ankylosing spondylitis information?
May 4, 2011 2:45 PM Subscribe
YANHD, but a male friend of a friend has just been diagnosed with ankylosing spondylitis. She's done some research, but hasn't been able to find an answer to whether or not the disease will progress and get worse no matter what. Any stories, suggestions, links?
I have AS. The answer to your primary question is that it varies by person. Some people have severe disease activity and spinal fusion, and some don't. Some people are disabled by pain and fatigue, and some aren't. And, interestingly, some people with fusion never experience that much pain and some people without fusion have a whole lot.
Excercise (within their own abilities and limitations) helps almost everybody. Some people respond well to treatment ranging from NSAIDs to disease modifying drugs (sulfasalazine or methotrexate) to biologics (Enbrel, Humira, etc). None of these have been conclusively shown to halt the progression of fusion, but all can help manage pain and fatigue by controlling inflammation. Some people need narcotics to manage pain. Some people seek "alternative" treatments. In any case, all treatment should be handled in consultation with a rheumatologist.
For much, much, more information, I suggest you show your friend the websites of Spondylitis Association of America and/or National Ankylosing Spondylitis Association (UK).
There seem to be dozens of spondies on MeFi so I'm sure more people will weigh in.
posted by hydropsyche at 2:54 PM on May 4, 2011 [3 favorites]
Excercise (within their own abilities and limitations) helps almost everybody. Some people respond well to treatment ranging from NSAIDs to disease modifying drugs (sulfasalazine or methotrexate) to biologics (Enbrel, Humira, etc). None of these have been conclusively shown to halt the progression of fusion, but all can help manage pain and fatigue by controlling inflammation. Some people need narcotics to manage pain. Some people seek "alternative" treatments. In any case, all treatment should be handled in consultation with a rheumatologist.
For much, much, more information, I suggest you show your friend the websites of Spondylitis Association of America and/or National Ankylosing Spondylitis Association (UK).
There seem to be dozens of spondies on MeFi so I'm sure more people will weigh in.
posted by hydropsyche at 2:54 PM on May 4, 2011 [3 favorites]
Best answer: I have had it for 25+ years in some form. Part of the reason your FOAF can't find an answer to that is that there is no definitive answer, or rather no single prognosis. Some people end up with a degenerative and progressive form, others remit and relapse, others have cases that are bad for an extended period and then seem to burn out in middle age, and still others have cases that might have been progressive but end up being managed well by medication and other measures. (I fall into the last group here.)
No one has really developed a complete account of the etiology of the disease or entirely explained why there is such variation among patients. Surely some of that is environmental and behavioral - bad diet, exercise and other habits never help, and good ones never hurt - but those factors don't seem to explain why some have more difficulty than others. But AS is also a disease for which there is a great deal of clinical knowledge and for which you can get good support. Any reasonably competent rheumatologist will know of the disease and have experience treating patients who suffer from it.
Things that have worked for me:
1. If a medicine works, stick with it. Attempts to switch me onto newer supposedly better things failed, and some people who do this find the meds don't work as well when they return to them.
2. Moderate exercise is essential, heavy exercise is risky. Your FOAF may be someone who has been athletic all his/her life and is concerned this means the end of it. Depending on what he/she does, that might be the case. There are no professional football players with AS. But regular moderate exercise is important in the long term.
3. Stop exercising when symptoms get worse. That pain in his/her SI joint is going to be markedly worse the first time he/she pushes it like an 18-year old with nothing to lose. Instead of extra aches and pains for a day or two, your FOAF may find herself laid up for weeks in pain for which they won't give her painkillers. (I speak from experience here.)
There's lots more, but I have to run. MeMail me.
posted by el_lupino at 3:09 PM on May 4, 2011 [2 favorites]
No one has really developed a complete account of the etiology of the disease or entirely explained why there is such variation among patients. Surely some of that is environmental and behavioral - bad diet, exercise and other habits never help, and good ones never hurt - but those factors don't seem to explain why some have more difficulty than others. But AS is also a disease for which there is a great deal of clinical knowledge and for which you can get good support. Any reasonably competent rheumatologist will know of the disease and have experience treating patients who suffer from it.
Things that have worked for me:
1. If a medicine works, stick with it. Attempts to switch me onto newer supposedly better things failed, and some people who do this find the meds don't work as well when they return to them.
2. Moderate exercise is essential, heavy exercise is risky. Your FOAF may be someone who has been athletic all his/her life and is concerned this means the end of it. Depending on what he/she does, that might be the case. There are no professional football players with AS. But regular moderate exercise is important in the long term.
