Good Morning

[PattyL]

I am very happy to have found this site. I was diagnosed over 20 yrs ago. I have been pretty lucky with only a few flares, however this time I am having a bad one. back on prendisone 40mg a day, kidneys,lungs,hearing,fatigue, having a kidney biopsy later this month, was scheduled but cancelled due to an infection. I know remission is possible just slow. I wonder some days how am I going to get through this? It is a miserable disease.

Wishing you good health.
PattyL

[annekat]

Welcome, Patty! I'm so sorry to hear about your bad flare after all these years of only a few less serious ones. It is helpful to all of us to remember that this is possible. Did you have kidney involvement before, or is that new? I'm only asking because some of us don't have it initially and then it may appear later.... I'm one of those who hasn't had it so far. Where are you being treated, and are you are on any immunosuppressant in addition to the pred? Or are they waiting for the kidney biopsy for that? Best of luck to you, keep us posted, and know that finding this forum is one of the best things you could have done!

[PattyL]

Hi there, Kidney involvement has been about 2 yrs. I hope you are not affected with it. I live in San Diego Ca. and have been going to Drs. at UCSD no immunosuppressants yet. I am having side effects from the pred now Dr is cutting back to 30mg daily I will see him later this week. The fatigue is horrible, muscle weakness, tingling in hands and legs didn't have these side effects last time. Don't really think the pred is helping to much. although my breathing is better. Not looking forward to the biopsy.

[mishb]

Hi PattyL and welcome to the forum.
I am so glad that you have finally found us.

20 years, gosh the medications and protocols would have been different back then, I'm sure.
I'm also sure, that once you are feeling better again, that you will be able to teach us a thing or two about being a survivor with WG

[renidrag]

Good Morning to you PattyL, as you can see we have some wonderful people here, willing to learn,help and listen. I am still in remission since 2010 with only a little blip last year but remain drug free. I wish you well and hope you can get back to where you were. You may ask your Doc about peripheral neuropathy around your legs and feet.
Dale