I have an appointment with my Doc next week..she is just an internist because the only two Rhuematologists in my area are NOT accepting new patients..go figure my luck So she is beside herself not sure what to do..I think she is basically waiting me to do the research to help her figure it out. I feel that she will pretty much try to help me get any medication I feel I need that may help. You are right the insurance company is the one that will give me trouble. I am in a battle with them right now so they will pay for Restasis..because they figure dry eyes is not a serious condition...just use visine...lol. Like I haven't tried every brand of over the counter eye drops in 15 years. Get this...they say that since there is no official proof that I have tried the over the counter drops and that they don't work for me..they will not pay for restasis unless I have all the eye tests done yet one more time. Tired of jumping through hoops with broken legs... I am thinking about Sulfasalazine which is an older medication and from what I can tell from the info a nurse gave me..cause she takes it...it has fewer side effects than Plaquenil and is better than killing immune system with steroids or cellcept type meds. For the neuropathy I am thinkng about trying Acetyl Carnitine...an over the counter supplement that is showing through research to help with nerve pain and MAYBE can help regenerate nerves. Though my pain is so bad somedays where I can't walk very well, I am trying to avoid narcotic pain meds. I have always had a high threshold for pain..seems it runs in my family luckily....so I am going to keep hanging tough without it for as long as I can. My doc is real good because over the past 15 years she has repeated the autoimmune tests over and over again to see if anything shows up in blood. Shows that she realizes that I can seroconvert at any time. She did say that hopefully I never do convert..because this would be bad to have inflammation markers in blood....can't be a good thing.
But anyway thanks for your reply.....I am just walking frustration most days trying not to give up. Take care...Mary