A little good news

[Guest guest]

I have some good news I'd like to share with you all that will maybe foster a

little hope to those that are new to this group. Here's my brief history: My RP

symptoms began in September 2000 and 6 months later (March 29, 2001) I was

diagnosed with RP and Wegener's Granulomatosis with pretty severe pulmonary

involvement. My treatment plan included Cytoxan, Bactrim and Prednisone. Now for

the good news: I finally started feeling a little better around the first of

February (2002 - that's 11 long months) and have been able to reduce the

Prednisone. I have been down to 5 mg of Pred for 2 full weeks. My breathing is

getting significantly better. My last Pulmonary Function Test showed an

increased FEV1 of 35% (it had been down to 21%). I have an appointment back at

the Mayo Clinic on April 22 and hope to see the FEV1 even higher. My doctor gave

me some Ultram to help me deal with the painful Prednisone withdrawal and it

helped tremendously. Now I don't even need them.

So don't ever give up hope. I'm sure there will be RP setbacks for all of us,

but at least I have a better understanding of how to help myself. One of the

things I did when first diagnosed was to come up with a plan including 5

strategies that have helped me keep focused. They include: medical (I have a

great bunch of doctors); physical (exercise, exercise, exercise); nutritional

(controlling that diet is tough but worth it); spiritual (I keep working on

letting go and letting God); and emotional (I'm blessed with a wonderful family

and then there's all of you in the support group).

I've learned so much from everyone in the RP family and keep finding out more

with each email. Thank you to everyone in the support group.

My prayers are with all of us and our families. God wants to help each one of us

get through all of this. So let Him. Keep the faith.

Love to you all, my friends.

(KC)

--