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Old 09-16-2009, 11:28 AM   #1
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BobfromNJ HB User
Could this be Lupus? Anyone experience anything similar?

Symptoms in Bold: I am very interested to see if anyone else has experienced them!

3 yrs ago: migrating, bilateral rash (always hits both sides of body), initially on chest, then ankles/chins, then arms, then flanks/thighs. Mild most of the time, but immersion in hot water (bath) or shower causes EXTREME itchiness, almost to the degree of pain. Never a butterfly rash on face, but I did have the rash on my nose once. Cycles every 2-3 months, continuing to this day. Biopsy shows generalized inflammatory response.

2.5 years ago: experienced joint problems (very swollen and VERY painful) lasting 3-4 months in right thumb and wrist and left ring finger. No history of joint problems and only occurred that one time.

2.0 years ago (rashes continuing) began having severe sleep issues, fatigue, "brain fog", sensation of pressure in my head accompanied by mild headaches almost daily. Mild pressure, mild pain, but non responsive to pain killers, and persistent. . EVERY DAY. I have not felt "good" or "refreshed" in about 2 years.

on-going: vision deteriorating, jaw pain, short-term memory problems, concentration problems, no "restorative" sleep, chronic fatigue/exhaustion. Sleep meds do not work for me. Have tried em all (Lunesta, Ambien, Ambien CR, Klonapin, Trazadone, Seroquel, etc.) Sleep studies show very shallow sleep and no Delta waves, lots of alpha intrusion.

peroxidase titer high (111) but regular thyroid antibodies OK
ANA AB high (1:640, homogeneous)
vitamin D level on the low side but in range
EBV IGg high (3.77, index range = 0 to 0.9), but IGM okay
normal MRI/C.T.Scans of Brain, abdomen
psychiatrist believes physiological, not psychological
Male, 48.

 
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Old 09-16-2009, 10:06 PM   #2
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heidiclouser HB User
Re: Could this be Lupus? Anyone experience anything similar?

bob....have you gotten a dx yet?

 
Old 09-16-2009, 11:54 PM   #3
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BobfromNJ HB User
Re: Could this be Lupus? Anyone experience anything similar?

no dx yet, working on it... looking for some ideas and questions to ask Rheumy -- and if anyone has experienced the symptoms in bold

 
Old 09-17-2009, 05:12 AM   #4
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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: Could this be Lupus? Anyone experience anything similar?

Bob, hi & welcome. I'm only a patient, so please read this in that light. There are various lupus-specific rashes possible, which the literature says "tend" not to itch, with the exception of lupus urticaria = lupus-related hives (whatever those look like). Presumably the word "tend" means that itching is possible in some patients...?

Have you seen a dermatologist? Where a lupus-specific rash is suspected, usual approach is deep-punch skin biopsy with immunofluorescent stain tests. These stain tests can often, but not always, prove a rash is lupus-specific by lighting up in a way considered diagnostic of a lupus rash.

Do you see any correlation between your recurrent rashes and anything? Like UV exposure, meds, etc.?

In people with elevated ANA, I think other rashes/conditions are possible. For example, I know someone with "psoriatic arthritis", which features psoriasis & pain.

Has your rheumatologist run tests for SPECIFIC autoantibodies? When ANA is positive, more specific tests include anti-ds-DNA, anti-ss-DNA, anti-Sm, anti-Ro, anti-La, antiphospholipid, anti-RNP, etc.

If you continue to strike out, could you try a dermatologist or rheumatologist affiliated with a teaching hospital? Also, there are dermatopathologists = dermatologists/pathologists who do their own labwork.

YOUR QUESTIONS: My lupus rashes didn't itch or migrate, but I had many bouts of localized dermatitis that itched but didn't migrate. My headaches were migraine-level. My B-12 & Folate went to the bottom of range. But whether any of us match with you or not, I hope you keep trying. Sending warm wishes, Vee

Last edited by VeeJ; 09-17-2009 at 05:30 AM. Reason: condensed

 
Old 09-17-2009, 06:56 PM   #5
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heidiclouser HB User
Re: Could this be Lupus? Anyone experience anything similar?

bob....if you now live in nj and want a really good rheumy practive let me know.

 
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