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Old 07-31-2014, 08:25 PM #1
Jon_sparky Jon_sparky is offline
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Default Lupus and SFN connection?

Out of the several bloodtests my Rheumy gave me, three of my tests came back positive for Lupus, so the doctor started me on Hydroxychlorquine, she said to come back in 3 months to see if it helps with the painful joints. The pharmacist asked me if I had malaria...
Is there any overlap between SFN and Lupus? seems like there may be a connection with these maladies and FMS/CFS.
I have never had the skin rash, so I never thought I might of Lupus. I realize the Lupus blood test can vary quite a bit.
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Old 07-31-2014, 09:20 PM #2
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You are right, Lupus tests can vary. But for three (I don't know which ones you are talking about) to be positive, then treatment should be warranted.

ALL autoimmune diseases can have a relation to SFN. Treatment is also different. Sometimes IVIG, or immune suppression is used...Rituxan in severe cases.

Plaquenil (hydroxychlorquine) typical takes at LEAST 3 months to help joint pain and other symptoms...many times up to 6 months or more. Scary thought if your pharmacist mentioned malaria. Not a common thing here, and dosing you are getting is far from dosing for malaria. I'd find another pharmacist if they didn't know this was used for autoimmune disease and could recognize dosing for it.
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Old 08-01-2014, 01:04 AM #3
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Quote:
Originally Posted by en bloc View Post
You are right, Lupus tests can vary. But for three (I don't know which ones you are talking about) to be positive, then treatment should be warranted.

ALL autoimmune diseases can have a relation to SFN. Treatment is also different. Sometimes IVIG, or immune suppression is used...Rituxan in severe cases.

Plaquenil (hydroxychlorquine) typical takes at LEAST 3 months to help joint pain and other symptoms...many times up to 6 months or more. Scary thought if your pharmacist mentioned malaria. Not a common thing here, and dosing you are getting is far from dosing for malaria. I'd find another pharmacist if they didn't know this was used for autoimmune disease and could recognize dosing for it.
the tests were
Anti nuclear antibodies - immunofluerescence IF 1:80
Tier 1 avise 2.0 - Ec4d (FACS) 14 (barely positive)
Tier 2 Avise 2.0 - 0.4 suggestive
so I just barely got under the wire...
Well in all fairness, she was just going down the list of maladies, it just happens that hydroxychloquine is originally formulated for malaria, I could have just got off the plain from Africa! As it was, my brain fog was so bad I couldn't remember Lupus, so I did a guessing game with her for awhile... Special thanks to Lyrica for giving me the brain fog! I am so done with that stuff...
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Old 08-01-2014, 06:54 AM #4
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Default Neuorpathy can be a secondary effect--

--of all the anti-nuclear antibody associated conditions, either through autoimmune cross reactivity or through ischemic compromise.

See:

http://neuromuscular.wustl.edu/antib...tml#vasculitis
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Old 08-01-2014, 07:32 AM #5
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I have had 2 spells of DRUG induced
Lupus so far in my life. Both with negative
ANA.

Hydralazine and lisinopril

Both affected my joints. I have the rash
now on my forearms only. It is very slowly
Fading from the lisinopril.

Hydroxychloroquine is a quinolone and this
family of drugs can cause PN or make it worse.

If your PN pain increases, therefore, you
Need to repot this to the prescribing doctor.
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Old 08-01-2014, 08:43 AM #6
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Thanks for the link on possibles, the doctor spoke with me about a couple, she just thought to start with a possible Lupus.
Good point! I am keeping an eye on these drug reactions, after Lyrica causing blurred vision and brain fog. It is hard to be subjective with the PN when it already is fluctuating, you don't know if it is a flare or a side effect.
So far, just dizziness, which wasn't a good thing to be working on a ladder yesterday, forgot about the new drug until my balance was effected. (duh)
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Old 08-01-2014, 01:46 PM #7
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Certain kinds of Lupus can affect other parts of the body. A butterfly rash is not always there. Also, you can have other diseases besides CMT if indeed you have it.
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Old 08-04-2014, 10:11 PM #8
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Quote:
Originally Posted by Jon_sparky View Post
Is there any overlap between SFN and Lupus?
I don't have a definitive answer, but I do have SFN with the only possible cause seeming to be lupus. I've had lots of testing and the only abnormality has been high levels of antibodies that are pretty much only seen with lupus (anti-dsDNA), positive ANA and anti-Ro antibodies. My rheumy says she can't say that I don't have lupus, but doesn't want to say that I do, because I don't have any of the more typical lupus signs, like inflammation, or skin or joint problems.

I started on plaquenil 3 months ago and haven't yet noticed any improvement, but it's hard to say because my symptoms constantly fluctuate and evolve. The main symptom at this time is nerve pain in all my leg muscles. Prior to this I've had burning feet; an assortment of other unpleasant and/or painful sensations; patchy, oddly-patterned areas of baldness and sensory loss on my legs; and autonomic issues like abnormal sweating and blood pressure regulation. I almost feel like I wouldn't mind having a diagnosis of lupus, if I could just find out what's causing all this--it's frustrating, isn't it, not to know for sure.
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Old 08-08-2014, 12:57 AM #9
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I don't have a definitive answer, but I do have SFN with the only possible cause seeming to be lupus. I've had lots of testing and the only abnormality has been high levels of antibodies that are pretty much only seen with lupus (anti-dsDNA), positive ANA and anti-Ro antibodies. My rheumy says she can't say that I don't have lupus, but doesn't want to say that I do, because I don't have any of the more typical lupus signs, like inflammation, or skin or joint problems.

I started on plaquenil 3 months ago and haven't yet noticed any improvement, but it's hard to say because my symptoms constantly fluctuate and evolve. The main symptom at this time is nerve pain in all my leg muscles. Prior to this I've had burning feet; an assortment of other unpleasant and/or painful sensations; patchy, oddly-patterned areas of baldness and sensory loss on my legs; and autonomic issues like abnormal sweating and blood pressure regulation. I almost feel like I wouldn't mind having a diagnosis of lupus, if I could just find out what's causing all this--it's frustrating, isn't it, not to know for sure.
That is so much like my symptoms, except my nerve pain is in both my arms and legs. I have the hair loss on my legs, that mirrors the nerve damage. I have also had problems with BP and pulse rates, but mostly after my Vancomicin IV's last year. I can relate to the frustration, and the lack of remedies to reverse this...
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