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

Welcome to KA, Katy.
Definitely listen to your doctor, but do some reading of information (rely on stuff from reliable sources, not simply anecdotal quips that turn up around the WWW) so you can get a grasp on what you are dealing with.

As for Celebrex, I couldn't tolerate it. There were a few NSAIDs that my rheumy started with...but either they didn't work or I couldn't tolerate them without a secondary medicine. I wasn't willing to take a medicine for the sole purpose of protecting me from effects of another. Finally, Mobic/meloxicam 15mg was the one. No side-effects and it works. I need the NSAID, the MTX and the biologic (Cimzia)-all three-to keep the disease under fairly good control. Take out one of those and I go downhill in a short time. My rheumy (and I) believe that the inflammation needs to be controlled first. I guess I've missed someone saying that NSAIDs can make things worse. Hmmm.

In any case, welcome to KA.

Hi Katy,

I hope the myriad conflicts within this thread haven't chased you away. It's hard to remember after years of dealing with this disease what it's like to be young, newly diagnosed and frightened/confused by all the information you're being handed.

So, here's the thing; whether or not you subscribe to the much debated 'leaky gut causes AS' theory, you have to learn about this disease and the treatments available to us. Learn as much as you can about all of them, look at your life and what you want to do, and make the decision that you think is right for you. All anyone here can do is share experience because not one of us is a medical expert in the field of rheumatology beyond what AS has done to us and how we're treating it.

I was 15 when I first felt the effect of what I now know is AS. I am now almost 51 and still walking, but I am relatively certain I did not have damage to the SIs atyour age because I would have been diagnosed at least ten years earlier than I was. So, my disease appears to have progressed more slowly than yours. That means that your case is already different to mine.

My point is that AS is different in all of us, so we can only do the best we can to make the right decisions. I'm curious to know why your rheumy hasn't suggested you think about using one of the biologic medications since he's so concerned about you not walking by the time you're 50.

Read, learn and keep asking questions. You'll soon find your way.

Warm hugs,

Count me as one who has a lot of experience (40 years) taking NSAID's and they have made my AS easier to live with. Whether you call it a "treatment" or "pain management" to me is irrelevant, what is important is that it helps. I do not have a "mild case" as my spinal column is 100% fused top to bottom yet at 58 I still am working, playing golf and all things considered doing OK. The important thing is finding one that works for you and your stomach can handle. I had to try several and have been taking flurbuprophen for quite a while. It's not the strongest, newest or even the most effective but I can tolerate it long term which is important. It will take some trial and error to find the right one for you but my experience is they definitely help.
Best of luck.

NSAIDs are the only drug type so far to have been shown to reduce the disease progression over a number of years (though it is likely anti TNFs will also be shown to do this). However, many people suffer from side effects, so advised to be taken with stomach protection (PPIs - omeprazole, lansoprazole)to reduce the damage but many people chose to take them only during flares to avoid long term complications like stomach ulcers, reflux and gastritis. If you can tolerate them and you find they help, NSAIDs may be right for you.

My advice is to discuss anti TNF therapy with your doctor, many of us have great results and early studies are looking very promising.

Aside from medications, exercising and staying active are both advised. Physiotherapy for the lower back is particularly useful.

Some people say the NSD diet helps - no evidence yet, but well worth a try. A healthy diet full of fruit and vegetables is always a good choice either way.

Hope this helps

Andy