I was diagnosed with Behcets in March of this year and was on prednisone at first when my vision in my left eye was diminishing quickly. I am not on prednisone any longer but I am on Methotrexate injections, Folic Acid, Diclofenac, and Remicade. The Remicade fully restored my vision, but at about 6 weeks after my final 'uptake' dose, the eyesight in my left eye started degenerating again. So my schedule may be adjusted from 8 weeks apart to 6 weeks apart.

Like you, I was relieved to finally have a diagnosis that seemed to fit correctly. I was diagnosed with Crohn's in 1999 and treated with steroids for many years but other symptoms lead to other issues that are similar to Lupus, MS, and RA. I've been round and round with many Dr's over the years and given up many times of ever being able to feel normal again. My Dr.s were all arguing about whether I even really had Crohns or not....even though the biopsies say I do. in 2007 I decided to stop all meds because nothing seemed to really help. For 3 years I dealt with the pain and symptoms just through self talk and meditation - sort of 'faking myself out' that everything was okay and just pushing through what i had to do each day to make it through. But in October of 2010 it hit me full force like a slap in the face when I almost totally lost the vision in my left eye. They thought I had a brain tumor or MS....so more tests for 4 months until reaching the Behcet's diagnosis. Behcet's has so many symptoms that are similar to those other illnesses and so the loose ends were all starting to fit together and make sense.

So far the Remicade is helping tremendously. Before it, I was at a pain level of about 4 most days for years - with spikes to about 7 or 8. Since taking the Remicade, I would say that on a daily basis I am at around a level 2 for pain most days - until I hit that 6 week mark and then it spikes up to a 7 or 8 and the vision gets blurry and double along with the eye pain and severe headaches....and skin and genital lesions, joint/tendon pain, body aches, fatigue....am I forgetting anything?! It's a nightmare. But you know that. Now my fiance is saying my gait is changing when I walk and I am having a flare. I have noticed it seems my legs don't want to do what my brain is telling them to - so there is something going on there that needs to be addressed.

I have not heard of IL-1 so i am not sure about it. I've been reading on the RA support group because I had not found this one yet and their treatments are similar to ours. So I am glad to find this one and hope we can all work together to find a way to beat this terrible disease.

I first got Behcet's after a flu shot in Nov. 2005. It led to a series of wrong diagnoses until my family Dr. figured it was BD. I was in critical condition until he recommended 60 mg pred. It broke the flare but I never completely healed. Subsequent flares made it worse. I started Tibetan medicine in 2009 and it has helped but not cured me.

Thank you both for sharing. I welcome you Hair Fairy (sorry I missed your name) I might suggest being checked by an immune Neurologist or a MS Neurologist. (not a general one) Have them check you for a Foot drop or Mononeuritis Complex. These two Neuro conditions tend to affect BD as you are being affected in a new area.. Hopefully, you can find a Neurologist that knows about Behcets if not maybe they will be willing to learn. Desmond Kidd in London has many articles (clinical) and they can always check with the Behcets Center at NYU.

Secondly, Jack it is good to hear from you. How are you doing? Are you feeling better?

I hope others will share their experiences.

I'm new to this group... I was finally diagnosed w/ BD a month ago after a week in the hospital. I've suffered from the symptoms since 2006. I started colchicine about 2 weeks ago and it worked well, but because of the severe pain in my stomach I stopped taking it a few ago. I am beginning to flare again.

Symptoms...
oral ulcers, gential lesions and on my 'bottom,' acne-like bumps on face neck shoulders back arms, diariah, intestinal burning, sensitivity to light, and bad migrains.

I have a question about the eyes....

2 weeks ago after a dialation, my optomologist said 2 my eyes were perfectly fine and the light sensitivity is not due to my eyes, but due to my migrains....what? To me it seems as though the light is causing the migrains. I'm so sensitive to light that I've been sleeping during the day for the past month. Additionlly, i frequently have an 'itch' in my eye almost like i have a piece of sand or glass in it. It comes and goes. My vision is 20/20 and I can see fine, for now. Was everyone else like this too at the begining??? Or is it possible that my eyes ARE fine and something else is causing the headaches and the sensitivity to the light?

Thanks!
Don

I am glad you had your eyes checked but light sensitivity can be a symptom of certain types of headaches. This is correct. It can also be a symptom of other things to, but common with Migraine Headaches, watch out though for the medicine they use for migraines as a Behcet's patient you have Vasculitis and certain medicines for migraines affect the blood vessels. So, mention this when you see a Neurologist. That is the Specialist one should see and preferably an auto immune one or a MS one because they tend to know more about Behcet's then a General Neurologist.
Good Luck! It might take some research to find the right Neurologist but once you do and they can help you to alleviate it or less it at least.