's History

[Guest guest]

Okay, Heidi, here it is -- finally:

I'm 39 years old. I was born in Michigan and grew up there. 13 years ago I

moved to San Diego, California. I have a wonderful husband, Jim, and two

children. is 19 years old and is 6 years old. I am a

paralegal and work full-time.

In 1999 (maybe as early as 1998) I started noticing odd aches and pains. For

no reason, the joint of my big toe would feel broken. A few months later my

ankle would feel sprained and feel hot and swollen. A few months later my

pinkie finger would feel sprained. It was a while before I noticed the

pattern and mentioned it to my husband. We just thought it was peculiar.

Then my ears began to flare, first one then a few months later the other.

It felt like a burn and would be bright red and very painful. In September

of 2000 one of my eyes began to hurt and developed a bright red spot that

looked like conjunctivitis but was extremely painful. It did not itch or

burn like " pink eye " but my eye appeared swollen. The pain was intense,

especially when my eyes changed focus. I went to see an opthamologist who

diagnosed it as nodular episcleritis and prescribed fluorometholone ointment

for the affected eye. He told me to go to my primary care physician and

wrote down the blood work I should have done. He told me that the

episcleritis was caused by something else and I needed to find out what was

causing it. At that time, he thought it might be gout or some type of

autoimmune problem. By the time I got around to seeing my internist, my

other eye had flared and one of my ears. When the blood work came back my

internist referred me to a rheumatologist. My sed rate was 110 and the RA

Factor (Rheumatoid Arthritis) test came back positive.

Within a week I had an appointment with the rheumatologist and she diagnosed

me with RP on my first visit. That was in November 2000. She prescribed

Colchicine for the flares and ordered additional blood work and urine tests.

My urine tests kept coming back with blood and protein in it so my

rheumatologist sent me to a kidney specialist (nephrologist). Both my

rheumy and nephrologist consulted with each other and put me on 15 mg/week

of Methotrexate. Lotensin for blood pressure to help insulate my kidneys

from the damaging effects of the RP and Folic Acid to counteract the side

effects of the Metho. I still take .6mg of Colchicine, twice a day, at the

firt sign of a flare.

In December of 2000 I had an echocardiogram with normal results. In January

2001 I had a kidney biopsy that confirmed the RP involvement. One evening

in March I suddenly had severe pain in my right side and was running a low

grade fever. After calling my rheumy, she sent me to the emergency room.

The ER docs thought it was a kidney stone but nothing turned up on the MRI.

After 3 shots of morphine, the pain subsided and I was sent home. My rheumy

and nephrologist can't say for sure what it was but suspect it was

inflammation of the kidney. A week later my left side did the same thing.

From April to August, my blood work was normal and I didn't have any flares.

With each test the amount of blood and protein in my urine decreased. Then

in August I screwed up by going on vacation and skipping a dose of the

metho. Big mistake! Both ears and one of my eyes flared at the same time. I

am still trying to get the flares back under control but continue to have

occasional ear and eye flares, rib and back pain. Recently, my nose was

burning and aching. At firt I thought it was just lack of humidity and

dryness caused by the furnace. It never turned red or swollen but I took the

Colchicine for 5 days and it went away without getting worse. My rheumy has

referred me to an ENT to do some baseline tests for pulmonary and auditory.

The flares are few and far between right now and not nearly as severe or

long lasting as they were before I began taking the meds. I continue to

have trace amounts of blood in my urine but it is almost insignificant. The

meds seem to be working and I'm hoping I'll get back to the flare free stage

without having to take prednisone.