I was just recently diagnoised with limited wegener’s and was presciibed 50 mg prednisone and 150 mg cyclophosphanide for the last week I am up all night coughing. Does this go in to remission easily or will it take a while.
Hi Tom:
I am indeed sorry to hear that you have been diagnosed with Wegeners but at least according to you it is limited. Mine was not. I had a full blown case of it. Sinus, lungs and kidneys… I too took prednisone, cytoxan and Bactrim. I was on it for a long time and I think that is the secret to putting it in remission. Unfortunately the cough goes along with the disease and many more symptoms as well. I had night sweats something awful. Sometimes i think they try to get you off the medication as soon as possible because it does have side affects but I think it is probably important that you take it long enough to get it out of your system and worry about the results of the medication when its over. I would like to hear from you again because I think a support is very important. How old are you and where do you live.
Let me hear from you again Tom and good luck you and just stay with it and keep your chin up.
Rhoda Greenlaw
bobcat115@verizon.net
----- Original Message ----
From: thomasdw wg-cpt4141@lists.careplace.com
To: bobcat116@verizon.net
Sent: Saturday, June 9, 2007 3:22:11 PM
Subject: [wg] wegeners
I was diagnosed about five years ago with limited WG. The next time
you go to your doctor just ask him about Rituxan and Cellcept. I am
not a doctor so I don’t like to give advice. I started the same
treatment you are on… there are many side effects.
Good luck.
On Jun 9, 2007, at 2:22 PM, thomasdw wrote:
Hi
I too was on cellcept. But at the beginning as soon as they diagnosed my condition I was put on cytoxan and large doses of prednisone Now we all know that those drugs can have side affects but in my case i suffered no such side affects. The large doses that I received were essential since I had a severe case of WG. Severe sinusitis, nodules in both lungs and kidney involvement which led to failure. One day coming out of the shower I noticed red dots on my legs (another symptom) I was diagnosed about 3 weeks after the first symptoms appeared so you see the disease progressed rapidly. My care was phenominal and I give all the credit in the world to my Dr’s in Boston. I have been in remission for 9 years which is just amazing for this disease and no side affects at all. I think the secret to my recovery was staying on the drugs long enough to knock it out of my system. I think you have to get rid of the disease and worry about the side affects later. I received
dialysis eight times and the same for plasma foresis. I FEEL GREAT. My Nephrologist watches me very closely with blood work etc. I would wish that all of you and anyone you know with this lousy disease the same result that I have had.
Rhoda Greenlaw
bobcat116@verizon.net
----- Original Message ----
From: alangt19 wg-cpt4141@lists.careplace.com
To: bobcat116@verizon.net
Sent: Monday, June 11, 2007 8:36:11 PM
Subject: Re: [wg] wegeners
Thank you for sending such an incredibly positive e-mail re: your prognosis. This is scary stuff but it appears that with the right treatment, drs., etc. that everything will be ok. Thanks again!
Amie
-----Original Message-----
From: rhoda wg-cpt4141@lists.careplace.com
To: amieaustin@aol.com
Sent: Tue, 12 Jun 2007 9:23 am
Subject: Re: [wg] wegeners
See my story for a personel trip through wegener’s.