Symptoms

Wegener's Granulomatosis
#1

My mother was diagnosed with Wegener’s in February. Before this disease she was a very strong healthy woman who was rarely sick a day in her life. It is very aggressive. She has been told recently that her kidneys have no chance of recovery and that a transplant is not an option due to the disease. She has severe muscle atrophy throughout her body and nerve damage in her legs and arms. She cannot feel her feet at all. She has a very difficult time walking and uses a walker or wheelchair.

Is there anyone else who has any of these symptoms with this disease?

My mom is too weak to sit at the computer but she has lots of questions, so I will ask them for her.

#2

Wegener’s almost knocked out my kidneys too. I was one of the lucky 10% who recovered enough function to avoid dialysis. I was diagnosed 2 1/2 years ago, and was placed on a walker after discharge from the hospital. I’ve had to use a cane or walker since then. I am also post-polio, so I was attributing the muscle weakness to that, but it definitely accelerated after I got sick. Part of the problem was the anemia. When my blood count is in the double digits, I find I feel better. It took over a year, after I was able to stop the cytoxin, before I really felt somewhat normal. The first few months are hard. Be faithful with taking all medications because your health will improve.

#3

Thanks for your email. I will let my mom know.

shlewiss wg-cpt4604@lists.careplace.com wrote:

#4

I too have WG and I have severe leg pain, it started in the front of the leg, but now it is all over, from the knee to the ankle. It is so bad, it hurts when pants brush on them or when I lie down for the night. I have been given several pills to help with the pain, they take awhile to kick in at night, and I just lay there and try not to move my legs at all…I have been on cytoxin since July and I was just switched to cellcept, except that it is so expensive, I am waiting for my out of pocket to catch up so I wont have to pay for it. As a matter of fact, I feel so much better off those meds then I have in months. I hate to see how I will fill when I do start back on the cellcept, but we will see soon.

I hope you will be doing better, I think sometimes I am spinning my wheels with my doctors.

Judy

#5

I have written in the forum once before. And after reading some of the newer stories and the problems that some people are having I have to wonder if the secret to a remission for Wegeners lies in staying on the medication (prednisne and cytoxan) long enough to knock it out or at least send it into remission. I will repeat, that I am in remission now for about eight years after full blown Wegeners which involved sinus, lungs and kidney failure which i recovered from and my kidneys operate at 65 percent
which is great, I don’t notice any change in them at all. I am still watched very closely by a Nephrologist who takes very good care of me. periodic anca testing etc.

#6

I have written in the forum once before. And after reading some of the newer stories and the problems that some people are having I have to wonder if the secret to a remission for Wegeners lies in staying on the medication (prednisne and cytoxan) long enough to knock it out or at least send it into remission. I will repeat, that I am in remission now for about eight years after full blown Wegeners which involved sinus, lungs and kidney failure which i recovered from and my kidneys operate at 65 percent
which is great, I don’t notice any change in them at all. I am still watched very closely by a Nephrologist who takes very good care of me. periodic anca testing etc.