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Ankylosing spondylitis: anyone else?

Spine Health | Last Active: Dec 1 11:25am | Replies (82)

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@jlf2

Can anyone share information about spondylitis and help with pain and inflammation

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Replies to "Can anyone share information about spondylitis and help with pain and inflammation"

@jlf2 You may want to look at this discussion where you can connect with other members who have ankylosing spondylitis. I'm sorry you are dealing with this painful condition.

Spine Health - "Ankylosing spondylitis: anyone else?"
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

I have a site that I go to called mySpondyitis I was just cerium q
What was here about it but could not find mucky about it
Thank you it is very painful and not much seems to help the pain or the inflammation

@jlf2, you will notice that I have moved your post into an existing discussion on the same topic. @jenniferhunter had shared this same discussion with you. You can find it here now:
- Ankylosing spondylitis: anyone else?: https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

I see you've jumped in and connected with other members since as well.

Hi there- I don't have AS, but I have a related condition my rheumatologist refers to as seronegative spondyloarthritis--the difference is that my inflammatory arthritis only affects my peripheral entheses (the place where tendons connect to bone), and so far there is no involvement of my spine.

Do you have a confirmed diagnosis yet, and are you working with a rheumatologist, and what treatments have they recommended? That would be the best starting point because treatment requires prescription medications (though you can supplement with other strategies too).

In my condition, I don't have any elevated inflammatory markers, which made it very difficult to diagnose (which I understand can also happen with AS), so the diagnosis was made clinically (based on my health history, family history and symptoms). As it was explained to me, the first course of action are high doses of NSAIDs. If those can't be tolerated or aren't effective, there are some oral medications, and last options are biologics such as Humira, Enbrel, etc.

I have one kidney, so long-term use of NSAIDs is not safe for me; I had to jump straight to sulfasalazine (which did nothing but make me nauseous and turn my urine bright yellow!) and then to Enbrel. Now I take Humira. It relieved most of the pain we attribute to my inflammatory arthritis, but I still have pain from co-occurring conditions. I also do a lot of PT, gentle exercise, and I've tried acupuncture. I also take low dose naltrexone (LDN) for fatigue. It's suspected to also act as an anti-inflammatory, but the research isn't conclusive.

All the best to you!