Looking for those with CIDP and RA!!
AnonymousJanuary 31, 2011 at 10:21 pm
I have had CIDP for 5 years and was diagnosed with Rheumatoid Arthritis early this fall. It took all summer to be diagnosed. Three rounds of blood tests because I have IVIg infusions (someone elses blood product running around in me), my SED rate is already skewed because of the CIDP and the list goes on and on. Finally, I say why don’t we take X-rays because I know the pain in my hands is not caused by nerves! Alas, I have bone degeneration in both hands and all the bones in my hands are gray, which means they are well on they way. My feet are also starting to degenerate. So, friends, not only are my nerves shot, but my bones are now going away.
The real kicker is that the vast majority of the drugs that are given to RA patients CAUSE demeylinating diseases! I’m feeling more unique every day. Not only that, my neuro tells me I’m special!
We are in the process of trying to put together a team to figure out how to treat me. I have been on 5 grams of methatrexatate which has made me very sick and has also exacerbated my CIDP symptoms which have been in check for 4 years. I have lost 40 pounds in six months and am at the point where I can’t lose any more weight without becomming unhealthy.
I had gone off the methatrex., but could not move my hands and my feet were swollen. I am back on it and probably will be on until I meet with the next two RA Dr.s in Feb.
Even taking the methatrex., IVIg, cymbalta and all the other meds, I have horrid neck and back pain that no one seems to want to deal with.
My pain cocktail at the moment is 90mg Cymbalta (nerve pain) 2 Aleve 2 Percocet (RA) in the morning. In the evening I take only 2 Aleve because the Percocet keeps me awake. Still the neck and back pain. Go figure.
Anyways….if anyone has CIDP and RA and has any insights or great treatment or pain options-please let me know.
AnonymousFebruary 1, 2011 at 1:58 pm
I have Adult onset Stills Disease, rare form of Juvenile RA. Onset seven years ago, was on life support for a week it caused inflammation around my heart and in my lungs, my wife said my whole body swelled. Iam now on 5mg pred, 8 tabs of mtx. Now may have CIDP, go for a biopsy in two weeks. I winder if the meds I take mask some of the CIDP. See neurologist at Johns Hopkins
AnonymousFebruary 2, 2011 at 11:57 am
From what I know the low dose of prednesone you are on along with the mtx probably wouldn’t mask the symptoms so much, but the RA and CIDP have similar ” aches and pains and weaknesses” that I have found. The biopsy for me came back negative but My neurologist had already dx me. BC wanted the biopsy before they would pay for the IVIg. It was the nerve conduction studies and blood work that gave me my diagnosis. Good luck to you at JH. Let me know what they find out for treating both. Right now I am looking at the stem cell therapy in Chicago.
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