Sjogrens and problems walking (muscles/nerves)

[lolo1979]

Lucy,
I have this weird numb sensation from my knees down too. Currently it appears and disappears at random, and hasn't affected my walking - yet. I'm not naive enough to think it won't eventually though.

Anyway, I think these nerve problems go hand in hand with sjogrens, and from the research I've done, it seems the medical field is coming around to the consensus that sjogrens is nerve mediated - and not just a random attack on our lacrimal and salivary glands.

In any case, I did find this very interesting article about a man with primary sjs who was experiencing very similar symptoms. He tried various immunosuppressants - including methotrexate - and none of them were addressing his autonomic dysfunction (aka nerve symptoms). They finally decided to put him on entanercept (enbrel), and his symptoms began to improve.

I've pasted the link below-- it might not hurt to print and show your doc next time you see him/her. Incidentally, I foundthis article very interesting since the few studies they've done did not show enbrel to be effective for the sicca symptoms in sjogrens (and thus concluded that enbrel was ineffective for sjogrens overall).

But as we all know, many of the immunosuppressants help us in some way or another, even if they don't solve our sicca problem.

Here's the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2621382/

[gurs]

Lucy, I have the same thing. I havent been able to walk much or anything in over 6 years now. I have neuropathy all over and my muscles are very weak. It sounds like alot of this is neuro issues from the Sjogrens, as long as they check out everything else. I keep saying that this disease is much more than most think...not just the dryness, but more CNS issues with alot of us it seems. This is the hardest thing to treat it seems. You may need to talk with our rheumy perhaps..make sure when you go, you see her, not her NP ok?

Gursie

[susan]

Lolo,

Thank you so much for the link on the use of Enbrel in autonomic dysfunction.

Too much to explain, but this is an important piece of information for both me and my 15 year old great nephew. He was a fit, athletic kid & has been down, literally, for 2 mos. He is being worked up for POTS, autoimmune stuff. I am so worried about him!

I so appreciate your post:)