Patient Comments: Ankylosing Spondylitis - Treatments

What was the treatment for your ankylosing spondylitis?

Comment from: thush, 35-44 Female (Patient) Published: October 31

My first symptoms of ankylosing spondylitis started when I was 24. I got this terrible pain behind my ears. When I went to my family doctor he said I am getting my wisdom teeth. But I never did get any wisdom teeth. After 6 months I got a back ache, then stiff neck. I consulted a doctor, and he gave me some pain killers and I was ok for about 4 months. Then I got a red eye and my eye specialist gave me some drops. Then I got this unbearable neck pain again. I told my doctor to do all possible tests. He took an X-ray of my neck and said I have cervical spondylosis plus extra upper rib. After two weeks I went to see the same doctor since I developed a pain on my heel. He said it's impossible, he told me to continue with my exercise. Nothing helped, doctor after doctor, I was feeling that I have fever, but no temperature. My blood test shows that I am anemic so my family doctor gave me iron tablets. I have to say I am a vegetarian so my family and friends said it's due to it. For last three years I feel tired all the time. But I manage to do all my work still doing it. Last year my right eye got red again so I went to see eye surgeon. She gave me some medicine, and I was ok. But within three days I got it again. My eye doctor said to stop my shampoo, etc. And gave me some more drops. Again I got a red eye within two weeks , and this time my eye doctor asked if I have any back pain I said yes, and she asked me why didn't I tell her beforehand (how am I supposed to know there is a link). I was referred to a rheumatologist .Now I know it's not my mind. At least I am mentally OK though I am depressed. Only thing that helps me is pain killers, heat pad, sleeping on the floor, flat surface. I do exercises regularly. I don't get proper sleep.

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Comment from: Z, 25-34 Male (Patient) Published: March 30

I injured my sacrum when I was 15. From then until my AS diagnosis at 28 my pain became progressively worse. I remember at 24, there was a spike in pain and (looking back) the start of noticeable AS symptoms. It is so embarrassing being so young and not able to move like everyone else. Or you cannot go out on Friday night because you literally cannot get out of bed. I follow the paleo diet, avoiding starch at all cost. Tremendous helper. I have also been following the Marshall Protocol for the last 6-months to treat my AS. I went from being so stiff I could barely get out of bed-to-only needing 200mg of Advil every 24 hours to keep my inflammation down and live my daily life. 1 day after starting marshall protocol, my inflammation noticeably decreased and my left Si slid back into joint when I got out of bed. Up until then, we thought it was fused.

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Comment from: citycowboy, 25-34 Male (Patient) Published: March 20

I was struck down with ankylosing spondylitis at 24. It hit me over night, the worse pain I have ever experienced. I am now 33 and still suffer chronic back pain just about every night. I am lucky to get 4 solid hours sleep a night and sometimes I just don't get any as the pain is unbearable. I saw the specialist and was put on mobic - these didn't even ease the pain, I was told about an injection (daily) and I am yet to be put on this treatment!!! I feel for anyone who goes through the pain I do, I wouldn't wish this on my worst enemy and believe me I hate the pr*ck!!!!!

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Comment from: S.Saad, 45-54 Male (Caregiver) Published: February 08

The 13 years I've been married to my husband, he's had this disease. He just found out a month ago. The great thing is, he's started on Embrel and he's a new man. He can turn his neck, he's sitting up straighter, has no pain, He moves without the stiffness he used to have, and even his bm's are normal now(he's always had diarrhea). When he told the dr. that he's having normal bms for the first time in years she tested him for chrohn's disease (which is a symptom of this disease), which came out positive. She did say she was going to change this med. for another one similar to Enbrel but is easier on the digestive track. There is hope! I'm so excited that my husband can move again without pain!

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Comment from: forester, 45-54 Female (Patient) Published: January 19

First symptoms when I was 22. self-treated symptoms w/ ibuprofen. Diagnosis at 33. Lucky to have the best rheumatologist in the state. Started with Rx NSAIDS but had stomach problems, plus they lose effectiveness after a while. Now on Remicade. Have had arthroscopy on two shoulders and one hip. Been down many times but I keep getting up! At 49 I still work as a forester on rough ground. I still camp. KEEP MOVING, KEEP STRETCHING, don't let anyone tell you no.

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Comment from: no break in pain, 25-34 Female (Patient) Published: November 30

I am 33 year old female who wasn't diagnosed until I was 22 years old. Symptoms started when I was 16. In the beginning doctors tried steroid injections and pain pills. Today they use steroids when I have a really bad flare up, naproxen twice a day, pain pills 6 times a day, Humira once every other week, muscle relaxers, and I try to go to physical therapy but most days are too painful. I also have the eye inflammation and fusion has already started in my back and ribs. I'm a single mom and most days I'm so tired I can't do anything, but what I have to for my children. My neck hurts so bad that I can barely turn to look at anything. X-rays don't show any damage there yet but I'm waiting because I know it's happening. I lost my insurance and my doctor helped me be able to stay on humira by writing the maker. Hope this helps someone else who's struggling to make ends meet and just trying to feel better with whatever they can. :)

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Patient Comments

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Ankylosing Spondylitis - Symptoms Question: The symptoms of ankylosing spondylitis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Ankylosing Spondylitis - Experience Question: Please describe your experience with ankylosing spondylitis.
Ankylosing Spondylitis - Severity and Progression Question: Do you or a relative have ankylosing spondylitis? Please share its progression, along with treatments.
Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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