Arthritis in Behcet's Syndrome

[spunkykitty]

i've had behcet's syndrome since age 5... i m now 43... i get arthritic symptoms but each time i test for RA there is nothing there, even tho my joints are severely inflamed, swollen to twice their size, and hot to the touch... this arthritis affects all joints in my body wherever there is stress... sometimes if the swelling is not severe, i just take acetaminophen, and lots of rest... but every decade or thereabouts i get a severe crazy out of control flare up and right now i m going thru one of those... i m on prednisolone and diclofenac (only diclofenac works on me when it is severe, no other NSAID does)... but i hate the side effects of prednisolone!!!

i just wonder if anyone out here also suffers from behcet's and has this kind of 'arthritis' that doesn't show up in RA tests?

[kmgore]

I have BD too. I was diagnosed about 2 yrs ago- I have had symptoms for almost 24 yrs. I am 38 yrs old. I am taking imuran and it helps. I have been on pred but that was due to a bad flare that landed me in the hospital for a week. Ask your doc's about imuran and see if it might help.

As far as getting off the pred- I have heard several people who have BD say they have to decrease there pred 1mg at a time but only 1mg lower for a month. sometimes they have to fluctuate (sp) it- meaning- 5mg one day then 4 mg the next and then back up to 5 mg and then back down. They do that for a few weeks and then stay at the 4 mg for a month then another 2 weeks of fluctuating again.

I hope this helps.--- Oh BTW- my neuro and rhumie have said to me that maybe I should try to get back on pred & I told them NO!!!  I want to save the big guns for when I am really sick!

BD is a horrible disease!  I get skin sores, mouth and genital ulsers,  joint pain- no swelling in the joints- memory loss, fatigue (really bad), flu like symptoms. That is all I can think of right now. I am sure there is more.

I am sorry if I misspelled anything or if it was hard to follow me.

Take care & best wishes!!

[lizalons281]

I have bechet's which was diagnosed when i was 15.  I am now 63.  for years I was unaware that there were any symptoms other than ulcers.  four years ago I began to have enormously swollen joints, strange red lesions on my arms, trunk and behind my knees, I was coughing up blood and felt like death.  I then discovered to my dismay that Bechet's has many, many symptoms.  I have taken Prednisolone for about four years and have been on 5mg for the last two.  Over and over again I have tried to reduce them as I know what damage they are doing - but as yet without success.  At one time I was put onto Methotrexate - but my hair fell out, I felt no better and so refused to continue and returned to Prednisolone.  I am currently taking 4 and a half mg per day.  If anyone has any tips of reducing these horrible pills - please, please share them.

[txsilver]

I am bumping this up so it gets more visibility.  I think you have a very interesting question.  You might post it in the autoimmune community too.  You mention that you do not like taking the steroids.  Have you tried one of the other medications used to treat behcets?