Behcet's Disease Support Group

Hi Gilly,

I am Heather, and I hope we can build up new people here in the Behcet's forum!

I am newly diagnosed in the last 4 months, after a year of hell. It is frustrating to have a disorder so rare, it can feel alienating.

I had severe swelling/arthritis as well, which actually I am now told is not usually a prominent symptom of Behcet's. I have had the ulcers, horrible mouth ulcers, but none since I started treatment.

Because my symptoms had gotten so severe, I was started on Enbrel as my first medication. I lost 60 pounds in the last year due to this disease!

I am currently on Enbrel, and Norvasc (as I also have moderate Raynauds and vasculitis). He just added two weeks of prednisone (my rheumie is very anti-prednisone) but I am continuing with severe muscle pain despite significant improvement in my joing symptoms.

So far, with two months of Enbrel, I have had a significant improvement in my joint pain and swelling, have gained back 12 pounds, had good resolution of my ulcers(primary Erythema, the red "knots").

I am continuing with severe pain, stiffness, and redness, as well as fatigue. Since I am on the "consided" heaviest artillery medication (other than Remicade), I am hoping as my MD says that things will still get better.

I have had only minor luck with treating the Raynauds, have tried the Norvasc, Calan, and Nitro-gel.

Try to keep painkillers for once in a while. I am a nurse, still working and desperately want to keep it that way, but it is a daily battle! I know this is long, just so glad to see someone new on this page. Feel free to add me as a friend, and to contact me for support/questions.

Hi Heather
Thank you for your reply. I am just in the beginning stages of being diagnosed and expect it will be a long road to a firm diagnosis. The doctor talked about starting me on Methotrexate at my next visit which will be 5 weeks away. I have both mouth and genital ulcers but they do not worry me as much as the arthritis. Fortunately the arthritis is bearable during the day , most painful and stiff in the morning and evening. I will look up the medications you mentioned.

It is really nice to meet you and talk to you. I feel a little overwhelmed at this stage but believe that knowledge is key in coping with rare diseases.

I had my colon removed 4 months ago for what was thought to be ulcerative colitis. It was supposed to fix my problems but once I went off the prednisolone the symptoms of Behcet's appeared.
Thank you for sharing your story
Gilly

Gilly, so glad you are here! MTX is considered the "front-line" Bechets treatment. I hope it works for you. Because my Rheumie felt I needed the heavy stuff right off, I may never know if the lighter treatments would have helped. I would have preferred trying them, as this medication carries a greater risk of cancer for which my MDs no longer want me on birth control. I wish us ALL the best in even getting diagnosed - as for me, like I said, it has taken many MDs who thought I was a hypochondriac to get here, I am so thankful in some ways to have a "diagnosis", albeit one so rare!

((((HUGS)))

Heather

Hi Gilly!
I was diagnosed with BD May 2008 but had symptoms for about a year before. I have been in a constant flare since then and am on lots of Prednisone. They tried Imuran for a while but i was not able to ween off steroids as my ulcers were so bad. Now I too am starting Methotrexate. I have done 4 injections now. It is OK but I do get pretty bad headaches and trouble sleeping for the first 2 days after the injection. My rheumie wants to see if this will work before I go on Enbrel like Heather.
Interesting about your colon. I had a colonscopy last year and had ulcers in the colon that the GI specialist attributed to Behcets. The American Behcets Association has a great website and support at: www.behcets.com
I hope all goes well.

hi Tiffrich
The doctors are undecided between Crohns and Behcet's because my symptoms - mouth ulcers, genital ulcers, bowel ulcers, arthritis and eye problems can occur in both conditions. I don't care, all I want is some treatment. I have tried Imuran and 6MP but my body couldn't tolerate either. Everyone seems to hate prednisolone (or prednisone) but I would rather be on it than suffer in pain. Hope the Methotrexate works well for you.
Regards Gilly