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Old 08-05-2008, 04:33 PM   #1
Join Date: Apr 2004
Posts: 1
linda726 HB User
Question New Here with Questions

I was diagnosed with lupus in 2004. At the same time I was diagnosed with ankylosing spondylitis. I have been on enbrel for the AS and I've tried plaquenil for the lupus. I do have stomach problems when I start taking the plaquenil. I usually just give up and say it's not worth having a stomach ache! Anyone have this same problem? If so, what do you do about it?

Also, last week I went to our annual family reunion at a big waterpark, where we actually stay for 2 nights. I have given up trying to do the rides and sun stuff, but this year I did venture out with my 14 month old granddaughter. (who could pass that up?). I tried to stay in the shade, but I guess it was still too much for me. First I started itching a couple of days after I got home. That lasted for about 4 days. Last night I was washing my hair and noticed my head (at the top, near the crown) was so sore and had a huge knot. When I looked at it in the mirror, it looks kind of shingle-like....about 4 or 5 very red spots. I tried to call my rheumy today but we've had a tropical storm in Houston today, so I will be calling her tomorrow. Has anyone experienced this?



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Old 08-06-2008, 03:25 AM   #2
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New Here with Questions

Linda, hi & welcome. I wear hats (plus long sleeves, trousers, sunblock, etc.) in daytime sun. I was Ro-positive, a subgroup that's almost always very photosensitive. Because I'd had years of nonscarring targetlike SCLE rashes on arms/torso, I never gave my scalp a thought. But then my rheumie saw me wearing a visor & warned that I was ALSO eligible for "discoid" lesions, which, when on your scalp, can cause permanent hair loss. I've covered up ever since. (Just as he'd warned, I did get a scarring lesion, on my face.)

He told me that "rashes can cross subsets". An example: someone with classic SLE, may have had malar rashes; but a meaningful percent will ALSO get discoid (scarring) or SCLE (nonscarring) lesions. In other words, the rash(es) you've already had don't preclude your getting other types of lupus rashes.

Plaquenil upset my stomach initially. But because I'd had 20+ years of GI misery & other chronic problems, I was used to that & just rode it out. Once I adjusted (3-4 days), no problems since. In his book [see below], Dr. Wallace writes that some people do better on the brand-name Plaquenil, as opposed to the generic hydroxychloroquine.

The most useful thing I did after Dx was to visit my local library. There are two lupus hardcover authors I recommend: (1) Dr. Daniel Wallace, and (2) Dr. Robert Lahita.

I hope your scalp heals without any lasting damage. Best wishes, Vee

Last edited by VeeJ; 08-06-2008 at 03:47 AM. Reason: syntax

Old 10-26-2008, 04:55 PM   #3
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Join Date: Oct 2008
Location: Fredericksburg, VA USA
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jnywren HB User
Re: New Here with Questions

I have Ankylosing Spondylitis and am being treated with Methotrexate, which isn't helping as much as I'd hoped it would. I'm nervous about trying the TNF-inhibitors. Could you tell me the positives and negatives of how the enbrel has affected you? I want to hear personal stories rather than just what the drug companies say. I am unable to work at this time. I know I'm not answering your question.

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