My Story

December 19, 2001

Well, Mrs. Nosey, Onery, Phone Bandit did not approve

of the list I sent in lieu of a " story " , so being

properly chastised, I shall try again. (Sorry, Heidi)

First off, it is very hard for me to talk about

myself. I don't enjoy it at all! It pulls me out of

being reserved!

My story goes back a long ways, so I don't know how

much any of the early stuff (if anything) had to do

with RP. I had always been the most healthy person in

the family. My mom always told me that I never even

had childhood diseases, and this way in the days

before innoculations for everything. Good health

followed me into adulthood.

About 12 years ago I began to get terrible joint

problems. Pain, swelling, stiffness to the point of

not being able to walk through a grocery store. My

doctor at that time only believed that you were sick

if your blood work showed positive for something. So,

she would pat me on the head and prescribe

anti-inflammatories. However, the pain never went

away entirely.

Six years ago, I began to have problems with dizziness

and vertigo. It was so bad that I would walk into

walls. Not only was I dizzy, but the room would spin,

and while spinning it was tilted. Makes me nauseaus

again just to think about it. This came and went on a

regular basis. By that time, I had given up on

discussing anything with my doctor, so I would just

lie down and wait for the dizzies to run their course.

At the same time I was having almost constant sore

throats and ear aches. When I did go to the doctor

for that, it was never an infection. Just a red

throat and red (inner) ears that they didn't want to

treat.

Four years ago, I began to have eye problems. My eyes

would feel as if there was a big stick poking into the

inside corners of my eyes. They they would feel as if

they were full of sand. Then came the swelling, even

more pain, then the white part of my eye would turn

bright red. I did begin to see my doctor for that.

She treated me for three years for " infections " , but

the only time my eyes would clear up was when she

would prescribe a very short course of steroid drops.

As soon as I would go off the drops, my eyes would go

bananas again. Since we are in an HMO, we cannot go

to other doc's without a referral. After three years

of begging for a referral, I finally demanded (and

got) one. When I went to the eye specialist he said

that the eyeball itself was horrible swollen. That

was on a good day! He did the Schrimmers test and my

eyes were " bone dry " . He put me on artificial tears

and two kinds of eye drops-one a NSAID.

I changed PCP's as I had a positive EKG and my doctor

didn't want me for a patient anymore. The new PCP got

the heart thing straightened away-sent me to a

cardiologist who did an angiogram and said I had not

had a heart attack. Anyway, after meeting with me a

couple of times, he sent me to the rheumatologist that

I am still seeing.

The month before I went in to see him, I woke up in

the middle of the night with the most painful ears

ever. Only this time it was the outer ear. Couldn't

sleep as I am a side sleeper! I was thinking that

somehow a mosquito must have gotten into the house and

feasted on my ears all night. Then, when I got up and

looked at them, I thought I had somehow gotten a

sunburn. But, it was Jan. in western Oregon, and that

made no sense at all. I remember thinking, " I've felt

this before, but it has never been this bad " . My ears

had the classic look that we all know so well.

When I saw the rheumy in Feb. I asked him about it and

he told me a bit about RP and said it was very rare

and something that I did not want to have! DUH!! He

started treating me for inflammatory arthritis by

immediately putting me on a trial dose of prednisone.

When he saw how I responded to that, he started me on

Sulfasalazine. That gave me a rash so had to stop.

Next I tried Plaquenil, with no success. Next was

MTX. I did great for a time on MTX, Folic Acid,

Prednisone, and Arava. The side effects of MTX got to

me and we had to discontinue that one also. Tried it

in injections, and that didn't help.

Currently I am on Azathioprine (Imuran) 150 mg per

day, Arava 20 mg., Prednisone, 4 mg right now, but I

don't know if I am going to be able to hold it here or

not. I take Enbrel injections twice each week. I also

take HCTZ for the high blood pressure that two years

on Prednisone has caused. Eye drops are artificial

tears and Patanol four times per day, and Acular 2

times per day.

My dx's are RP, sero-negative RA, mixed connective

tissue disease, keratoconjunctivitis sicca,

degenerative disc disease, and TMJD. I have had ear,

eye, nasal, chest, and joint flares with some possible

minor trachael involvement.

I saw my rheumy today-a 45 minute appointment. I am

to go back up to 5 mg of pred and continue on enbrel

while they start the paperwork to get me switched over

to Remicade. He said that is my best chance (right

now) to ever get below 5 mg of pred. My head is

swimming right now with all we discussed, so I am

going to start checking out Remicade on line. Has

anyone in the group ever been on that before?

Well, I think I have said quite enough, and probably

too much, but that is my story!

You all take care! Sharon

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December 19, 2001