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Hi, my wife was diagnosed with ankylosing spondylitis. What is this condition like? What are predictions for recovering from the disease?

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Ankylosing spondylitis is one of many forms of inflammatory disease of joints called arthritis. Rheumatoid arthritis is most commonly seen. The disease affects the joints between the vertebrae of your spine and the joints between your spine and pelvis. However, ankylosing spondylitis may also affect inflammation in places where your tendons and ligaments attach to bones, joints between your ribs and spine, or hips, shoulders, knees and feet joints. As the condition progresses bones grow together to form a new bone. When vertebrae grow together, they become stiff and inflexible. Fusion can also stiffen your rib cage, reducing lung capacity and function.
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Wretched condition. No, there is not cure, the condition can only be managed. In the 1980s Prof. endbril (UK now retired) discovered that diet could play an important role in managing AS. Low starch and also no starch / LSD & NSD. Please vist the KickAS.org forum. an excellent forum, over 4000 members, full information re diet, medications, alternatives. Excellent interaction and support between forum members, for foum members and for their families. Also NAAS, the UK Society: National Ankylosing Arthritis Society - follow the links to other societies world wide. good information.

Apart from pain meds and the recent breakthroughs DMARDS (only just now available in the UK but has been available in the US for summat like the past 15 years!) and the NSAIDS, AS is helped by stretches to ensure that mobility is maintained. Pilates, yoga are particularly helpful. Walking, swimming, is also helpful. Many AS sufferers are very active other are pretty crippled by the disease - which is progressive.

Best to inform oneself as far as possible about the disease and checking out all the links. To be informed is to be empowered.

Full information including exercises are available from KickAS and informative patient information with booklets etc available from NASS et al.

Hope this was helpful

AutumnGold
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Great Info from AutumnGold...AS is genetic and tends to affect more males than females. It runs in my family. My paternal grandmother (Dad's Mom) had it but never developed severe symptoms. My Dad has full-blown AS and is on the extremely debilitated side of the spectrum. My Uncle has it, but is more affected by rheumetoid arthritis than AS. My Aunt has problems from it and I have been having symptoms since I was 18 years old...but never diagnosed. The best thing to do is read as much info as you can from various websites, organizations, forums, whatever. Educate yourself. You'll find that you will be more knowledgeable than most doctors you see...sadly. Stay active. Any type of physical activity will help keep loose and limber. Being lethargic is the worse thing you can do. Also, be mindful of your posture at all times (keep back straight!). My father has had been disabled from this disease for about 30 years now and is in terrible shape from it. But is one of the strongest people I have ever known because he deals with it and maintains his mental alertness. His condition is unique because he was seeing a VA doctor that didn't care because he was retiring...he told my dad he had arthritis and he'd be fine...and that was it. So he never practiced good posture or was mindful of his exercise, weight, etc.

Good luck! We have come a long way in the past 15 years with new meds that have been shown to slow, and even stop the progression of AS.

Mike from GA
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I am also suffering from AS. As you have written there is a meds that have been shown to slow, and even stop the progression of AS. Please tell me the name of that meds.
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PuneetKhanna9 wrote:

Guest wrote:

Great Info from AutumnGold...AS is genetic and tends to affect more males than females. It runs in my family. My paternal grandmother (Dad's Mom) had it but never developed severe symptoms. My Dad has full-blown AS and is on the extremely debilitated side of the spectrum. My Uncle has it, but is more affected by rheumetoid arthritis than AS. My Aunt has problems from it and I have been having symptoms since I was 18 years old...but never diagnosed. The best thing to do is read as much info as you can from various websites, organizations, forums, whatever. Educate yourself. You'll find that you will be more knowledgeable than most doctors you see...sadly. Stay active. Any type of physical activity will help keep loose and limber. Being lethargic is the worse thing you can do. Also, be mindful of your posture at all times (keep back straight!). My father has had been disabled from this disease for about 30 years now and is in terrible shape from it. But is one of the strongest people I have ever known because he deals with it and maintains his mental alertness. His condition is unique because he was seeing a VA doctor that didn't care because he was retiring...he told my dad he had arthritis and he'd be fine...and that was it. So he never practiced good posture or was mindful of his exercise, weight, etc.

