Hi All,
First of all, I am a new member to this site and I wished to thank all of you
for you tremondous amount of time, honesty, humor and guidance as we all find
our path through this illness.
I was diagonosed with PA this spring ~ after a serve flare up that started with
the top of my right foot and eventually included my right ankle and knee. I was
completely unable to bend my knee or ankle and could not walk ~ for a month my
life consisted of sleeping, sleeping, hobling around on my crutches, sleeping,
sleeping and sleeping!! The strange thing was, that without this major flare
up, I would never have been "officially" diagnosed and the feeling of not
knowing what was wrong and feeling like a "whimp" was worse. So, in a very
strange way, I am thankful for the flare up!
A little history ~ feel free to skip ~ I went thought the pain in my figures,
my hip and lower back, both knees, etc. ~ some days feeling fine others not
being able to walk without a noticable limp or sit without hunching over. For
two years I'd been in this state of being told it was OA, but knowing it wasn't
~ and actually telling the doctor it was PA. My first and only other flare up
happened 18 years ago ~ out of the blue ~ and hit the same ankle and knee in the
same progression. I suffered for about a month and then slowly it began to
improve or go into remission. Back then, there was no real options and I took
high dosages of Naprasin ~ at one point, one doctor gave me the RA blood test
and I was told it was positive (just over the boarderline), but in later years,
this test has always come up negative. Back then, no one including myself
thought to ask if I had any psorisis, which I had suffered with for years, but
it was mostly hidden under my hair (although it oozed and
burned and itched 24/7)... From then until two years ago, I went about life
with just slightly more aches and pains then most of my friends and relatives.
First the psorisis returned and then a month or two later, the joint pain. I
happened to notice the coincidence this time and mentioned this to my GP ~ she
referred me to a specialist thinking PA may just be my diagnosis, but the
rhematologist didn't think so mostly because I was "bad" enough yet and felt I
had OA. Two years and much research later, I indeed have what I suspected...
So, as soon as I was diagnoised, I began a treatment of Remicade and
Methotrexate ~ with the option of taking Vioxx or Celebrex as needed. Within
days of my first Remicade treatment, I was able to walk without the crutches and
after the second treatment, no longer needed the braces. Now, months later, I
take 7.5mg of Methotrexate weekly and receive Remicade treatements every 6 weeks
(although I'm looking to extend the time periods inbetween). I know I am very
lucky in finding a treatment that for now, works so well ~ without many side
effects ~ and I am extremely greatful to have most of my life back.
What I am interested in (FINALLY, the point of my e-mail) are suggestions,
expierences with alternative options such as diet, yoga, meditation, exersize
and acupuncture. While the side effects of my medications are minimal compared
to the gain, they do exist (mostly headaches and extreme fatigue after the
remicade treatments), I intuitively know I would be better off on many levels if
I could reduce the medications. Having lived in remission for years, I guess I
have the hope I can return if I reduce my stress (I believe a major cause for
the flare up) and take better care of this body I have taken for granted, I can
begin to heal some on my own... Even if I can combine alternative methods with
my meds (and reduce them some), I feel it would be a win.
Best Wishes,
Karen