weggie's storry

[gmyi]

My name is Moshe
I m also a W.G.. PT. and want to share my story

. I was diagnosed with Wegener's in September 2006, but the dieses starts in June 2006 with salivary gland inflation and mandibula join disorder I was treated with antibiotics and also hospitalized, I suffered of great pain in the m.j. they made biopsy in the right salivary gland and the result was there was giant sells in the gland
After 4 months of treatment with antibiotics and no improvement I got high temperature, swelling in both legs renal failure, pulmonary bleeding, DVT I can't eat for three days my mouth and throat were burning
Then I was hospitalized in intensive care for a week and half there I was treated with hemodyalisis with citrate and high doses of cytoxan and prednisone, they made an IVC filter insertion and treated with Plasma Foresees (plasma change)
After that I was with hemodyalisis for three months and the hospital change it to peritoneal dialysis for a month in half and then the kidneys had recuperated pertly and I don't need to have dialysis any more
Meanwhile I had anemia but it is much better after treatment with Arenesp
In result from cytoxan treatment I have some malfunction in my morrow that causes anemia and low immune system I got Herpes Zoster on my head and face and was hospitalized again I'm suffering from H.Z.N (Great pain in H.Z. area)
Till now I receive low dosis of medication and the W.G. is in remission I take Coumadin, Diseptil (antibiotic), Losec, and Lipitol
My condition till now is I still have renal failure, DVT in both legs and I have leg pains can't walk more than few steps or stand for more than 10 minutes and pain in the head and face as result of peripheral nerve disturbance in herpes area I have low red and white cells

[Twice]

Hi Moshe. Welcome. I hope your kidney function improves. I had shingles while on ciclophosphamide as well, and I have to say that the nerve pain lasted for some years after, although it did eventually go away.

I also have chronic anaemia and take EPO. It's great! (compared to no EPO). I've only had one DVT and that seems fine, now. I hope things work out for you.

Best wishes to you,

Sarah