Patient Comments: Ankylosing Spondylitis - Severity and Progression

Do you or a relative have ankylosing spondylitis? Please share its progression, along with treatments.

Comment from: geelong man, 55-64 Male (Patient) Published: August 27

I was diagnosed with ankylosing spondylitis (AS) at the age of 20, and I'm now 59. I don't think there was a wide knowledge about AS among many doctors back then and it was a while after I started to feel pain in my feet and chest before I was seen by a more up-to-date doctor. I have been on many drugs in my time and had a laminectomy some years ago. After the operation I was a lot better for a while but the pain returned. I take a high dosage of prednisolone and Oxycontin to keep the pain down. I am about to start a course of etanercept as a last hope, as after nearly 40 years I sometimes feel it's all getting too much.

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Comment from: Darla, 45-54 Female (Patient) Published: March 12

While I have had back pain since my early 20s, I always understood it to be osteoarthritis due to injuries from a car accident. I took Voltaren for years until a few years ago I had bleeding ulcers and was told to stop taking all NSAIDS and even my Vicodin. Needless to say I became so stiff in my back that it was difficult to do anything but lie down or sit. This past summer I started having pain in my left eye. It was very sensitive to light and nearly swelled shut and my vision was blurred. I was very concerned and went to the emergency room. They diagnosed me with cellulitis, gave me eye drops and antibiotic. It did improve in time but, a couple months later the other eye did the same thing. I went to the optician who made my glassed and he sent me to an ophthalmologist where I was told I have iritis or uveitis. He also told me this condition is caused by an autoimmune disease. I was tested and told I have ankylosing spondylitis. I will be seeing a rheumatologist soon. I hope I will find some relief for my back pain that will not cause my ulcers to act up.

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Comment from: Greg, 55-64 Male (Patient) Published: November 25

I am 61, male with ankylosing spondylitis (AS). My entire spine and neck are fused, also with spinal curve at top and bottom of my spine. I have had chiropractic care for many years before discovering my actual problem, which was discovered by x-ray. Of course like most people with AS, I have tremendous pain in muscles and nerves, and suspect ligaments are now being calcified. Chiropractic care is not the popping kind of treatment, but rather non-force directional technique. My spine would not ever be able to tolerate popping. Medical doctor prescribed sulindac for inflammation, and I only take it when I can hardly walk. I have never had any other type medicine, such as biologics, etc., prescribed by doctors. I have always been so fearful of side effects, and having more problems from side effects. I also have generic Soma for muscle relaxer, but will take 1 tablet at bedtime, maybe on average 2 times per week. I have developed a high degree of pain tolerance, but I do not consider myself to be tough, or mind over matter thinking. I hurt a lot every day and night, and live alone, so it is very difficult for me. Someday I may need to take the biologics drugs, but until then I am trying to do without. I have massages, chiropractic treatments weekly, soak in hot water, with Epsom salt, and try to stretch. From what I've read, AS isn't a death sentence, and shouldn't shorten life in most patients, but you can really feel like you are dying or dead. AS is terrible, but don't give up.

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Comment from: Spillqueen, 45-54 Male (Caregiver) Published: June 30

My boyfriend was diagnosed with ankylosing spondylitis (AS) in 2012. After several months of run around from his primary care physician (PCP), he got in with a rheumatologist and has been much better. When it started he was very sore, stiff and tired. He missed time from work. Now he takes methotrexate once a week and has a Remicade infusion every four weeks. He is active (racquetball, weights) and has a pretty demanding job (airplane mechanic) but for the most part does well, on occasion when he goes more than four weeks between infusions, he 'feels weak' as he puts it and is more tired, but for now things are good.

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Comment from: LadyAne, 19-24 Female (Patient) Published: May 21

I have recently been diagnosed with ankylosing spondylitis, at the age of 24. I had back pain since I was 17 and regular sciatica which was diagnosed as piriformis syndrome. I am currently on Celebrex 200 mg twice a day and sulphasalazine 3 tablets morning and night. I find that there is only so much that medication can do for the pain and have found that the only thing that truly has helped for severe pain attacks is getting into the cold pool. Warm water is a no, try cold water, and if possible some freestyle and backstroke laps, no breaststroke. I find that I need to move in the cold water for at least 10 minutes before I have relief, but the relief I get is so worth it. If any of you are struggling with pain, give the cold water a chance and see if that helps. And for sleeping I find it helps if I sleep on my stomach with my knee (if one SI joint side hurts more) or both knees out and in, kind of like a frog"s knees go out or "butterfly sit". I find this really helps me sleep through the night. And if any of you go for a massage, don"t just let the massager/physiotherapist work on the area where the pain is, I find a massage to release all the back muscles and butt muscles helps. I hope this helps.

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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 - Treatments Question: What was the treatment for your ankylosing spondylitis?
Ankylosing Spondylitis - Experience Question: Please describe your experience with ankylosing spondylitis.
Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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