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Hi I am new to your forum, I was searching the internet looking for some information on neuropathy and if it was connected to SLE and I found your forum. I was diagnosed with SLE over 14 yrs ago. The majority of my symptoms are joints and muscles. Recently I have been experiencing some severe pain behind my right knee that radiates upward it occurs when I am sitting more than standing. I had an EMG done and it shows nueropathy. My primary has not subscribed any new meds yet I am taking motrin and plaquenil for the lupus. So I was trying to do my own informational search. Thanks for being here
 

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The Other Illinois Tammy
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Champ,
Hi and welcome to the site. I am sorry that you are having trouble. Have you tried the heat creams (like icy hot)when you get the joint pain? It helps sometimes for me with the joints but I also have a pain pill (Ultram). If you still have the problems than you should contact your doctor and ask for something to help you. Good luck with getting everything under control.
 

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Hi champ and welcome :welcome:

Yes it's a reasonably common problem with SLE - the peripheral neuropathy.
Do you see a Rheumatologist who looks after your SLE? If so then mention you were positive on the test and he will either refer you to a Neurologist or keep an eye on you himself. There are meds that will help the pain, generally things like Gabapentin (brand name Neurontin). It's something that has to be monitored because if it goes and on and gets worse rather than coming and going it can cause permanent nerve damage. If they feel this is starting to happen then they will want to control the disease more aggressively with immunosuppressants added to your already existing regime.

Hope this helps,

love
Lily
 

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Hello champ and welcome :)

I too suffer from peripheral neuropathy. For me it affects my feet and lower legs (as well as hands and forearms) more than anywhere higher up though I did go through a phase where it spread further.

On the whole mine remains relatively stable (it stabilised a lot when I was put on immunosuppressants) but I do take something for very severe pain I was getting in my feet whch meant I couln't stand from it. My rheumy looks after everything except this (and other neuro problems) which the neuro deals with.

bye for now,
Katharine
 

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Hi Champ,
Welcome to the board.
I have been dx with sle for 20 years. I also have peripheral neuropathy in both legs, one worse than the other, and both hands. I have been on neurontin for years, originally to control migraines, but it also helps with the neuropathy. I agree that a neurologist or rheumatologist are the best options to keep an eye on this. My lupus care is managed by my rheumatologist. I also see a neurologist for the cns/other symptom management.
Sally
 
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