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Old 03-20-2013, 02:34 AM
Synnove Synnove is offline
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Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Synnove Synnove is offline
Member
 
Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
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Enbloc
I am taking 200 mg twice daily for leucocytoclastic vasculitis. I have had tests etc for months now to find if there are other autoimmune diseases involved as well. Yes I did have burning neuropathy symptoms for some months before starting Plaquenil, only milder, and I did not realy know what all of this was. I also had some central nervous system symptoms even before that. It has become worse and worse to the point that right now I have numbness in the complete lenght of all extremeties. It is mainly sensory. But I have had some heavyness in arms with the parasthesia.
The neurologist diagnosed me with polyneuropathy. Will have some testing next week.
I was told there was a strong possibility I could have sjogren's due to the strong neuropathy. I have demyelinating brain lesions as in sjogrens. But both blood test and lip biopsy was negative.

I was reading regarding the neuropathy side effects. But I have also in the last 3 days had eyesight symptoms like lightflashes 3 times and blurred vision in left eye visual field. Effects like this from Plaquinil, from what I understand, should not happen before very long term use, So these symptoms, at lease the blurred vision might be due to Lyrica. And I have had some issues with scotomas before. I have a very good opthomologist, will see him tomorrow.
I was also thinking that while we are searching for answers for further diagnosis, and the neuropathy burning is only getting worse, perhaps it is best to stay on that medicine that at least is supposed to alter and/or stop the disease( hwatever it is)
But I got so frustrated and feeling so awful also being on Lyrica which is like walking in and out of anaesthesia
I E mailed my rheumotologist said I want to stop both this meds. She mailed me back, said I can stop the Plaquinil if I want( I think she had said before that the vasculitis is now stable, just to stay on it while further testing going on) I gues she gets tired of me. But she said stay on the Lyrica, and let the neurologist look after it next week.
So I will see. I did stop the Lipitor.
Thanks for your input
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"Thanks for this!" says:
en bloc (03-20-2013)