Diagnosed with Ankylosing spondylitis 4 yrs ago! Pain since 20’s

Posted by ruth1942 @ruth1942, Jun 8, 2024

No doctor knew where my pain was coming from! RA, Fibromyalgia and many other diseases were given ! I took so many NSAIDs and destroyed my stomach and intestinal tract! Went to pain management with no relief! My Rheumatologist tested me about 4-5 years (blood) and found I have AS! I am now 81 y/o and have been taking Simponi Aria, an infusion every 8 weeks! I still have bad(more) and ok days! I sleep a lot more than normal!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Jennifer, Volunteer Mentor | @jenniferhunter | Jun 16, 2024

@ruth1942 Hello and welcome to Connect. I am including the Mayo information on Ankylosing Sponylitis here for those who may not know what you are referencing.
https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808
I'm sorry you're going through this as this is a difficult condition to manage. It is hard to be in pain all the time and for most of your life. I wanted you to know that you're not alone, and hope that it helps ease the stress a bit.

Do the infusions help you feel better?

spryguy | @spryguy | Sep 8 9:17pm

Has anyone with AS suffered a spine fracture requiring surgery

Lisa Lucier, Moderator | @lisalucier | Sep 8 10:06pm

In reply to @spryguy "Has anyone with AS suffered a spine fracture requiring surgery" + (show)

@spryguy - I moved your post here so you could chat with others talking about ankylosing sponylitis (AS) such as @jenniferhunter and @ruth1942.

These members can let you know if they or anyone they know with this condition may have had a spine fracture requiring surgery.

I'm guessing you have AS and have a spinal fracture? If so, what happened to cause the fracture, spryguy?

hendripl69 | @hendripl69 | Sep 9 6:51am

Have long term untreated ankylosing, just came thru a major 4 level lumbar repair including two bone grafts! My neck is next. The inflammation destructs the joints, ligaments, and eventually the bones in the spine. This is a very painful disease to combat daily.

Good luck and hopefully you are seeing a rheumatologist.

spryguy | @spryguy | Sep 9 5:48pm

Working on a referral right now
Thanks for your info

lesliek808 | @lesliek808 | Sep 9 6:14pm

In reply to @hendripl69 "Have long term untreated ankylosing, just came thru a major 4 level lumbar repair including two..." + (show)

@hendripl69 Thank you for sharing that surgery is an option. I'm already 62 and have suffered for over 40 years. I can no longer take nsaids, and I am now allergic to Remicade, which has helped all these years.

Jennifer, Volunteer Mentor | @jenniferhunter | Sep 9 8:00pm

In reply to @spryguy "Working on a referral right now Thanks for your info" + (show)

@spryguy I am glad you are seeking help. From what I have heard, AK is painful to live with. I am a spine surgery patient with a C5:C6 fusion. Are you working with a rheumatologist to try to control the inflammation? Did you find a spine specialist for a consultation?

spryguy | @spryguy | Sep 10 8:22am

Very new diagnosis. Dr appointment next week should be referred then . Thanks

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