Daughter with RP

[Guest guest]

Bob, Hello and welcome to the greatest support group ever. I'm so sorry to

hear about . Has she definately been diagnosed with RP? Gee, as

you will soon find out we are all so different. We all take different

medications and have different symptoms. Prednisone and metho are pretty

standard medications for RP. It seems to be a good combination for most.

How high of a dose of Pred is she on? The methotrexate usually takes around

3 months to fully take effect. Usually one is able to start lowering the

prednisone when they are flare free. But this must be done slowly and under

a drs. supervision. The prednisone should work fairly fast. If she sees no

improvement, I would have her contact her dr to see if she needs a higher

dose of pred. We need to stay as flare free as possible. The longer the

flare the more damage that can be done.

RP is not a curable disease, but it sure is treatable. If the metho does not

work for her there are other medications for her to try. We have some

members who are in remission and are feeling great and leading a normal life.

RP is not a death sentence like some articles make it sound.

I'm sorry she had to go through so much before getting help, but you will see

that most of us have had to do the same thing. There just isn't awareness

out there for this disease.

I hope she sees improvement fast. Please feel free to ask all the questions

you need to. We have over 200 members and they have lots of knowledge.

Where do you live? I'm from Calif.

Hope to hear more from you and an update on .

[Guest guest]

was a 30 year old healthy young lady when her ear began

swelling and turning red after 3 surgerys and loads of antibotics, we

began to question the doctor who said there was nothing wrong with

her. So our search began, finally we found a doctor who cared and

began to refer us to a rheumatologist who started her on predisone

and methorexate, how long does it take for this to work or does it

help control this disease?

thanks

bob