To Anyone - I'm a new member with lots of questions

[Guest guest]

To anyone,

I have just found this group. I was diagnosed with RP November

2001 and have been on Pred. since along with Naproxen. I have been

decreasing my dosage gradually only to have to up it again. I am now

at 5 mg per day. My hope is to get off Pred. Has anyone had sucess

getting off Pred.? Does any one have any suggestions to help supress

this disease - diet etc? It is very hard to find information related

to this disease. I was a healthy 38 year old in Aug of 2001 when I

had my gall blatter removed and developed a bile leak which put me

into the hospital for two weeks - I was very very sick - after

recovering I developed a painful ear which was treated for 4 weeks as

an external ear infection (On antbiotics for 2 months) - ENT had me

put vinegar in my ear because he thought I had yeast infection from

anitbiotics. Infectious Disease Doctor finally sent me to

Dermatologist who immediately knew what I had - RP - Am now being

treat by Rheumatologist.

Am I in la la land thinking this disease will subside any and I will

be able to get off Steriods? My ears are fine now but I do tend to

get hoarse when I do not take the Naproxen. My Dr. is not the most

informative person - I feel out of control and for a person who likes

to be in control, this is terrible.

I would love to hear from anyone who can help me.

Barbara