NanTom

[NanTom]

Hi!

So grateful to find this site. I will probably do most of the writing for hubbie who was diagnosed 4 years ago (shortly after retiring from a career in education) with numb foot and kidney involvement. After Cytoxen for a year, including becoming diabetic due to high prednisone, he went into remission (and no longer was diabetic)! Imuran was tried twice, but always resulted in a very high fever. Cellcept has been the drug used for several years. At one time he did so well the Rheumy almost took him off of the one pill per day. Since May 2010, he keeps having flares. He is now on 6 pills per day (max for Cellcept) and keeps having flares and can no longer get below 10 mg. prednisone without a flare, so considering Retuxamab infusions. Now we add the new diagnosis of shingles to the mix.

We welcome any information, help or encouragement. Maybe some of our experiences could be of help to someone else. We are happy to help if we can!

[Hammy8241]

Welcome NanTom.
With a Username like that have you thought of starting a Sat Nav company?As you may be able to tell some of us have a sad/wicked/weird/no (delete as applicable) sense of humour.

I hope you find the resources held within the threads informative and useful. That said please remember that most of here are only relaying out experiences of WG.

I can't comment regarding hubbies treatment as I have different involvement and on different drugs but I'm sure that someone will be along soon with something constructive to say.

Enjoy the forum.

[NanTom]

Hammy 8241

Love your pic. Mostly truly appreciate your advice to "start breathing again!" Need to start laughing too! Tom is the one with the sense of humor. Need to get him on this as I tend to be the "essential information" person (opposites attract - over 40 years together). Now, at the risk of embarrassing myself (sometimes naive), in front of who knows how many people...I am trying to determine just what a "Sat Nav" company is.

I'm going to put your advice on the frig...."Start Breathing!"
It should also remind me to laugh more!

Gratefully, NT

[chrisTIn@]

Hi Nan Tom. Thanks for sharing the experiences of your hubby with Wegener's Granulomatosis here.
How is he doing now?
Is there already a treatment for the shingles?

Wishing you and your hubby all the best.

[Sangye]

Hi NanTom, welcome to the group! (I have no idea what a Sat Nav company is, either!) I'm sorry your husband is flaring again. Where are you located (generally) and does Tom see a Wegs specialist?

Why is his doc considering rtx if ctx worked so well already?

[Hammy8241]

Hammy 8241

trying to determine just what a "Sat Nav" company is.


Gratefully, NT

Sorry guys!

Satellite Navigation (SatNav) GPS System - Tomtom name of product. Weak attempt at joke
www.tomtom.com

Can I blame it on the pred??

[NanTom]

The other half at our house, the one with the sense of humor, got it right away! thought it was great! And, brought the laugh we all need! Keep up the good work! Thanks! NT

[Sangye]

LOL I thought it was something like Saturday Navel-- websites for who have nothing better to do than contemplate their navels on a Saturday night.

[NanTom]

Hi Sangye!
Hubby has been seeing a Wegs specialist, as well as several consults with Johns Hopkins docs. thankfully! Cellcept worked well for several years, but since last Spring he keeps having flares, even though now on highest dose, can't get below 10mg of prednisone after each taper without another flare so assume Cellcept no longer working. New challenge - shingles diagnosis. He started Acyclovir and bumped up to 40 mg pred. yesterday. He has well over 200 blisters and I have stopped counting! Darn suppressed immune systems - We all agree about that with each other, right! Thanks so much! NT

[NanTom]

Hi Chris!

Yes, Acyclovir and several other anti viral meds along with the very familiar prednisone are part of the shingles treatment. We also read online, that a "sunburn gel" with Aloe and lidocaine helps blisters and nerve pains. It was a soothing help! As I understand the antivirals work pretty well with folks who don't have compromised immune systems. Checked my nutrition books again for best healing foods and supplements for nerve and skin problems. If anyone else out there suffered (my sympathies!!!) and recovered, and you have any other suggestions which may have worked, we would love to hear them. Thanks for your good wishes!!! Our best to you also! NT