Behcet's and memory loss

[KimVT]

I am 24 yrs old and was diagnosed with Behcet's in the fall of 2001, and have been on Methotrexate(7.5mg/wk) since winter of 2002, and off predisone since April 2002.  The Methotrexate has been great in keeping things under control, my last major flare was Dec/Jan of 2002/03, I still get minor symptoms here and there, mostly just a few oral ulcers.  The problem is is that the past few weeks especially I have been having a really tough time with my memory.  I lose stupid words in the middle of conversations, I forget peoples names, even friends, I will be driving or walking and forget where it was I was going, forget which parking lot I parked in, and basically can't remember at all what I did or read 5 minutes ago.  I am taking a class and I will read a part of a chapter, walk away, and can't for the life of me remember what I just read, and this is not like me at all.  I have always excelled in academics and been able to remember everything so much so friends joke about it.  When I forget things and try to think of what I forgot, it isn't like it's fuzzy and at the tip of my tongue, there is nothing there at all.  I know it is happening and I have no control over it. I have been under quite a bit of stress the past few weeks and I worry that my BD could be flaring (ie. brain lesions) and causing this problem, but I also heard that low levels of Methotrexate for a long period of time can cause cognitive disfuntions.  Should I be worried about this, does it seem more likely to medication or BD or something else, and is there anything I can do to get my mind back?

[CCF-Neuro-M.D.-CS]

Based on the studies I reviewed, methotrexate therapy alone has not been associated wtih cognitive decline. In children receiving methotrexate and radiation there was an increased risk of cognitive decline. Therefore, I would recommend discussing this with your neurologist. It may not be the Behcet's, but you need to be evaluated. Other treatable forms of memory disturbance need to be evaluated, such as B12 and Folic Acid levels. Good luck.

[Dave-in-Switzerland]

Hi Kim,

I'm afraid I can't offer you any information, but I was wondering if you could tell me where I might get info on Beçet's. My wife is suspected of having it due to oral / genital ulcers which have cropped up on several occasions over the last 2 years or so. She's in perfect health otherwise - running and mountaineering, with a PhD in biology underway. We both would like to know how this thing is likely to progress and what we might do about it. It's hard to get info here in Europe and so I thought I might ask you, since you seem to be pretty well-informed.  

For example, we were told there was no medication for BD - what you write makes me suspect we were misinformed.

I'd appreciate any links to forums or on.line info. And I wish you all the best of luck - I'll cross my fingers that it's just the meds.  Best,  Dave

[KimVT]

Hi Dave,
Unfortunately there just isn't a whole lot of info out there on BD, because it is so rare and there is no specific test for it as well as an unspecific cause.  Bechets.org and Behcets.com both have about all the info there is on BD, also a woman named Joanne Zeis has written a few books on BD.  The frustrating thing about BD is that although there is a criteria guideline, everyone presents differently and treatment varies widely since there isn't one or two things that work for everyone.  Basically BD is an overactive immune system that in many people seems to "flare" especially during times of stress and is common to first show itself in people in their 20's and 30's.  Everyone is a little different, for me I had the oral/genital ulcers, fever, aches, sore joints, swollen and sore glands, fatigue, and a few nodules on my legs, luckily no eye involvement as of yet.  Some people get neuro involvement and GI involvement too  The web sites above give a list of general symptoms.  
As far as treatment, the first response in usually a steriod like prednisone to quiet the immune system, and then there is a whole pile of other meds that can be tried to keep the immune system quiet and prevent other symptoms, but again it differs for each person.
The only way to diagnose BD is rule everything else out along with having the more common clinical symptoms, I had a bunch of blood tests and a chest X-ray, and cultures and biopsies of the genital ulcers.  The main thing with BD is to get as much info as you can, and be your own advocate.  Hope the info helps, good luck.
Kim      

[Dave-in-Switzerland]

Thanks Kim, It was nice of you to reply.  I'll look into those sites. In the meantime, good luck with the memory trouble. I hope things work out for you.

Best,

Dave