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Ankylosing Spondylitis (Page 1)

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I have had AS for 4+ years. Does anyone else have it? I'd like to hear what you are doing for it and if it helps.

Thanks.
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First Helper mum1
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replied January 26th, 2009
medical marijuana
As there are no cures, and standard NAIDs and aspirin provide minimal relief for the condition, I have taken to self-medication via the ol' pot pipe. Of course, gaining acceptability from peers and permissibility from practitioners can be difficult. However, the anti-inflammatory results that occur from the hyper-stimulation of the CB2 receptors in the spleen has provided me with the best panacea for the symptoms.

Research it carefully. I imagine that you will experience a similar response to this therapy. Good luck and good health!

Ryan
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Users who thank diggity for this post: Cheeba 

replied April 4th, 2009
Ankylosing Spondylitis
well, as far as I know turpentine(Zalmanov) baths could help, because you need to restore entire body metabolism, local treatment is useless

Best wishes

p.s.

these baths provide supreme analgesic actions, as he wrote in his book "Anchylosis can be cured in 3-4 months."
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replied December 1st, 2009
I have had good results with Enbrel - a biologic drug.
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replied May 2nd, 2010
Ankylosing Spondelitis and medical marijuana
My father had severe AS for my entire life until he died in 1978 at the age of 67. He was terribly crippled and suffered for 30+ years.

I''ve had AS for several years - I don''t know exactly when I contracted it because the doctors kept telling me there was nothing wrong until I consulted a rheumatologist. She also said AS is a man''s disease and was not going to x-ray my back. I refused to leave the office until she approved the x-rays.

She apologized profoundly to me because I did have AS and there was already some fusion in my spine. It has progressed slowly over the past few years even when daily taking Plaquenil, then adding Methotrexate (weekly), and most recently Humira injections bi-weekly.

I''ve had flares over the years and most recently the past couple of weeks. Depo Medrol injections into the bursas have eased the pain, but I don''t like taking these steroids.

Is medical marijuana an option in the treatment of AS?
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replied May 17th, 2010
Ankylosing spondylitis medication
I have had AS for over 10 years now. Only in the past 6 years has it really become progressive. I can still work and lead an active lifestyle. You learn to manage the pain by finding what works for you. I am taking diclofenac sodium, methotrexate and in addition, I am starting on humira very shortly. I am a 30 year old woman, and i too had trouble getting diagnosed back when i was 17.
I also smoke weed for the pain and also for the nausea caused by all the prescription drugs. I also religiously do a home physio routine that is a combo of simple non-strenuous stretching. I find if i do not do my stretches each day, then I can really feel the AS more.
So, ya, do your stretches!! all the best, hope this helps...
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replied June 30th, 2010
ankalosing spondylitis
I am a 39 yowf who has had A.S. since I was 21. My doctor found it right after my only pregnancy. I've been on Enbrel, sulfa drugs, & now am on Remicade (w/ little success) & methotrexate. Nothing seems to work. I've been on disab. for 8 yrs now as nursing was no longer an option. My rheumotologist only seems to want to send me to the pain clinic these days. I can't sleep & recently my hips are now involed. I have spinal fusion going on & it just seems to get worse each year. Good luck to the rest of you out there. I hope u have better luck than me. Weed helps with my nerves but not the pain....Leigh
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replied July 14th, 2010
I will be 21 in November, and have had it since I was 16 or 17. Mine hasn't quite been diagnosed yet, but my Rheumatologist has me 2400 mg of ibuprofen a day. That is an aweful lot of ibuprofen. The spinal fusion has not started yet, but I am in quite a bit of pain every day. Mostly my hips and lower spine. I'm sorry that I can not be more help than that. Good luck with it.
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replied August 6th, 2010
I have just recently been diagnosed with AS about 7 weeks ago, although Ive been having problems for five years. One misdiagnosis after another. I finally saw a rheumatologist and she diagnosed me with AS. My sisters and my brother, who is now deceased had it also. I was prescribed enbrel and am now in my seventh week of treatment. Sorry to say that I have not seen any good results yet. Im still hoping and praying though. I have to know... what in the world is a turpentine bath and does it really help? If someone could please let me know I would be very grateful...
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replied August 19th, 2010
Hi everyone,
My father has had AS for the last 40 years and seemed to manage well throughout. My son was diagnosed with severe AS three years ago and is really struggling with his day to day life.
We have tried everything including Enbrel without enough relief. I have to let you all know of a site called roadback.org
(look it up) It explains a theory that all rheumatic disease inc AS has a trigger factor.
The trigger with AS is bacterium/mycoplasma. With antibiotic treatment over a long period of time excellent results have been known to happen. I have my son on antibiotics now and we are in week three. It is a slow road to recovery but worth a try. Please look it up and read all the info it. Take care.
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Users who thank mum1 for this post: hurdle13 

