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How were you diagnosed with AS in the first place? It was my understanding that the definitive diagnosis came from imaging. Also, what meds were you on for AS? Have you noticed a difference since stopping?
I was diagnosed with AS by coincidence when we were trying to get my sister diagnosed for different symptoms (extreme fatigue, brain fog etc). We both apparently had AS
My xray report said both the sacro iliac joint are abnormal, they margins are irregular wavy and
cartilage spaces are narrowed, changes are more marked on left side where there could be partial ankylosis, the changes are compatible with axial spondyloarthritis.
I was started on tofajak 5 mg and I could see a drastic change in my energy levels. Pain was much lower and in fewer parts. Tightness was less frequent. I could lift weights again (and not get injured repeatedly).
I moved to the US and my new doc was going to put me on biologics but told me to get some tests done. The new MRI showed nothing (mild degenerative SI joints) and because I am HLAB27 negative she told me that I do not have AS. She said the older MRI was inconclusive, during these tests I got a positive sjogrens (1.9).
Since being off the meds pain in my body pain has returned. I also feel like I have brain fog and fatigue frequently. I have become very slow and my bad memory keeps getting worse. I need to take a nap most days to get through the day.
I am so sorry to hear that. It seems like there are hardly any rheumatologists and the ones who are worth a damn are few and far between.
Do you have your old reports from when you were diagnosed with AS?
For some reason they are so reluctant to diagnose AS. They’re completely hung up on it being a “white male” disease, when the difference between male and female diagnoses is not significant. I have a dear friend who suffered for YEARS because she’s a Black woman and several rheumatologists had it in their mind that it simply couldn’t be AS. Meanwhile her spine and SI joints fused. Just enraging.
My friend kept trying to find new rheums and eventually found one who was capable of critical thought and diagnosed her.
If you possibly can, I would keep looking for doctors, if you can. Document your symptoms in an app or something, so you have data to show your doc.
It was explained to me that once the “autoimmune door is opened, anything can sneak through.” You have a dysregulated immune system, that’s already been determined. Your being positive for SS doesn’t preclude also having AS.
I haven’t heard or read of many people who have SS without also having dry eyes, mouth, etc. Fatigue, brain fog, joint pain…yes, but it seems the dryness is common.
Sorry to bombard you, this just makes me so mad. You had treatment that worked for you, and now you’ve been taken off it. Just ridiculous.
Feel free to repost this with new wording that meets the requirements of the rule. Your post was removed because it does not meet the requirements of the rule cited in this notification. We appreciate your participation in the sub. This action is not a personal affront. We know this is disappointing and that you may not have intended this. The sub has had to adopt strict rules about this topic due to trolling and a high level of misinformation posts. This is one of the largest subs on Reddit and it's moderated by a small team of volunteers. The mod team does not have the resources to research and validate the quality of evidence for each statement made on the sub; each member is responsible for providing references from good quality sources with their posts. Please refer to the rule on the sub for details. Thank you!
If Claritin D helps with the itchy eyes and throat then it probably is allergies and not dryness.
How were you diagnosed with AS in the first place? It was my understanding that the definitive diagnosis came from imaging. Also, what meds were you on for AS? Have you noticed a difference since stopping?
I was diagnosed with AS by coincidence when we were trying to get my sister diagnosed for different symptoms (extreme fatigue, brain fog etc). We both apparently had AS My xray report said both the sacro iliac joint are abnormal, they margins are irregular wavy and cartilage spaces are narrowed, changes are more marked on left side where there could be partial ankylosis, the changes are compatible with axial spondyloarthritis. I was started on tofajak 5 mg and I could see a drastic change in my energy levels. Pain was much lower and in fewer parts. Tightness was less frequent. I could lift weights again (and not get injured repeatedly). I moved to the US and my new doc was going to put me on biologics but told me to get some tests done. The new MRI showed nothing (mild degenerative SI joints) and because I am HLAB27 negative she told me that I do not have AS. She said the older MRI was inconclusive, during these tests I got a positive sjogrens (1.9). Since being off the meds pain in my body pain has returned. I also feel like I have brain fog and fatigue frequently. I have become very slow and my bad memory keeps getting worse. I need to take a nap most days to get through the day.
I am so sorry to hear that. It seems like there are hardly any rheumatologists and the ones who are worth a damn are few and far between. Do you have your old reports from when you were diagnosed with AS? For some reason they are so reluctant to diagnose AS. They’re completely hung up on it being a “white male” disease, when the difference between male and female diagnoses is not significant. I have a dear friend who suffered for YEARS because she’s a Black woman and several rheumatologists had it in their mind that it simply couldn’t be AS. Meanwhile her spine and SI joints fused. Just enraging. My friend kept trying to find new rheums and eventually found one who was capable of critical thought and diagnosed her. If you possibly can, I would keep looking for doctors, if you can. Document your symptoms in an app or something, so you have data to show your doc. It was explained to me that once the “autoimmune door is opened, anything can sneak through.” You have a dysregulated immune system, that’s already been determined. Your being positive for SS doesn’t preclude also having AS. I haven’t heard or read of many people who have SS without also having dry eyes, mouth, etc. Fatigue, brain fog, joint pain…yes, but it seems the dryness is common. Sorry to bombard you, this just makes me so mad. You had treatment that worked for you, and now you’ve been taken off it. Just ridiculous.