3. Stop exercising when symptoms get worse. That pain in his/her SI joint is going to be markedly worse the first time he/she pushes it like an 18-year old with nothing to lose. Instead of extra aches and pains for a day or two, your FOAF may find herself laid up for weeks in pain for which they won't give her painkillers. (I speak from experience here.)
There's lots more, but I have to run. MeMail me.
posted by el_lupino at 3:09 PM on May 4, 2011 [2 favorites]
Best answer: I have AS. I have self managed it for most of my life. For a good portion of my 20s I was eating Ibuprofen 4 at a time, 3 or 4 times a day. For some reason in the past few years it has receded.
I say for some reason because I made dietary changes 2 years ago. I was sick of being in pain. I cut everything out of my diet except for brown rice and steamed vegetables. I ate that for a few days, then slowly added things back in. Magically, the pain disappeared. Completely.
For about a year I was convinced that wheat and/or gluten were the cause of my pain. But eventually I started eating wheat bread again with no ill effects. Now, I pretty much eat what I want, as long as it's natural. There are a few things I avoid specifically: hydrogenated fats, high fructose corn syrup, and artificial sweeteners. Other than that I just try to eat unprocessed foods in general.
Strangely enough, the only thing that I can pinpoint that causes a flareup is when I eat at a particular Mexican restaurant. I'm guessing it's a food additive of some sort since I can eat exactly the same thing at home with no problems if I've prepared it myself.
The other possibility is that it has simply burned out, which sometimes happens around my age. Or maybe it's a combination of factors.
But I would highly highly highly recommend a change in diet to your friend. Other things that helped me were low impact sports (i.e. not football or snowboarding or things that literally involve impact on the joints). I've always been pretty active. Weightlifting, wrestling and other martial arts, yoga, etc. are things that helped me.
Also, stay hydrated. Don't overdo the NSAIDS (ibuprofen) because it can damage your stomach. And again: diet. Diet. Diet. Cut out the sugary drinks and crap food at the least.
Finally - be prepared for the other side effects. Iritis is a related issue which caused me a bit of trouble and has scarred my eyes permanently - but since I learned to look for the early warning signs and take preventive measures immediately (flushing the eye with cold water) I haven't had a problem with that.
posted by natteringnabob at 3:17 PM on May 4, 2011
I say for some reason because I made dietary changes 2 years ago. I was sick of being in pain. I cut everything out of my diet except for brown rice and steamed vegetables. I ate that for a few days, then slowly added things back in. Magically, the pain disappeared. Completely.
For about a year I was convinced that wheat and/or gluten were the cause of my pain. But eventually I started eating wheat bread again with no ill effects. Now, I pretty much eat what I want, as long as it's natural. There are a few things I avoid specifically: hydrogenated fats, high fructose corn syrup, and artificial sweeteners. Other than that I just try to eat unprocessed foods in general.
Strangely enough, the only thing that I can pinpoint that causes a flareup is when I eat at a particular Mexican restaurant. I'm guessing it's a food additive of some sort since I can eat exactly the same thing at home with no problems if I've prepared it myself.
The other possibility is that it has simply burned out, which sometimes happens around my age. Or maybe it's a combination of factors.
But I would highly highly highly recommend a change in diet to your friend. Other things that helped me were low impact sports (i.e. not football or snowboarding or things that literally involve impact on the joints). I've always been pretty active. Weightlifting, wrestling and other martial arts, yoga, etc. are things that helped me.
Also, stay hydrated. Don't overdo the NSAIDS (ibuprofen) because it can damage your stomach. And again: diet. Diet. Diet. Cut out the sugary drinks and crap food at the least.
Finally - be prepared for the other side effects. Iritis is a related issue which caused me a bit of trouble and has scarred my eyes permanently - but since I learned to look for the early warning signs and take preventive measures immediately (flushing the eye with cold water) I haven't had a problem with that.
posted by natteringnabob at 3:17 PM on May 4, 2011
I've had it for about 8 years now, and it hasn't gotten worse, at least not yet. For me it always presents as pain in the sacroiliac (rear hip) joint on one side. It switches sides from time to time, which is always a real "joy". I got iritis three times pre-diagnosis, but haven't had it since (again, always in just one eye at a time). So far I have no other joint involvement and my x-rays and range of motion are fine -- knock on wood!
