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#278920 - 09/06/17 12:29 AM Re: New and not yet diagnosed with questions [Re: kglenn]  
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PSO1957 Offline
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Linking pain with inflammation? So no pain, no inflammation? Makes sense to me. I have pain that is responsive to prednisone. So 2 weeks before body scan (nuclear study) I started a prednisone taper. Was down to half the dose and of course significant pain by the time the scan was done. "Lit up like a Christmas tree", the Rheumy said. A MRI picks up inflammation, but it also picks up changes in the SI joints and the spine that are characteristic of AS. You don't have to be in a flare to have a positive MRI. And you don't have to have a positive MRI to have AS. Clear as mud, hey? Good luck to you in your journey to find answers.

#278924 - 09/06/17 02:53 AM Re: New and not yet diagnosed with questions [Re: kglenn]  
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Good to know, PS01957! Scleroderma is also often 'clear as mud' so I guess I need to get used to uncertainty. It doesn't come naturally to me, though--LOL!

Last edited by kglenn; 09/06/17 03:01 AM.

Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke, Factor V Leiden (8/15)
AS symptoms: right heel enthesitis; fluctuating mild low back, hip and neck pain; normal MRI
Treatment: Xarelto; Nitro bid; Voltaren gel; vitamins D3, B6, B12, folate; probiotic

#278925 - 09/06/17 05:12 AM Re: New and not yet diagnosed with questions [Re: kglenn]  
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A suggestion on the X-rays of your SI joints is to ask your rheumatologist to look at them as well. Often radiologists will call changes degenerative or be ambiguous if they are not well-versed in AS. It can be difficult to see sacroiliitis if the radiologist doesn't see it often. My initial X-rays many years ago said "bilateral sacral iliitis" and I thought to myself that doesn't sound like any big deal until I started researching it. And wound up here:)

I hope that you can get the answers you need soon.


Barbara/Age 65/Diagnosed with SpA in 2009. Unable to take NSAIDs due to gastritis. Failed sulfasalazine, Humira, Actemra, Enbrel, Rituxan and Orencia. On Xeljanz and MTX.
#278926 - 09/06/17 02:12 PM Re: New and not yet diagnosed with questions [Re: kglenn]  
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kglenn Offline
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Thanks for the suggestion, Barbara--I appreciate it!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke, Factor V Leiden (8/15)
AS symptoms: right heel enthesitis; fluctuating mild low back, hip and neck pain; normal MRI
Treatment: Xarelto; Nitro bid; Voltaren gel; vitamins D3, B6, B12, folate; probiotic

#279023 - 09/15/17 05:32 PM Re: New and not yet diagnosed with questions [Re: kglenn]  
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Camerican Offline
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Dallas
From what a radiologist once told me, the fact that you have bilateral sacroiliac degeneration, instead of just unilateral is one indicator of ankylosing spondylitis (AKA undifferentiated spondylosis).
I've had AS for 10 years and though I'm constantly in pain (SI joints, heel/foot, thumbs, elbows, ribs, eyes, ankles, & knees) my inflammatory markers rarely show anything.
The abnormal measurement of your back when bending over is another point for AS.
Make sure you keep exercising! It's easier to put into remission earlier rather than later.
Keep strong.

Donna

#279030 - 09/16/17 03:35 AM Re: New and not yet diagnosed with questions [Re: kglenn]  
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kglenn Offline
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Thanks, Donna--everyone!

I was back at the rheumatologist's office today for my follow up. The ultrasound on my inflamed heel showed both enthesitis and tendonitis. When my doctor reviewed the X-ray images, he felt that some they looked suspicious for AS, but that it was not overtly apparent. He has ordered an MRI of my SI joints, which is scheduled for next Thursday.

He has diagnosed my with undifferentiated spondyloarthitis and said he will change that to AS if the MRI shows bilateral damage.

We are starting conservatively with a course of steroids plus seeing a PT for taping of my heel plus ice to try to reduce the enthesitis/tendonitis. If that is not successful, we will look at something stronger.


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke, Factor V Leiden (8/15)
AS symptoms: right heel enthesitis; fluctuating mild low back, hip and neck pain; normal MRI
Treatment: Xarelto; Nitro bid; Voltaren gel; vitamins D3, B6, B12, folate; probiotic

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