Patient Comments: Ankylosing Spondylitis - Severity and Progression

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

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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Comment from: Ryeod, 25-34 Female (Patient) Published: June 27

I have AS. I got diagnosed at age 25. I've been on Enbrel since 2006. I am 33 years old now. I had a baby at age 30. I find it difficult to keep up with my 3-year-old son some days. He is very active, and I am stiff at nighttime. I am a RN as well. They're both challenging jobs, and I am not sure how long I can keep up with working. Enbrel only works for a week. By day 10, I start to hurt a lot and need to take the shot. I am not on any prescription pain meds but I take ibuprofen as needed. I hope they find a cure for this curse of a disease.

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Comment from: mikeswife, 45-54 Male (Caregiver) Published: May 12

My husband was diagnosed just over 1 year ago with ankylosing spondylitis and he seems to be getting worse every day, he can barely get out of bed without assistance. We go to doctors and they make him feel like he is just some nut that cannot take pain. It is so very frustrating. He was on Humira for 6 months and had 2 septic infections. He can hardly sit due to pain in low back above his tailbone area, stays swollen all the time in legs feet and hands; left hip and arm now giving him trouble as well, he is exhausted all the time! I try to keep him moving and upbeat but he wants to give up, what do I do? I hate this but it is the hand we were dealt and I am trying so hard but the stress is about to do me in also. Any advice, I will listen!

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Comment from: StillKicking, 45-54 Male (Patient) Published: November 20

I have been living with Spondylitis for 26 years (I am now 52 years old). My back bone is somewhat fused and stiff and I am on Enbrel since 2006. I am still working. I am very lucky to have a wonderful family that is taking care of me. I have also had some rib cage fusing.

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Comment from: A,smith, 45-54 Female (Patient) Published: October 08

I have ankylosing spondylitis (AS). I have seen many physicians for severe back pain and finally went to a rheumatologist. I take sulfasalazine, hydroxychloqine, and tried Enbrel. I have started Remicade. However, I became very ill with pneumonia and had to put things on hold. I have severe spinal pain daily. I take pain medication. I have been diagnosed with fibromyalgia, COPD, and connective tissue disease. I have fractured (stress fractured) my ribs and both feet. The pain seems to be getting worse. I struggle on a daily basis.

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Comment from: Ujjwal, 25-34 Male (Patient) Published: August 12

I was diagnosed AS at the age of 17. Since then, have been taking Tab Sulfasalazine daily morning and evening. Also, been taking alternative treatment in homeopathy for last 5 years. I have good relief from pain and take about 3-4 pain killers a month on need basis. I use Tab Etiocoxib. Primarily, my back is affected. I keep doing light exercises every day and it helps me maintain mobility. Cannot stop fusion of vertebrae, but there's no bending of back bone. Every few days, pain attacks do happen. I have experienced that stomach conditions seem to increase pain attacks.

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Comment from: dansgal, 55-64 Male (Caregiver) Published: June 04

My husband has severe ankylosing spondylitis. His neck is fused. He has a very hard time trying to breathe. He has a hard time in the dampness or cold weather. Our doctor has him taking pain medication (naproxen). Our doctor cannot give us a time frame on how much longer he will live. He hopes that he will live a couple more years.

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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 - 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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