Re: Sally/ Survey

[Guest guest]

Sally, I agree with you, we need a survey, so I will make on up here. LOL

What symptoms have you had with RP?

My flares started with my outer ears. They have progressed to my nose and

ribs. The RP has done damage to my aortic valve and my mitral valve. My

joints are really starting to hurt now, but don't know if it is just old age

or RP. LOL My throat use to get real hoarse, but doesn't do it so much now.

My inner ears do get sore and I use to feel pressure in them. That seems to

be gone now. I have optic migraines also.

Sometimes it's hard to tell if it is RP or something else. LOL

Did you have symptoms a long time before that now seem related to RP?

At 23 years old (I'm 50 now) I was diagnosed with costochondritis. I was

diagnosed at 25 with TMJ, there was no cartilage in my jaws at all. I have

always had joint pain and had problems with my hips and shoulders since I was

small. Over all, I was very healthy though and didn't go to drs much at

all. I just hurt. LOL

Have you had a major surgery?

I had my tonsils out when I was 2 years old, my tubes tied in 1981 and a

hysterectomy in 1993.

Were you around any toxins? (Pesticides, glues, solvents, fertilizers, fumes,

etc)

My father was a dry cleaner, and I was always around toxic fumes and

solvents. I worked with a lot of shrink wrapping and the toxic fumes were

terrible. I have always loved to garden and our house is built on an old

almond orchard. The ground is full of toxins. They use to crop dust right

over our house and if I was outside, I would be wet from it.

What medications have you taken for RP and what was your reaction to them ?

I was first on Pred and Vioxx. The pred put on almost 50 pounds on me. My

feet and hands swelled and I have a moon face and buffalo hump on my neck.

My stomach looks like I'm 9months pregnant. My bone density test is normal,

which is great. My eyes and blood sugar are fine too. I make sure I always

keep my appts to have my eyes, bones and blood sugar checked. I also take

medicine to protect my stomach.

When that didn't control the ear flares they added Methotrexate. I was on

that for a year (25mg) and was unable to decrease my pred below 25mg. I was

only slightly nauseated on metho, but it did make me tired and my hair

thinned terrible. I did get migraines in the beginning, but as I adjusted to

the meds they decreased.

Then I was put on Imuran and it made me deathly sick (don't know why).

I then talked my PCP into antibiotic Protocol and was put on Biaxin. I was

able to start reducing my pred and got down to 8 mg. My body did feel the

toxins being released and still does. But I feel it is for a good cause.

My rheumy wanted me on something else so they added Plaquenil 400mg. It

made me sick so I lowered to 200mg. This does does not bother me at all.

I have gotten my pred down to 6mg, but because of a pharmacy mix up had to go

up to 10mg. I just lowered to 9mg today and hope to continue til I'm at ZERO!

Please everyone, feel free to add any other questions that you might want

answered. We also have a place on our list site that anyone can take a poll

on a question you like. If you don't want to ask it, please just forward it

to me and I will put it on the poll. If you are new, go to the site and take

the polls that are already there. It is interesting.