Hi All:
I was recently diagnosed with Ankylosing Spondylitis and I am having
sort of a tough time dealing with this new diagnosis. I'm 32 and over
the last 15 years I've also been diagnosed with Crohn's disease,
psoriasis, asthma, and luckily the epilepsy and brain tumor are now
just memories in my past.
Still this new challenge is posing a temporary stumbling block. Until I
feel like I regain some control I am a bit out of sorts, so I thought
I'd post here to get a better idea of what I should expect with the AS.
I've had very bad shoulder pain and some low back discomfort for
almost 3 years, still because of my other autoimmune related diseases,
my rheumatologist immediately wanted to start me on methotrexate and
Enbrel.
>From my research, this treatment sounds rather agressive, is that
'normal' to start with?
I've read a few posts on here that say Enbrel may not work permanently
or that my body may stop reacting positively to it? What then? I've
heard Enbrel can halt the disease progression but may cause
lymphoma...yikes! And I haven't even had children yet, unsure if I can
now?
Well, my apologies for the long rant, I'm still a bit upset. But if
anyone has a moment to drop a line with your experiences, I'd really
appreciate it.
Thanks,
Jen
Gwen Love - 30 Jan 2005 02:32 GMT
Jen, I have OA so I can't help you any. But wanted you to know your post
has been seen. I'm sure you'll hear from others.
Gwen
> Hi All:
>
[quoted text clipped - 24 lines]
> Thanks,
> Jen
jenwilliams72@gmail.com - 30 Jan 2005 22:06 GMT
Hi Gwen,
Thanks so much for the warm welcome!
Jen
firechief - 30 Jan 2005 05:19 GMT
Jen wrote:
> I was recently diagnosed with Ankylosing Spondylitis and I am having
> sort of a tough time dealing with this new diagnosis.
> Still this new challenge is posing a temporary stumbling block. Until
> I feel like I regain some control I am a bit out of sorts, so I thought
> I'd post here to get a better idea of what I should expect with the AS.
I was diagnosed with AS in 1977 and put on Indocine until 2000.
28 years ago there were not all the NSAIDS and DMARDS we
have today.
My new (at the time) RD in 2000 tried Vioxx, Bextra, Flexeril, and
half a dozen other drugs -- all to no avail. I've been on Remicade,
Soma, and Tylenol #3 for about 2 years now.
I had a THR in July 2000 after the bitch I had for combo PCP-RD
from '91-'99 said to put it off until --- "wellllllllll, it may be too
late."
Found a new PCP in February 2000 -- she's a D.O. and great --
who sent me to a new RD, who sent me to the surgeon -- all that
within 4 months -- and 2 months later I had the hip replacement.
I have to say that everyone deals with AS (and every other form
of arthritis) in many different ways. Visit the Arthritis Foundation
website www.arthritis.org and search for AS. Each visit, you can
request 2 or 3 F-R-E-E publications which they'll mail to you.
Also visit http://www.spondylitis.org/ for some great info. This is
the AS organization.
And read alt.support.arthritis.risg-spondy.info for more info and
links to even more. That group is very slow, so you won't get
buried in tons and tons of posts.
jenwilliams72@gmail.com - 30 Jan 2005 21:23 GMT
Hi, sorry to hear about the difficulties you had with your docs. Thanks
for the info, I did go and request some literature and I've already
read all that I can get my hands on or click on, and I found a support
group that meets near me.
Thanks for all of the tips!
Caroline Marold - 30 Jan 2005 22:39 GMT
Don't be afraid of the DMARD [Enbrel and MTX]. Be
afraid of the disease without them. My father lived
with AS for 60+ years. His spine was fully involved
because the 14 aspirin a day help relieve a bit of the
pain but did not slow the progression of the disease.
As to medication losing effectiveness -- this does
happen with some people. That is why there are more
than one drug to rely on and more in the pipeline all
the time. You are lucky. Enbrel and Remicade have been
around long enough now that the FDA trials for AS have
been passed. Even two years ago, I think Enbrel trials
were still in the works. Of course my memory is shoddy
these days so it might have been longer ago.
