I was
diagnosed with Stills disease in June of 1999. I had known for two weeks
that they suspected it but it really hit me when my rheumy came in and declared
it. I'd been having problems but for a while they really couldn't figure
me out so they just treated my symptoms. I was prescribed Lodine,
Azulfidine and Plaquinel. They don't want to start putting me on
prednisone since I'm so young (22). I was only having joint inflammation
problems.
Once the
Azulfidine kicked in I started getting the prickling/tingling sensation in my
hands and feet really bad. Then I got the rash from head to toe and
itching like crazy! Then I got a flare with the fevers and chills. I
called my rheumy to tell her and since I had a rash she wanted to see me right
away, they've been so great. Everybody came in to look at the rash. My
rheumy took one look at it and said I had Stills. He told me that the
British have found that prescribing azulfidine to patients with RA and Stills
distinguishes the two. The patients that have Stills have a bad reaction
to the azulfidine and they get a rash. I though that I should notify
everyone
about it because I wouldn't wish this rash on anyone.
They put me
on prednisone again but just tapered doses for a week. I have found some things
that have helped with the rash... LANACANE spray does wonders. It has a numbing
ingredient which I believe is the BENZOCAINE.
I tried the
benadryl cream, spray, and tablets, they didn't seem to do anything for the
itching. My rhumatologist told me that I've had this for at least 5 years.
In 1995, I was told I had hepatitis, but the DR's couldn't figure out what
caused it, I didn't have A, B, or C. I had a rash from head to toe but the
doctors just dismissed it. When
I complained about the pain and joint stiffness it was dismissed as a result of
being in bed for weeks. I was told that I had gotten a virus along the way
that progressed into infecting my liver, but no virus was ever found.
I did have the same rash that I do now, but my dr. just wrote it off as
something else. I am now told that it was my first flare. From then
on every time I got sick and got a rash my doctor would just put me on
prednisone since it was the only thing that would
make me feel better, just suppressing my symptoms.
When I had my second flare in Sept '98, I started suspecting that what I had and
the hepatitis were related. My second flare lasted about 5 months and the
doctors started suspecting that it was an autoimmune disease, probably Lupus.I
was also diagnosed last year with Hashimoto's thyroiditis which means that my
thyroid is under active (hypothyroidism). My rhumey told me that it is
very common for people with autoimmune diseases to have more than one, which
I guess my thyroid turned out to be.
Being diagnosed at least gives me some closure. I've found myself afraid
to plan or commit to things that I normally would just jump at.
Then I have
to remind myself that I've had some pretty good years and have still had this.
I'm kinda glad that I didn't get diagnosed with my first flare, I really
think that would have prevented me from doing some of the things I did in
college. I do have to consider myself lucky too. This year has just been
particularly hard, but I am confident
things will get better and life will go on. I've been lying in bed thinking the
past few days on what my life is going to be like now. I ask myself if
this changes all of my plans, or just delays them a little bit. Then I
think about how stronger a person I am for enduring this.
I have learned so much about myself and would not trade my days in the hospital
for anything in the world. It made me
focused and made me put my priorities in order and I think that I am truly a
better person for it.
So many
people go through life just taking their health and time for advantage. I
joke with my friends that I think everyone should get really sick just once for
the learning experience because it really does teach you a lot. Not that I
really enjoy being sick or
anything, I just think that it gives you a better appreciation for life and all
the simple things. I think that God does everything for a purpose and I'm
just trying to make sense of it all. I keep tell myself that God
must have a special plan for me to do all this, so I better pay attention and
start learning
something!