Diet and exercise have gone a long way toward improving my quality of life. I'm in a lot less pain now than I was when I was first diagnosed; the first few years I was on prescription NSAIDS, and could still barely sleep for the pain. I tried a lot of different things, but got the most relief out of a low-starch diet, as I've described on mefi here and here. There's a lot of discussion about this diet over at KickAs.org -- I don't post there, but that's where I originally found out about the diet, for which I'll be eternally grateful. It doesn't work for everyone, but it does make a big difference for others, so I'd suggest that your friend go very low-starch for a month or so and see if it helps.
Weightlifting helps as well, if you can do it. This has been especially fantastic for me. I skip it when I'm in a pain flare, but when I'm not I lift three times a week. Cardio is OK, too, but I find that too much high-impact work can trigger a flare. So can sitting poorly for long periods at a time: the laptop can really wreck me, if I'm not careful to sit properly at a desk. Likewise, stress is a killer; if I'm in high-stress mode for more than about a week or two, a flare-up is likely to follow. I've found that medical marijuana helps with that, and with the pain once a flare-up occurs, so if your friend is in a medical MJ state (or not!), that might be something to investigate.
Please feel free to me-mail or ask here if you have any questions.
posted by vorfeed at 3:34 PM on May 4, 2011
Diet and exercise have gone a long way toward improving my quality of life. I'm in a lot less pain now than I was when I was first diagnosed; the first few years I was on prescription NSAIDS, and could still barely sleep for the pain. I tried a lot of different things, but got the most relief out of a low-starch diet, as I've described on mefi here and here. There's a lot of discussion about this diet over at KickAs.org -- I don't post there, but that's where I originally found out about the diet, for which I'll be eternally grateful. It doesn't work for everyone, but it does make a big difference for others, so I'd suggest that your friend go very low-starch for a month or so and see if it helps.
Weightlifting helps as well, if you can do it. This has been especially fantastic for me. I skip it when I'm in a pain flare, but when I'm not I lift three times a week. Cardio is OK, too, but I find that too much high-impact work can trigger a flare. So can sitting poorly for long periods at a time: the laptop can really wreck me, if I'm not careful to sit properly at a desk. Likewise, stress is a killer; if I'm in high-stress mode for more than about a week or two, a flare-up is likely to follow. I've found that medical marijuana helps with that, and with the pain once a flare-up occurs, so if your friend is in a medical MJ state (or not!), that might be something to investigate.
Please feel free to me-mail or ask here if you have any questions.
posted by vorfeed at 3:34 PM on May 4, 2011
I have had Spondylitis for the past 20 years (juvenille, then full Ankylosing Spondylitis diagnosed in 20's). I agree with everything posted above. There really isn't any way to know for sure how bad the disease will get. I have very little fusion (only one SI joint) but terrible pain and muscle spasms. A friend of mine is almost completely fused at 45 but has almost no pain anymore. My Rheumatologist has mentioned that among his patients, he sees more fusion and less pain in men and the opposite in women.
The Spondylitis Association website linked by hydropsyche above was a lifesaver for me after my diagnoses. The KickAS forums were great for diet information, but the diet didn't work that well for me. I don't know if I didn't give it enough time (3 months) or if it just doesn't work for everyone. I stopped it due to pregnancy, and haven't been desperate enough since then to try again. It's pretty draconian.
One thing I haven't seen mentioned above is the importance of posture. It is recommended to do posture excersies and if possible spend time each day lying prone to avoid fusing in a bent position. It is not really possible to stop fusion, but you can try and make sure you fuse in the best possible position. Related to that, sleeping in a recliner is a bad idea even though sometimes it ends up being the most comfortable way to sleep with AS.
I'm sorry you friend has to deal with this. The good news is that there have been a lot of breakthroughs in the past few years with AS research. There are some new drugs in the works to target AS specifically instead of the hand-me-down RA medication we have been getting up to now.
posted by Lapin at 4:49 PM on May 4, 2011
The Spondylitis Association website linked by hydropsyche above was a lifesaver for me after my diagnoses. The KickAS forums were great for diet information, but the diet didn't work that well for me. I don't know if I didn't give it enough time (3 months) or if it just doesn't work for everyone. I stopped it due to pregnancy, and haven't been desperate enough since then to try again. It's pretty draconian.
One thing I haven't seen mentioned above is the importance of posture. It is recommended to do posture excersies and if possible spend time each day lying prone to avoid fusing in a bent position. It is not really possible to stop fusion, but you can try and make sure you fuse in the best possible position. Related to that, sleeping in a recliner is a bad idea even though sometimes it ends up being the most comfortable way to sleep with AS.