That makes your diagnosis of AS now, a good one. :)
Yeah, I know, doesn't feel like that. As to the number
of things wrong, get in line girl friend. We do have a
3 disease limit around here and the return line is over
there --------------> Better be quick because like the
traveling crap game in Guys and Dolls, it is in a
different place every time you go looking for it.
Welcome to the group and hide your chocolate. This
crowd is not to be trusted with chocolate and they steal.
Duckie
> Hi All:
>
[quoted text clipped - 24 lines]
> Thanks,
> Jen

Signature
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
RoseB - 01 Feb 2005 03:18 GMT
I am reposting this in case Aim is still around later tonight and sees
it.
Jen: Aim is about your age and also has AS. She may be able to answer
some of your quiestions.
>I was recently diagnosed with Ankylosing Spondylitis and I am having
>sort of a tough time dealing with this new diagnosis. I'm 32 and over
[quoted text clipped - 22 lines]
>Thanks,
>Jen
Rose @}>->--
Being educated means that rather than fearing the unknown, one seeks to understand it. RB
Please remove "Ima" to reply.
firechief - 02 Feb 2005 21:46 GMT
Jen wrote:
> I thought I'd post here to get a better idea of what I should
> expect with the AS.
I finally found the file I had on ankylosing spondylis, stored
on the second computer.
Ankylosing spondylitis (AS) is a rheumatic disease that causes arthritis
of the spine and sacroiliac joints, and can cause inflammation of the
eyes, lungs, and heart valves. It varies from intermittent episodes of
back pain that occur throughout life to a severe chronic disease that
attacks the spine, peripheral joints and other body organs, resulting in
severe joint and back stiffness, loss of motion and deformity as life
progresses.
AS is a member of the family of diseases that attack the spine called
spondylathropathies.
The cause of AS is not known, but all of the spondylarthropathies share a
common genetic marker, called HLA-B27, in most affected individuals.
o AS afflicts an estimated 129 out of 100,000 people in the U.S.
o AS typically strikes adolescents and young adult males.
o The prevalence of AS varies by ethnic group and is most common
in Native Americans.
Delayed diagnosis is common because symptoms are often attributed to more
common back problesm. A dramatic loss of flexibility in the lumbar spine
is an early sign of AS. Although most symptoms begin in the lumbar and
sacroiliac areas, they may involve the neck and upper back as well.
Arthritis may also occur in the shoulder, hips and feet. Some patients
have eye inflammation, and more severe cases must be observed for heart
valve involvement.
At times, AS may presage the development of inflammatory bowel disease
and some patients have fever, fatigue, weight loss, anemia, iritis (eye
inflammation) and more severe cases may involve heart valve dysfunciton.
Other disorders of the internal organs and bones mimic spondyl-
arthropathies and must be distinguished. Laboratory evaluation may
reveal an elevated sedimentation rate (an indicator of inflammation),
anemia and a positive HLA-b27 assay. X-rays and bone scans may show
characteristic changes.
The severit y of joint involvement and the degree of systemic symptoms
vary greatly from one individual to another. Early, accurate diagnosis
and therapy may minimize years of pain and disability.
Medical treatment consists of nonsteroidal anti-inflammaroty drugs
(NSAID). Indomethacin is most effective, while sulfasalazine may
benefit those with more severe involvement. Peripheral joint arthritis
may respond to methotrexate.
Rehabilitation therapies are essential. Proper sleep and walking
positions, coupled with abdominal and back exercises, help maintain
posture. Escercises help maintain joint flexibility. Breathing
exercises enhance lung capacit y, and swimming provides aerobic
exercise. Even with optimal treatment, some people will deveilp a stiff
or "ankylosed" spine, but they will remain functional if this fusion
occurs in an upright position. Continuing care is critical. AS is a
lifelong problem, and people often fail to continue treatment in which
case permanent posture and mobilit y losses occur.
Rheumatologists are uniquely educated to diagnose and treat AS and
can also serve as educators to other physicians and patients about this
disease. Rheumatologists in basic and clinical research are the leaders
in improving our understanding and treatment of this disease.