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Question about NPSLE (central nervous system lupus or lupus cerebritis)

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Posted 9/18/2012 8:53 PM (GMT 0)
I do NOT think I have cerebritis lupus. My MRI's are CLEAR.

I do however have multiple cranial neuropathies, have had a tia and have very difficult peripheral neuropathy.

Am I right? The point being I switched rheumies based on being treated only with the gold standard and high doses of prednisone and nothing else. My new rheumie put me immediately on CellCept and I have been feeling much better (cept for my stomach, but I'm sticking this one out) Not the stomach, the time it takes for the Cellcept to work, LOL hahaha

I also have discoid lupus and subcutaneous lupus. My main recurring symptoms are of course the nerve problems and rashes, extreme photosensitivity with solar urticaria, hives, ulceric and discoid lesions, mouth and nose sores, anemia, arthritis pain, bursitis, plantar fasciitis, and more. (also hypertension, diabetic, pcos, etc)

Thanks for reading.

Note to Lynwood: I tried to pm you but don't see the availability here. I read lots of your posts on cerebritis, some from years ago.

Sincerely, Julie
Posted 9/18/2012 9:29 PM (GMT 0)
I'm not sure what the question is. Cellcept is what returned my brain to a near-normal level of functioning, after function had dropped significantly from some sort of lupus inflammation. Never really found anything in MRI or had a specific diagnosis other than SLE and measured cognitive dysfunction.

Note that Cellcept does upset most peoples stomach's at first - generally goes away after 2-3 weeks.

I cant' say how long until I noticed improvement, I wasn't tracking it that closely. But it was very improved within 18 months, when we slowly discontinued Cellcept, and my cognition has remained mostly normal-ish since then.

Healing Well does not have an IM function -- mostly I think if any one person has a question, there are probably several people with the same question who haven't posted about it. This way everyone gets the benefit of everyone else's questions!
Posted 9/18/2012 9:49 PM (GMT 0)
Thanks Lynnwood (two N's) :)

I was really kind of wondering if I have or don't have NPSLE. I know I have several of the symptoms on the ACR list of diagnostic criteria here: http://www.rheumatology.org/publications/ar/1999/aprilappendix.asp

I've been very foggy but I feel it's getting better on the Cellcept and am much happier now that I'm on it. I'm going on 3 wks now. Thanks for the encouragement. I'm so glad to hear about YOUR positive experience with it. Much love, Julie
Posted 9/18/2012 10:28 PM (GMT 0)
How did you get tested for it? Did your neuro refer you to a neuropsychiatrist? Did your rheumie? My neuro took one look at my clear MRI and dismissed me. ??????????????????????????????????????????????????
Posted 9/19/2012 1:35 AM (GMT 0)
Rheumy ordered MRI, nothing showed, so I never saw a neurologist. Rheumy treated first with plaquenil & prednisone, then they often pick one of the 3 (Imuran, Cellcept, MTX) to add on. Imuran did nothing for me, but Cellcept gave me back my brain. As far as I know, it wasn't picked to directly treat cognitive dysfunction, but was for SLE overall.

Actually my attorney suggested a neuropsych evaluation since my private long term disability insurance was being a pain in the rear. It shut up LTD people and helped with SSD as well. It just happened to coincide with the timing of just before I started Cellcept.
Posted 9/19/2012 2:14 AM (GMT 0)
Thanks for sharing that Lynnwood! It helps me alot. I don't often find lupies to directly relate to. I will ask my GP about a neuropsych eval. I'm sure he can find me one. I am in process of SSDI after 2nd denial, have lawyer and am waiting for appeal hearing date. Thanks for the help. idea Love Julie
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