Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly Diagnosed

I've just been diagnosed with AS. For 20 years I've had back pain and a succession of doctors diagnosed it variously as strain, trauma, RA and "live with it." Finally, I've found a wonderful Rheumatologist who had the proper tests run and gave me a diagnosis of AS. It seems wonderful that all the symptoms I've been having finally fit together. In addition to back pain, I have plantar fascitis, heel pain, knee pain and pain in both hands. To further complicate matters, my dr. found I have two bulging discs (L5) in the lumbar region.

I've been started on prednisone and methotrexate to get the inflammation under control and then will go for physical therapy to learn exercises to strenghten my back muscles. This is supposed to prevent the crippling defromation of the spine.

I just started searching the web for information on this disease and found this site. I'd love to hear from others who have AS and are taking the meds I've been prescribed. Are they effective? Are there major side effects? Of course, the dr. said that the side effects only show in "rare" cases, but I'd like to know what really happens. Is anyone doing exercises and do they help?

Thanks for any info and help you can give me.

Lynn
A smile is contagious. Be a carrier!

Welcome, Lynn

I am glad that you found us. You will be impressed at the answers you will find here.

I am not taking medication for my AS. I have been lucky enough that the pain hasn't been TOO overwhelming. My doctor tried to put me on an anti-inflammatory but I heard too many stories about the side effects, such as liver damage, leaky gut, etc.

I know a lot of people here are on a lot of different medicines so I'm sure you will receive a lot of advice.

Good luck to you on your journey. If you have any questions, don't be afraid to post it. I trust the people here more than most doctors.

Take care,

Angie

Lynn,
I just wanted to say Hello and Welcome to the Kick AS family.
This website is a great place to meet a lot of great people who
are also fighting AS. One can learn tons of stuff about this disease
just by reading the posts on this site.
Take Care !
Kevin

Hi,

Welcome. I'm relatively new here. But I'm sure you will get lots of answers and support here. I don't take the meds you mentioned, so I can't help you out there.

But the exercices can really help. I have been diagnosed two years after my first symptoms, but I already used to sit, walk, stand, ... like the typical AS patient. A few months after I started the exercises, people already noticed I kept my beck much straighter. ("You look so much taller, what's going on?"). And while you do the exercises, you move your back, which is also very important.

I can totally understand the fact that the diagnosis was, in a weard way, a relief. It's not all in your head. And although there is no cure, there are ways to treat the symptoms. Things will probably just get better now.

Lots of people here take the meds you are on, so they will be able to give you good answers to your questions.

Take care.
Bye for now

Hi Russlyn,
I read your posts and thought I would contact you. I am new to this KickAS but not new to AS I have had it now for more than 20 years. Just want to pass on some info. I have reached the final stage where my spine is completely fused. I suffer no pain I take one 75mg Ketoprofen twice a day. And I work out at least three times a week. I would suggest that you start areobics, weights and treadmill and take calcium.
I am 69 years old don't look like it and can still do Taebo my only problem is that I can't move my head from side to side.
I do get an occasional bout with iritis but a few drops of Pred forte every 4 hours and it clears up.
If you want to dontact me I will be glad to offer any other information that I can.

I do believe diet and exercise play a big roll in keeping this disease under control.

Take care,
Doreen

e-mail: doreentxx@yahoo.com

Hi, and welcome. I wish you good luck on your meds. I couldn't decide whether or not to answer your question ("Of course, the dr. said that the side effects only show in "rare" cases, but I'd like to know what really happens."). I guess I'll make it brief and say don't be scared -- but be cautious and aware. I think I'm the only person I've ever heard of with such side effects.

Bone marrow supppression is one side effect. I took the drugs (first sulfasalazine, and then methotrexate) for just 4 weeks each, and got very sick. Blood levels dropped out of sight, etc. I had a bone marrow biopsy and I am in bone marrow failure. We don't know (and there's no way of knowing) if the drugs caused it, or if I had it and it worsened with the drugs, finally making it noticeable (like the final straw that broke the camel's back).

At any rate, my doctor didn't follow up on me as appropriate (I've since read that labs need to be done every 2 weeks on ssz -- don't know about mtx). If he had, it might have been detected sooner and I might not be so sick. My advice to you is simply go to all lab appointments, and see your doctor immediately if you don't feel well. And if I had known what to watch for, I would have realized sooner that there was a problem.

Again, don't take this as a scare -- stay on the meds and get better! Just answering your question honestly.

Glad you found us, and again, welcome.

Patty



Before I'd even heard of AS -- climbing in the Rockies. (Eww! I look fat in Tom's clothes!)

Hi Lynn,

Welcome aboard KickAS, best site on the web. I think you will find people here collectively probably know more about AS than any rheumy you have. This is a great site for support, learning and laughter.

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb

Lynn,

I've been on Prednisone since 1986 along with Various NSAIDS etc. etc. etc.

I have not been on MTX though so I can't offer anything there. However the Prednisone was a life saver as it gave me back my life. BE SURE you take at least 1000mg calcium w/vitamin D3 a day (Os-Cal). I did end up with compression fractures from the Pred. And insist on a bone density test yearly while on Prednisone. Excercise is an absolute must everyday (helps stress and build bone). I ride a stationary bike and back excercises daily. Your PT will help you there.

Good luck,

Kerry

Thanks to all of you for your warm welcome and words of advice. I have been reading several posts today and you're right - there's more about AS here than any dr. could possibly know. This is wonderful!

I'm not much of an exerciser, so it helps to know that exercises really help with AS. That will give me the motivation I need to keep going when I'd rather quit.

Thanks again!

Lynn
A smile is contagious. Be a carrier!

Hi Lynne,Welcome to KICKAS



I was on Methotrexate and Prednisone till last week.I seen my rhuemie last week,I had no side effects from the methotrexate,it just didn`t help me at all.So now I`m on Arava,and praying that it works!!!!!!
I also stopped the Prednisone{that has to be done slowly}besides putting on stacks of weight,I had no other side effects with that either.
Every person is different,some people have great results with Methotrexate,some dont.Whatever it takes,I hope you feel better soon
Take care
Shirley