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I got diagnosed with AS about 4 years ago, I'm 56 now. I've been extremely stiff for years and had bouts of debilitating back pain/sciatica in my early 30s, but was never diagnosed.
I was seeing a Physiotherapist for a few years and she said there is something seriously wrong with your body. I get that a lot from women. LOL.So I went to see my GP who sent me for an ultrasound of my kidney. I bolted to the walk-in where I found a very good and kind GP who tested for everything from Cat Scratch fever to HLAB27. Well the HLAB27 came back positive and my journey through Rheumotology land began.
Rheumy #1 had 0 bedside manner and did not believe I had AS, until they had x-rayed/MRI'd everything and I failed the flexibility tests miserably. She was big on pushing Humira, even though I had no active inflammation and I have not suffered any pain in years.
Rheumy #2 was very well respected, but a complete flake. He was tried to tell me I had enlarged tendons; of course I do, I work out to keep the pain at bay. I still felt pretty good at this point.
The last couple of years other body parts have started to bother me, knees, shoulders, lungs. It's mostly tendonitis that's getting to me, which I understand can be an AS side effect. I have no idea if the breathing issues are related and neither does anyone else. My latest inflammatory markers are still quite low. But the x-rays from Rheumy #3 show my mid back heavily calcified, which explains the worsening stiffness. But my HLAB27 came back negative this time. WTF.
So based on the x-rays they want to put me on Humira. I asked about the benefits and they said pain relief and I would feel better. But I've never had much pain since my 30s and my inflammatory markers are low. But the spread of my fusing vertebrae is concerning, along with the other possibly related body issues. I would love some relief from the stiffness, but my understanding is that there is no reversing the current state of my diseaase. Not to mention the laundry list of Humira side effects.
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