Arthritis Insight-Member Stories-Lori

Lori's Story

My name is Lori. I was diagnosed with rheumatoid arthritis in December of
1996, at age 23, after 8 months of trying to figure out what the heck was the
matter with me. The funny thing was, it started off as a cold, a real nasty
in bed for 2 weeks cold that a friend of mine also got. After we were over
the sniffles, we both had fleeting joint pains. Hers went away and mine got
worse.

I started with 20 mgs of prednisone, plaquinal, and NSAIDS that changed daily
until I found Cataflam, which worked great and didn't hurt my stomach. I was
extremely scared the few weeks leading up to my diagnosis as my elbows were the only joints working and I became extremely claustrophobic, not being able to move.

The plaquinal did nothing to change the course of the disease. I kept taking
it and started methotrexate and darvocet (pain killer at bedtime) with it. I
slowly cut back my prednisone to as little as I could take and not want to
jump off a bridge. It's amazing you can gain 40 pounds in two months from
that stuff. I was on methotrexate for about a year and a half with some
minor decreases in my pain (and many colds) until March of 1999. I wound up
in the ER as I had had a 103 degree fever for a week, and was starting to get
extremely dizzy. Although the ER doc knew everything I was taking and my
history, he sent me home with some antibiotics for strep and told me to
alternate 2 advil with 3 tylenol every 2 hours. Still with a fever of 103
several days later, my primary care doc found I was in significant liver
failure with strep and a virus. Needless to say, methotrexate went bye bye
and never came back. Thank God for good primary care docs!

I then went about 7 months with just prednisone and cataflam, until October
1999. I was maid of honor in a wedding in Pennsylvania (I live in Colorado)
and was worried that I wouldn't be able to walk the aisle, and that the plane
trip would kill me. My rheumatologist suggested that I start Enbrel, as
x-rays revealed that the bones in my hands and wrists were becoming very
damaged. Because I had read some wonderful information about it on the
internet, I decided to give it a try. My rheumatoligist said it could take a
few weeks to start working, but it didn't take that long.

I consider myself extremely lucky to have found such a great drug. Within 45
minutes of the first shot, I saw my hands shrink. After 3 hours, I could
walk up and down my basement stairs by myself. Right now, it's the only drug
I'm on. Other than some "permanent damage" type pains, I'm pain free 99% of
the time.

I've really enjoyed reading people's stories. It makes me realize even more
how fortunate I am, and hopefully Enbrel will continue to work for me with no
side effects. I do have one important thing I would like to add though. In
many of the stories I read, people have had such problems with insurance
companies! One thing my rheumatologist did for me (and I am forever greatful
for) is she gave me a copy of my rights for HMOs under Colorado law. She
also told me that patients are their own best advocates and that when the
patient calls the HMO, things happen faster than when the doc calls. She was
absolutely right.

I would assume (maybe incorrectly) that most states have similar laws. I
know that in Colorado, there are many stages of appeal when your insurance
company denies a claim. The most important thing I learned is that they only
have 24-48 hours to supply you with a reason for denial. None of this 2 week
bologna! On top of that, the levels of appeal work for the patient. In
Colorado, the top level of appeal is that the HMO has to hire (out of their
own money) an independent knowledgeable doctor to review the case and
determine if the treatment is reasonable. I've learned (as like clockwork,
they deny my Enbrel every 6 months), that I can have my doctor fax the
reasons I need Enbrel to them. I then wait 1 day beyond my 48 hours, then
call them, telling them they've violated my right under Colorado law.
They've always been quite quick to dig through the reported "hundreds of
faxes" they get daily when I tell them "I'll hold."

Your stories have been an inspiration to me. I hope mine is to somebody as
well. Somewhere out there is a miracle. I hope you all find yours!