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Sjögren's Syndrome Message Board
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Old 06-13-2011, 01:30 PM   #1
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Join Date: May 2010
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thedancedk HB User
Desperately Need Advice

Hello-
Two years ago my scalp became red, painful and hot and my hair gradually become stiff at the scalp. It hurts to move my hair and it's so stiff and brittle the hair breaks off, particularly on the right side. I'm unable to wear my reading glasses because it's so painful above my right ear. I was sent to a rheumatologist who I'd seen 8 years ago for Raynauds and arthritis. Recent lab work shows negative for the RH factor and "mild" for another RH indicator. In addition to hip bursitis I also have arthritis in my neck, back, knee and hands I also have had dry eyes, mouth and excessive thirst for 2 years. This doctor said I have Sjogrens and believes there is an unspecified type of connective tissue disorder going on, however he's never seen these scalp and stiff hair problem. I was placed on Plaquenil (200mg twice a day) and it did nothing after 3 months so he added 15 mgs of Prenisone, decreasing 1 mg each week. Prednisone worked wonders for the scalp pain and redness as well as arthritis until I got down to 9 mgs. He doesn't want me to stay on this high of a dose so added weekly inections of Methotrexate 25 mgs. It's been 3 weeks of this and I'm at 5 mgs. of Prednisone, am in horrible pain - both arthritis and scalp/hair situation. Eyes are dry again and I've gained 15 pounds since starting the Plaquenil and other stuff.

Has anyone ever heard of the scalp and hair problems? It's so painful and my hair grows in odd directions now so I wear a hat alot of the time to avoid having to style it. My doctor is mystified as to this. Although the Prednisone helped with the pain, my scalp was still red and hair stiff and breaking off.
Sorry this is so long but I'm desperate for help! Thx. Exhaustion for 4 yrs too!

 
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Old 09-08-2011, 12:59 PM   #2
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Join Date: Oct 2008
Location: MA
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pw1958 HB User
Re: Desperately Need Advice

I was looking on this site to see if anyone has had the same issue as far as the pain, redness, and itching of their scalp! I have felt so alone lately with whatever has been going on with me. I started with these tiny bubbles way up on my forehead and neck area to swelling around the right ear and my scalp looked as tough it was on fire! It has gone to weird shapes on my neck, to itching, to burning, to my cheeks burning! Went to the dr for this LAST week who said,"Did they diagnose you yet?". I haven't been to a rheumie in quite a while. The original thought was I have some type of Lupus, but the bloodwork says negative. Around here if your bloodwork says negative, than they say you don't have it. I have all the signs from five years ago, but it doesn't show in my bloodwork. My hair has really thinned out, and I don't even see a lot of regrowth. I so wish that I could help you out. I started Lyrica for my Fibro in June, and it has made me gain weight. Talk about being depressed. Sorry that I rambled on about me. I hope that you do find an answer. Take care of yourself!

 
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arthritis, auto immune disease, hair breakage, scalp, sjogrens



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