replied September 14th, 2010
My mother and I both have AS. Her spine has fuzed to below her rib cage, and I dont have enough money to get to a rhuemetologist so we have no idea how far mine has progressed. We have however tried 4 of the inhibitor shots Humira Cimzia Simponi, ect. with no relief. Indomyocin (sp) works if you have an iron stomach, but not for very long. We have talked to both our family practice dr and our rhumy and neither will prescribe the above mentioned antibiotics, they say there isn't enough research supporting the use of them. We are forced to stick with ibu and narcotic pain meds. Hope you can find something and if you do let us know!! Thanks! oh, does anyone know how to search for a primary care doc that specializes with arthritic diseases?
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replied September 14th, 2010
Hi Kneisen,
Have you become a member on roadback.org
It is free and full of people in our position who can advise you on everything including finding the right AP (antibiotic protocol) Doc. Use your same user name and I will know it's you and be able to advise you along with the other members .I use a different user name on roadback. If you want to use a diffent name tell your story and I will know it is you.
It will make everything easier to help you and your mum.
Take care
Mum1
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replied January 20th, 2011
I have been suffering from AS for best part of 30 years now. My father and 2 bothers also have it, and now my 12 year old son has been diagnosed. is is currently on crutches and he is suffering badly.

I read all these stories and about suffering, and desperation, and I really feel for all these people. However, I believe you can fight AS with a positive mindset, healthy lifestyle and minimum drugs.

I will never put my child on biologicals. The risks are just too severe. The only way to fight this is through constant exercise. There is no other way. Best is swimming, but I also run ( yes, it is possible - I have done ultra marathons ). You grind though the pain until you body loosens up, and produce its own inflammation fighting drugs. I use less than a 1/4 of the anti-inflams that I used to use before I started training. It does wonders for your mind as well, not to mention weight loss ( that is essential in fighting AS and chest / lung functions.

Please contact me if you what to share experiences.

All the best.
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replied April 26th, 2011
AS exercise
pmalan, I must ask about how much exercise you do? I believe that exercise is the best way to combat AS, but I have a recovery problem and only workout 3 times per week. I will attending a local AS meeting and your input on exercise would be helpful.
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replied April 26th, 2011
AS exercise
pmalan, I must ask about how much exercise you do? I believe that exercise is the best way to combat AS, but I have a recovery problem and only workout 3 times per week. I will attending a local AS meeting and your input on exercise would be helpful.
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replied March 29th, 2011
I have Crohn's Disease and Ankylosing Spondylitis...
17 years ago,after being a regular marijuana smoker for
a few years,I decided to take a break from smokeing it,
for a little while...And a couple of months after I quit
I got both of these diseases... I went to get some mari-
juana for the nausea,which I knew it helped with,and to
my surprise,after smokeing two puffs,all of the Crohn's
symptoms stopped to... No more rushing to the bathroom
25 times a day,looseing 1/2 cup of blood each time...
Just one trip to the bathroom per day like normal,and
not a drop of blood...For the next three or four weeks,
as long as I smoked a couple of puffs a day, every day,
or in the evening...
I went on to try the conventional medicines,but none
of them worked...at all even... the only thing that
worked was marijuana...At that time,no research had
been done,and it hadn't been studied,but luckily it
worked,and amazeingly well for me... And it has been
100% dependable for the last 17 years,as long as I
smoke a few puffs a day,I "never" have flares,or even
a drop of blood...never.
Also ever since I started useing the marijuana
regularly for my Crohn's 17 years ago,there has also
been no more progress with the A.S....No more fused
places...The only places that fused,are the few places
that fused back when I quit the marijuana 17 years ago,
but ever since I began smokeing the weed to get the
Crohn's under controll 17 years ago,there has been no
more fuseing also...
There has been official research done by Bath
University in england,and other reputable places to,on
the effects of marijuanna over Crohn's Disease..And
they found CB1,and CB2 receptors in the lineing of the
intestines, that respond to the cannibinoids in
marijuanna,and trigger a healing response...CB1,and CB2
receptors,turn healing responces on and off...
I haven't done much research on my A.S. yet... But I
have a feeling there might be CB1 and CB2 receptors in
the spine,and joints to...And marijuana may be
causeung them to operate properly there to...
If anyone has more info on CB1 and CB2 receptors in the
spine,please post an address to some info on it?....
Thanks, and I hope this helps...
Todd
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replied April 21st, 2011
TART CHERRY JUICE
Dear AS Members, May I try and brighten up your day a little...read on please. I had all the early symptoms of AS and just put this down to the sporting pressures placed on my body when youger. I'm now mid 30's and getting the Iritis (eye problems) etc with inflammation of this disease with pain and stiffness in most places. Life is a pain both physcially and mentally. You get to handle putting steriod drops in your eyes every hour for weeks but having a positive approach helps. Cutting to the chase, I read somewhere on the internet that TART CHERRY JUICE helped one sufferer. Having tried almost every known natural cure this one was like a gift from above. I've been on Naproxen and has made me feel real bad so recently stopped and when my first order of TART CHERRY JUICE arrived I drank the first litre in a couple of days. Since I have been drinking this stuff, I can honestly say it has virtually elimanated any of the really painful feelings and is like nectar from heaven. This is not a sales stunt, and for me worked virtually within days. Having investigated this magical drink there has never been any real scientific testing, other than animals which showed improvement! A litre is approx Ãspam£3.00 and if you remove all fruit drinks like Orange, Grapefruit, Pineapple, Lemon/Lime and just drink this juice I just hope it brings you the same rewards as me. After weeks of depression I am again starting to get some life back. Reading into the effect on the body the TART CHARRY JUICE actually stops the COX1 and COX2 which is good for AS. Please try this as does virtually what most NAIDs do without killing your organs or giving you stomach ulcers. May this work for you all. God made this planet and I believe put every cure in his garden. I'm not deeply religious but makes you feel you get your old life back! Take care all...Rx
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replied May 14th, 2011
Ankylosing Spondylitus and Diet
I agree with the last post! I have been struggling with AS for the last 11 years. I am a 31 year old man and have tried many things to help combat the pain and inflammation. After researching beyond the standard information with all of the medications and horror stories, I have found some peace from the website "kickas.org" There are hundreds of people with AS that talk on that site. I have found amazing relief from a study that was done by a man named Alan Ebringer or something like that. He, as well as many others advocate a Starch Free Diet to eliminate the issues. For the last 2 months I chose to go off of the indomethacin 75mg twice a day and see what I could do on my own. Aside from the learning curve of finding what foods contain starch, I have been pain free for 2 months now! WHen I eat something that I shouldn't have, my back flares up within 24 hours and the pain comes back. If that happens, I devour Tart Cherry Juice and drink a lot. It helps! Between prayer, starch free diet and tart cherry juice you will be on your way for sure! Hang in there and throw in some Yoga.

