Posted 12/6/2007 9:11 PM (GMT -6)
I have lupus-caused/related neuropathy....don't know where the idea they can't be related might have come from...

it isn't permanent (so far) but comes and goes as lupus inflammation comes & goes

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 12/6/2007 10:58 PM (GMT -6)
I have the neuropathy, too, in my hands/lower arms and my feet. Like Lynnwood, mine comes and goes as my flares come and go. I have lupus and RA, as well. Hopefully your new med will help!
Audrey Ann
Lupus and RA and LOTS of Medications!


Posted 12/6/2007 11:12 PM (GMT -6)

Oh well thanks for responding everyone it was my GP who said that he has never seen a lupus patient with neuropathy. Mine isn't constant either it's more like little electric shocks all over off and on all day sometimes it's really bad and sometimes not so bad.

UGH Hippi my mouth is GROSS not so bad during the day as I chew gum etc but the morning I dread waking up for 1) fear of my eye lid ripping my cornea off and  2) the roof of my mouth ripping my tongue. I thought lupus was bad and the the things it brings, sjogrens is actually worse.

I am going to see my opthamologist to discuss getting punctual plugs in eyes I know a few people with dry who have had great success with them. Some say their eyes water too much now and they have to carry tissue. I will GLADLY take that over this current dry state.



UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 

Posted 12/7/2007 9:34 AM (GMT -6)
Yes, mornings are terrible for my Sjogrens. My eyelids are stuck to my eyes and my my mouth is bone dry and the outside of my mouth has dry crusty stuff on it. I see my rheumy on the 18th and am going to talk to him about it. I might have to try to gum for my mouth. I drink and drink, but my mouth always feel dry.

I'm glad you got more validation from other members here about lupus and neuropathy. The neurontin should help some. I take mine at night because it makes me sleepy and it helps me sleep well.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Posted 12/9/2007 1:58 AM (GMT -6)
I have SLE, Sjogren's, Raynalds, fibromyalgia, etc etc blah blah blah .....
definitely suffer from neuropathy. Have tried neurontin but the side effects got to me. Right now am trying the Lyrica. So far so good .... like the guy who jumped off the 12 story building and they heard him passing the 6th floor saying ..... sooooo farrrr sooooo gooood lol
pain and numbness in the hands could also be tendenitis. right now, i even have tendenitis in my shoulder ... it really hurts. dr wants to do some surgery on it .... yuck.
i have found myself blaming every thing on lupus. It seems that it can affect just any and everything and it is a great scapegoat ... Im tired ... oh its the lupus. .... im hurting ...its the lupus .... gaining weight ... lupus .... losing weight ... lupus ..... losing hair .....LUPUs....depressed .... lupus .....cant remember poop .... lupus... anything that is not normal ... and some things that probably are .... i lay it all on the lupus .... lol hey why bother having this disease if you can't blame everything on it?!?!?
Also, when it comes to drs/ you go to 100 drs... you get 100 different opinions. I have probably gotten more information and better advice from this forum than from any of the drs. I have gone to.
Reflection and experience supply us with wisdom; study and labor supply us with learning; but wit seizes with an eagle eye that which escapes the notice of the deep thinker and elicits truths which are in vain sought for with any severe efforts.

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