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Date Joined Oct 2008
Total Posts : 257
   Posted 12/10/2009 6:12 AM (GMT -6)   
So ive been on plaquenil for 6 months along with naprosyn and neurontin was added 2 months ago, now they are adding cymbalta. They are really really being stubborn about trying prednisone or anything else that will help the actual lupus instead of the pain. This makes me sooo frustrated because I have still had flares EVERY month and even though some things are better, my disease is NOT controlled, in fact if you have read my other recent posts, it seems to keep gradually getting worse! My burning pain/tingling is spreading in patches(thighs & knees, then down to legs/feet, then to my arms in oct, and in nov to the back of my shoulders and neck/top part of spine inbetween my shoulder blades). Even with all that my 2 EMG's/Nerve Studies and 1 skin biopsy for small fiber nerve involvement are negative. What I dont get is even with Neurontin increased up to 600mg 2x/day and then back down to 300mg 3x/day to add the cymbalta, it has not helped the pain. Why do my drs insist on treating pain and not give me something to control it??? Anyone else have this problem? :/ -Brittanee   
*Lupie Britt*
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.

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Date Joined May 2005
Total Posts : 6949
   Posted 12/10/2009 12:31 PM (GMT -6)   
Has anyone figured out the connection between nerve inflammation (which it sounds like you have) and pain yet? I don't think that even the researchers have -- could your doctors be distracted by the "pain" word and thus not addressing the inflammation?

I think you should be getting prednisone to help control the inflammation, which is the source. Alternatively, something like Imuran, Cellcept, or MTX may help you, but here in the US you'd certainly be on prednisone by now.

Here I would also recommend finding another rheumatologist that could offer a second opinion, but I don't know enough about your health system to know if that's possible for you. (Are you seeing a neurologist or a rheumatologist now?)

Is there any harm in asking the drs directly -- why are you treating the pain and not the source of the pain?

Sorry you are having to "dr yourself", hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

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