drug issues as well. I was on plaquenil because they thought I had lupus like my dad. After we realized it was BD, I tried oral methotrexate but was too sick to my stomach, humira was great for two years however it stopped working. I did a similar injectable that also failed. Cue azathioprine, cell cept, and rituxan. I was hospitalized and did three days of VERY high dose steroids via IV. We did another IV biologic similar to rituxan that I can’t remember at the moment. It went very bad and we realized I’ve developed antibodies to biologic drugs. If it ends in -ab, my body isn’t going to like it. I did six months of cytoxan, but it only worked during treatment. Within two months of completion, I was sick again. I went back to cell cept, but just kept being nauseas and having flares. I’m currently doing IVIG, but it only works if I’m on top of it. Even with it I have breakthrough symptoms so we don’t know if I need to do it more often or what.

I also use carafate for my GI Ulcers, zofran for nausea, and periodically phenergan suppositories also for nausea. Neurological issues I manage with keppra, neurontin, and vimpat. Steroid eye drops and dilating drops come into play if I have uveitis, but luckily that’s only happened twice I’m also lucky I live where marijuana is legal. It helps my nausea and pain amazingly.

[sam0511]

Steroids in the beginning to get rid of inflammation. then built up to 150mg Azathioprine daily with Opramazol to stop the Aza making me sick and vitamin D. It has worked. No inflammation - no migraines. Just had an iron infusion because iron tablets didn't work - anemia is one side effect of Behcets - and I have felt better than I have for years. More energy, sleeping well. Hope this helps. Good luck x

[rooser1]

i was on colcrys myself, along with nabumetone to help with the joint pain. I was also on a lot of antibiotics and anti fungals. The biggest thing that helped me was diet change. I had severe thrush for years, and when I did the candida diet, I felt a difference after 10 days with my BD. I ended up continuing to follow a whole foods, low carb/sugar free approach and now I am medication free.

[SCMW]

Hi, vitamin D (do get this checked as I felt miles better once I had had prescription strength to get back up to Normal), colchicine, triple mouthwash, synalar ointment. Potential aziothoprine. Think I’m on the mild to moderate spectrum but hope this helps. Best wishes

[Frustrated2]

I’m wondering how you are doing now ?

Last July I was put on 2/day colchicine and was doing well until doc thought my bloodwork was off in December and Took me down to 1/day and i declined to the point I had constant flares.

I’ve been 2/day colchicine and Plaquenil was added to it 3 months ago. Goal was to try to get me down to 1/day colchicine with the Plaquenil. That was as of March.

My rheumatologist says this combination can take upto 6 months

Since then I’ve been having flare after flare and we did a burst of prednisone and have left the medications at the same (my labs are checked monthly I’m hoping she leaves me alone as my bloodwork wasn’t off the charts in Dec but she wasn’t on board yet that I had Behcet’s and now her mind has changed.