There are lots of approaches to this thing, but I feel it is necessary to look at the long term effects of what we are putting in our bodies and if it is worth it. Good luck to you!
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replied July 22nd, 2011
Hi.

Well I'm 17, and waiting for an appointment at the hospital. I have now had really bad back ache for two years, and also heartburn (Not sure if that's linked, but my uncle got it as well) I have also been suffering with really painful hips. It's now getting to the stage, where I am finding life really hard, because some nights I can't sleep, as I just can't get comfortable with my back, not sure about the likelihood of having it, but my grandad's spine is now fused, my uncle's got diagnosed at 24, and the fusing had started.
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replied August 28th, 2011
My father was diagnosed with AS,is it possible that i may get it
Hi.

I'm 19 years old, and my father has had AS for more than 30 years now. We have seen a rheumatologist and he said there are no symptoms to connect me to Bechterev's disease. So, what worries me now is, is there a probability that i still may get AS, even though my father says he got it from physical trauma and says it wouldn't be hereditary, as he was the first one in the family diagnosed with it. About me, i haven't had any pain in the spinal area, or hips, or neck stiffness.
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replied February 6th, 2012
I started testing when I was 9, but they didn't know the genetic marker so I was told I had a arthritis. Slowly the pain moved up into my knees, spine, wrists etc. I am now 27 and finally have a diagnosis. I am starting enbrel soon. I have been taking all the drugs for inflammation and nothing helps and I started to develop ulcers from it. I am looking into Medical Marijuana since it is Legal in Israel. It is suppose to help with the inflammatiion and ulcers. They said to drink it as a tea or use a vaporizer to help prevent damage to the lungs. There is a new clinical trial starting soon here where they use juice from the buds and leaves of the marijuana plant instead of drying it. The study in the lab shows that using the fresh juice is doesn't have the same psychedelic affects. The THC acid is broken down in the stomach so you get the same medical relief with out getting stoned. I have never used drugs and have always been weary of it because of the possible negative affects on short term memory. I am a student and I don't want to get stoned all the time so if this trial works out that would be amazing. I will post more when I know more. I am trying to be approved for the trial.
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replied February 24th, 2013
Plz post your progress
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replied December 16th, 2012
no starch diet.
I am on a no starch diet. It was very tough at first, but it's easy now and it puts AS into complete remission. I have no issues now, I don't need to stretch or take baths every day, I have zero pain and I actually feel really healthy for the 1st time in my life. It has completely changed my life. Look it up and give it a go, it's worth it Smile
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