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Ankylosing Spondylitis - Anybody have insight?

Posted on 3/5/20 at 8:34 pm
Posted by jcaz
Laffy
Member since Aug 2014
15936 posts
Posted on 3/5/20 at 8:34 pm
My PCP and Spine doc are 99% sure this is my issue. Headed to RA next month.
Has anyone here had it or knew somebody who did? I’m curious to hear if any of the meds actually work.
Biologics, TNF-Inhibitors, etc.
Been trying the anti-inflammatory diet with high end supplements for a few months and no luck in improvement. Pain makes exercise almost impossible.
Posted by DeafJam73
Baton Rouge
Member since Sep 2010
18679 posts
Posted on 3/6/20 at 6:23 am to
quote:

Ankylosing Spondylitis


This is a real medical term? Looks like a word a 5 year old made up.
Posted by Gorilla Fingers
Member since Jul 2011
1553 posts
Posted on 3/6/20 at 6:41 am to
quote:

Has anyone here had it or knew somebody who did
Unfortunately, AS is a chronic condition and not something you will be cured of; however, it can be managed.
I have it. You can ask me anything.

My experience with rheumatologists is that they will diagnose and prescribe drugs and that's about it. I do not even broach the subject about diets anymore as they usually are dismissive about the link between gut health and autoimmune disease. They are helpful in that blood work will be drawn each visit and it is important to monitor your c reactive protein level and sed rate to see how active your inflammation may be. If you can i highly recommend trying to get an appointment with the Mayo Clinic. They will spend a lot of time with you and also test you for common companions of AS: Crohn's, Colitis, Celiac. Do you gut issues as well?

In regards to gut, you are on the right track by trying anti-inflammatory dieting. I don't know the specifics of what you eat, but I made a lot of hard changes and have benefited greatly. You've got to get your gut healthy. Keep in mind, NSAIDs you may be taking for pain will keep your stomach torn up and the cycle of flare ups active. I wouldn't sweat that too much now though if you are in a bad way and need pain relief.

I'm not crazy about taking biologics, but yes thy have helped me a lot. I'm on Enbrel. Humira will probably what your rheumy will try first. Try to keep excercising. Fight through the pain. Trust me, you do not want to get fused.
Posted by bsn117
Member since Mar 2020
1 post
Posted on 3/8/20 at 9:42 pm to
Here is my somewhat brief story and experience with this. I was diagnosed in November 2018 with this after suffering from really bad back pain that would originate in the middle of the night and subside about an hour or two after waking, every single day since March of that year. I started seeing docs in May that year (PCP 3 times, spine doctor, chiropractor, physical therapist). No one could diagnose the issue, or why some other issues were popping up (random joint pain, neck pain, plantar fasciitis, achilles pain). However, my physical therapist did state my SI joint was the source of some of my pain that was going up to my thoracic spine. I googled this and came across AS so I made a rheumy appointment who quickly was able to diagnose me after an SI joint MRI and positive HLA-B27 gene.

Here is some of the fallout:

CRP and Sedimentation lab tests are normal so he suspects my case is mild, however I am monitored every 6 months with these tests. X-rays from my SI joint to my neck show no fusing. I have tried natural methods such as the autoimmune paleo diet, turmeric supplements, etc. None of this helped. I've been prescribed Celebrex 200mg daily which has greatly improved how I feel. Stress seems to be my biggest flare up trigger. While I know taking an NSAID every day isn't good, I don't really know what else to do because the way I felt before was misery. I try to mitigate the side effects by taking it after a meal followed by lots of water.

This post was edited on 3/8/20 at 9:53 pm
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