I'm sorry you friend has to deal with this. The good news is that there have been a lot of breakthroughs in the past few years with AS research. There are some new drugs in the works to target AS specifically instead of the hand-me-down RA medication we have been getting up to now.
posted by Lapin at 4:49 PM on May 4, 2011
I don't know if I didn't give it enough time (3 months) or if it just doesn't work for everyone.
It doesn't work for everyone, unfortunately. I'd say 3 months is more than enough time to try it, assuming you gave it an honest try -- for me, it was obvious within two weeks.
posted by vorfeed at 5:01 PM on May 4, 2011
It doesn't work for everyone, unfortunately. I'd say 3 months is more than enough time to try it, assuming you gave it an honest try -- for me, it was obvious within two weeks.
posted by vorfeed at 5:01 PM on May 4, 2011
I have had AS for the past 15 years, since I was 18. I did not have high-quality care in my rural area and at 21 I lost my parents insurance and was uninsured for the next 10 years. Then I started grad school and had good insurance only to be turned down for Embrel. I appealed and fought the insurance company as best I could while my situation got worse and worse. Finally, after over a year I was approved for Remicade treatment (which is considered a procedure not a prescription).
Within weeks my whole life changed. In those 2 years waiting I had become almost completely disabled, every step was painful. I dreaded going to parties or even restaurants with my friends because I was in so much pain. I tired my best to hide the pain--and thought I was hiding it--but random strangers would come up to me on campus and ask me what was wrong and if I was ok. But now I can go to concerts, I have hiked all over the finger lakes. I have regained most of the movement in my spine, though limited movement still remains in my neck. No matter what little things remain I feel like I actually have my life back.
So my only advice is to try to get the best medical care you can. If the current doctor is not helpful or not willing to help you with your ins. company, try to find someone who is. And stay on top of the insurance companies even if they try to deny you, so often they just try to run out the clock or discourage you from pursuing it until you just give up. Embrel, Remicade, and the like don't work for everyone, but IF they work, they are truly life-changing.
Other than medication, many things help that people have mentioned: cutting out carbs, exercise (warm-water swimming is great), stretching (you really have to push yourself with this). Anyway, the single thing I would tell myself if I could go back in time is just to fight it and not give up. I entered a deep and long-term depression. I gained weight. I stopped exercise. I went into a downward spiral that I almost didn't come out of it. But 15 years later with more experience I see that I could have made my life much, much easier by not giving up.
posted by mp212 at 10:14 PM on May 4, 2011 [1 favorite]
Within weeks my whole life changed. In those 2 years waiting I had become almost completely disabled, every step was painful. I dreaded going to parties or even restaurants with my friends because I was in so much pain. I tired my best to hide the pain--and thought I was hiding it--but random strangers would come up to me on campus and ask me what was wrong and if I was ok. But now I can go to concerts, I have hiked all over the finger lakes. I have regained most of the movement in my spine, though limited movement still remains in my neck. No matter what little things remain I feel like I actually have my life back.
So my only advice is to try to get the best medical care you can. If the current doctor is not helpful or not willing to help you with your ins. company, try to find someone who is. And stay on top of the insurance companies even if they try to deny you, so often they just try to run out the clock or discourage you from pursuing it until you just give up. Embrel, Remicade, and the like don't work for everyone, but IF they work, they are truly life-changing.
Other than medication, many things help that people have mentioned: cutting out carbs, exercise (warm-water swimming is great), stretching (you really have to push yourself with this). Anyway, the single thing I would tell myself if I could go back in time is just to fight it and not give up. I entered a deep and long-term depression. I gained weight. I stopped exercise. I went into a downward spiral that I almost didn't come out of it. But 15 years later with more experience I see that I could have made my life much, much easier by not giving up.
posted by mp212 at 10:14 PM on May 4, 2011 [1 favorite]
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As of now, he still has pain, but he manages it by working out and he swears by cutting carbs out his diet.
So far at late 30'sm he's doing pretty well. He has pain, but is of the old school of just dealing with it. He doesn't take any medications as of yet, and he doesn't have 'bamboo' spine so far.
The other relative has had more issues concerning his spine, but he has not had to have any invasive procedures.
I am under the impression that it has a different course of action with each person. Being healthy and getting regulaer check ups is probably the best thing one can do (as is most medical diseases).
posted by handbanana at 2:53 PM on May 4, 2011