Re: Re: suffering from RP

[Guest guest]

,

I'm so sorry to hear that you are suffering so. I wish I could offer you a

miracle cure but can't. But I can offer you hope that things will get better.

There hasn't been too much published about RP and what you'll find on the

internet is pretty out-dated and paints a pretty bleak picture about our future.

But this just isn't true anymore with the right medications.

I hope you're not suffering with your pain without seeing your doctor. Several

of us started out taking megadoses of Prednisone with pretty good results. Then

if you have a good doctor willing to learn about RP, you'll probably be put on a

longer-term treatment plan. But remember, the pain won't go away on its own, so

seek help.

I've been lucky in that my treatment plan is working for me and after a full

year on Cytoxan, Bactrim and Prednisone, I am so much better and life is good

again! I also go to the Mayo Clinic in Rochester, MN. In fact, I'll be there

this Monday (4/22) for appointments/tests and hopefully I'll be able to reduce

or eliminate the Cytoxan as it really makes me tired.

So don't freak out and think that this is the way the rest of your life will be.

No way! And you'll learn so much from this group. You can count on everyone

here to help you through the bad times and celebrate your good times too.

Take care of yourself.

(KC)

On Thu, 18 Apr 2002 18:53:29 -0000 michelle12371106

wrote:

you are newing diagnosed too? I am really having a hard time with

it. It really scares me to death, I used to be so full of life and

now I am left wondering how to get a hold of my life. I am in

constant pain, I wake up crying almost every night. Thank God for my

boyfriend who has tried to make the adjustment easier on me. I just

don't know when the med are going to start working. It would be so

much easier if someone could tell me why, when, how, and what. I

used to be such a go-getter, I mean I took charge of everything. It

is really hard for me to adjust to this lifestyle. I am currently

not working and it is driving me craaaaaazy. I can't drive

andywhere, I just simply can not so the things that I used to do. I

am scheduled to go to Mayo may 30, I hope that they can help. Do

you know of any books or literature about this disease? Anything

that would help me understand. My flares have been ongoing since

November, I have had it in both ears, my feet the past few months and

now they think it is in my left lung. I am scheduled for a CT needlt

biopsy on MOnday. It just doesn't seem to want to let go of me. Any

advice?

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU