Hello S-We have several people with AS and several people with other
spondylarthrapies, myself included (psoriatic arthritis).  But I dont have any
answers for you.  But there will be folks along who CAN answer questions for
you.
Char

"Remember, I'm pulling for ya'. We're all in this together." Red Green

Hi there,
I'm here, sortof. I'm bad about checking in, and even worse at keeping in
touch. But I am 31, female, have fairly severe AS, live in Seattle. I'm
on:

enbrel
synthroid
cytomel
wellbutrin
topamax
spironolactone
percocet
sometimes xanax
occasional medical MJ when needed.

I think that's all of it. Seems like more as I sit down each week and fill
up that stupid pill box...

Oh, and lately, because I am groggy in the morning after taking the perc
and sometimes xanax at night, I've been drinking Diet Rockstar* on the way
to work. Upper and downers to keep functioning. I feel like Elvis.

I do pretty well pain-wise since the Enbrel. It's definitely helped a LOT.
If there is anything specific I can answer, let me know. If I space and
don't come around for a few days or don't see the post, just drop me an
email at dnayma  at  hotmail   dot  com.

Aim

*Diet Rockstar isn't a true "upper" in the Elvis sense. It is one of those
energy drinks. Its main ingredients are:  guarana, milk thistle, inositol
(a glucose isomer that according to a google search is proven as an
antidepressant),  eleutherococcus senticosus (siberian ginseng), B
Complex,  Ginkgo, Carnitine, Taurine, Splenda.



Aim

respond to me at: aimnews at comcastdotnet

Hi, ho, Kermit the groaner here...

I was diagnosed with AS about 12 (?) years ago. One thing a good
Rheumatologist will tell you is that no two people are the same,
or will respond to the same treatment the same way. What works
well for one person will have no effect on another, and will have
bad side effects on a third.

That being said, I am currently on Bextra and sulfadine for
inflammation and Ultram for pain. Unfortunately, I get acclimated
to whatever med I'm on after a while and my RD has to switch me
to another. I think it's about time to get switched again as the
meds are losing effectiveness and I've been having a lot of pain
for a few weeks now.

Some things which do help me are stretching for "range-of-motion"
(when I remember) and keeping WARM. Whenever I have a flare-up, I
bundle up when I go to bed, even to the point of being too warm
and sweating. I find that keeping warm in bed helps keep me from
locking up overnight. I may be a bit damp when I get up, but I
can usually get up without groaning too much.

Another thing to remember is that your emotional state WILL
effect your health. Most of us can tell you about having a flare
after being under a lot of stress. I advocate listening to music
(preferably with good friends) and spending a lot of time with a
cat or dog. Petting a "fur person" can help relax the body
(unless you have allergies.

Also, make sure that you have a rheumatologist who listens to you
and makes you "part of the team". A doctor who actually listens
to what you are saying has a much better chance of getting you
some help.

I hope that this helps, and I wish you good luck and better
health...

I was diagnosed in 1977 by an ortho surgeion who Rx'd
Indocine, told me to start using a cane (later crutches) and
never once advised about exercise.   I did some reading and
learned some exercises myself.  Began square dancing again
in 1983 after a 23-year break (my ex- didn't dance and I
stopped in 1960).

Didn't even hear the word "rheumatologist" until sent to one by
a GP in 1991, and she only continued me on Indocine another
8 years before I switched doctors.

I had to stop driving in 1996 because the neck was fused by AS
- I couldn't turn my head to watch out for other cars.

The new RD immediately arranged a THR (July 2000) which now
allows me to sleep through the night 6-9 hrs instead of 90 minute
periods.  He also discontinued Indocine and tried all the new
medicines, none of which really did any good.  I have been on
Remicade about 18 months and it appears to be holding things
in check better than anything else, but I take Tyelnol #3 for some
tenderness and some soreness.

Occassionally I sense some "tenderness" in the area around the
new hip, but it's not "soreness."  The RD is concentrating on the
right hip and knee and the ribs, which do seem to be deteriorating.

I exercise - square dance 2, 3, 4 nights a week - and occassionly
swim in our condo's pool.

The best therapy I've found is HUMOR.  Friendships are right up
there - probably tied with humor.  The 3 furry felines in the
household also act as therapy - either letting me laugh at their
antics, or jumping up onto my lap and purring their hearts out.

Now I need to answer your question with a question.
Have you followed through on the exercises given you before and
after your THR?  While I was in the transitional care unit of the
hospital, I drove the staff nuts, strolling up and down the halls with
a walker 110-12 hours a day.  They wanted me out of bed ONLY
when the PT or OT  was instructing me, and that was less than 30
minutes a day.  But I was determined to avoid the boob tube and
strenghten my hip and legs as much as possible before returning
home.

I was finally "kicked out" of rehab and was home12 days after
surgery, instead of the 6+ weeks my doc had forecast.