I was diagnosed back last Fall with this disease. It seems that none of
my doctors know much about it. No one has has a patient. Is there
someone else out there that has it? Does someone else go through
constant pain in some part of their body? What medications are you
taking to help with this if so?

Hi Barbara,

I have Ankylosing Spondylitis and Psoriatic Arthritis. The treatments
are similar enough that a good RA specialist should be able to treat
you. Or you can search for a RA doctor that also teaches at a medical
university (they have to stay up with everything).

It is important that you don't let them just give you something for
pain alone. Just like with RA, you have to slow down the disease damage.
I started taking Arava when it first came out and it stopped the
progress, but is wearing out now, so my doctor has added back MTX
so that now I take Arava and MTX. I also take Darvocet for pain
and Celebrex for inflammation. You can also visit -
http://www.spondylitis.org/

Ray

Barbara Crumpton wrote:

Barbara Crumpton wrote:

Your writing sounds like you've only been to GPs or family doctors.
You must see a rheumatologist (RD) - a specialist in arthritis - for
proper treatment.

I was diagnosed with AS in 1977 after suffering with stabbing pains
in the lower right back in the morning. I also began to exhibit some
stiffness in the neck.

My doctor was an orthopedist who really wasn't in tune with arthritis.
He prescribed Indocine and said I should use crutches to prevent
wear and tear to my hips and knees, but he never suggested any
exercises or other treatment. I took up square dancing instead.

I was lucky to find an insert in the Indocine that described some
upper-body stretching exercises, which I still carry out on a daily
basis today. I can perform them while at the computer -- just
shove the chair away from keyboard for 10 - 15 minutes every
couple hours. But where I really obtain a greater range of
movement or ROM is under a very HOT shower head.

Swimming and bike riding are also excellent exercises. Even a
stationary bike it good. Avoid high-impact exercises such as
jogging and tennis. And very important is keeping your weight
down. The more you carry around, the more punishment your
joints -- especially the hips, legs and knees -- are going to be
subjected to.

I had a so-so RD from 1991 to 1999 -- board certified in both
rheumatology and as a family doctor. She was a bitch. Finally
located a outstanding RD in early 2000 who referred me to a
surgeon for a hip replacement that should have been done 6 - 8
years sooner.


I now have constant pain in the neck and occassional pain or
tenderness in both legs. I'm on Remicade -- a rather new drug --
to treat the AS itself. And I take Sulidac for the pain.

That is the key to the total picture. A disease modifying drug
(DMARD) to slow down the course of the disease (there is
no cure). And an anti-inflammatory (NSAID) for pain.

Please visit alt.support.arthritis and join a few others with AS.
Ashley is a 19 year-old gal who will start college this fall, and
Aim is a 30-year-old lady who works at Starbucks' HQ.


Also drop in at these fine web sites:

http://www.arthritis.org (Arthritis Foundation)

http://arthritissupport.com

http://www.spondylitis.org (Spondylitis Association of America)

http://kickas.org

And please find and make an appointment with an RD ASAP.