Good luck! We have come a long way in the past 15 years with new meds that have been shown to slow, and even stop the progression of AS.

Mike from GA


I am also suffering from AS. As you have written there is a meds that have been shown to slow, and even stop the progression of AS. Please tell me the name of that meds.


Hi Puneet - Sorry to learn that you also sufrfer from AS. Nasty disease.

Yes. There are drugs that can treat AS, but, NOT cure. There is no cure. One can only 'manage' as.

To start with, dietary factors are a definite plus for keeping the inflammation in check. Google up inflammatory foods and then anti-inflammatory foods. Red meats are inflammatory - that is beef, mutton, goat, pork, bison and other such meats of similar kind. White meat: Chicken, turkey, game birds (pheasant etc), rabbit are acceptable. Fish is good, excepting that can be contaminated with mercury. So be very careful with fish, only eat fresh and ensure NOT farmed! (Farmed fish are fed with pelleted foods, often GM based).

There are several inflammatory vegetables - cruciferous veggies (cabbage family) and others like tomatoes. In addition, keep to low starch foods or NO starch. A no starch diet could well hold the inflammation in check, then when gut healed (gut and inflammation are a known for AS). Then can move to low starch diet, gradually introducing starch foods, s-l-o-w-l-y... Seeing how you go as you add the foods. For more information re starch see Prof Ebringer and his London Diet - full information on this on kickas.org)

As far as drugs go. Will tell you about low dose Naltrexone. Amazing. LDN is used for many inflammatory, autoimmune, diseases. Notably started with Multiple Sclerosis. Now it is proven in many inflammatory diseases including AS (I use LDN and have been using for nigh on 5 yrars). One starts very low, only 1.75mg, slowly working up over a few months to 4.50 or 4.75mg per day. Taken at bedtime. Holds the inflammation in check. See: lowdosenaltrexone.org for full details. Available in most corners of the world - and the LDN website gives leads to dispensing pharmacies where you can get. There is an excellent yahoo group: _[removed]_ (can recommend).

As to drugs. There are several. From the usual NSAIDS : non steroidal anti inflammatory drugs - that 'can' cause horrible damage to the gut(as did to mine) to DMARDS (methotrexate; sulphasalazine; etc) and the hefty biologics (Humira; Simponi; Remicade etc) you can google all this information up. Your rheumatologist will and can discuss the drugs with you.

In addition. Do visit the big support group, kick as .org. http://kickas.org full support group, all the information you can want, and a great bunch of people - now numbering nearly 10,000 members - no, they don't all post!!

There are many forums on KA, including, diet; alternatives; drugs; surgery; general; exercise and activities; an excellent general AS information forum with ALL the up-to-date medical information - links to EULAR (heavyweight International rheumatology information). EULAR is pharma supported. Their initial work was excellent, superb papers covering all the aspects of AS including information on scans and X-Rays. Male and female presentations etc etc with a definite angle to EDUCATE rheumatologists world wide. But now has certainly dropped off... This does not detract from their initial published papers, but later papers are not up to the initial standard of interest. Evidence shows tendency *push pharma and drugs now.
http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=postlist&Board=33&page=1

(Please do note that the biologic drugs can cause massive side effects including that of osteoporosis and cancer. You must do your own research, be proactive and steadily collate the information. Make notes as you go along. And, note that we are all different, each will react differently to drugs and circumstances! Nothing is set in concrete).

Then the general support sites per country - as in America, UK, Canada, Australia, France, etc etc. Useful, but to realise pharma driven and pharma supported. Their forums are not that much use. The American site has a set of very good stretching exercises that you can follow. Also, the UK site has a series of stretching exercises and a CD that you can purchase.

IF you are based in the UK. Then try and get on the Bath Hospital (known as the MIN) exercise programme. This is a two week residential course just for spondys! Superb. Details to this on NASS: National Association Spondylitis Society and of course, from the Royal Rheumatology Hospital, Bath (the MIN).

Research and do even more research. Remember, your body. Oh, and one more thing, women with AS present differently to men with AS. Women tend not to fuse as much nor to end up with the typical bamboo spine. Again, nothing set in concrete.

Hope this has helped.

MEC
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