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Joined: Jan 2010
Posts: 2,105
C
cemc Offline OP
Major_AS_Kicker
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Major_AS_Kicker
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Joined: Jan 2010
Posts: 2,105
I got contacted about a study on the impact of exercise on AS via NASS that uses myclinicaloutcomes self reporting https://www.myclinicaloutcomes.co.uk/Content/HowItWorks

It seems quite a useful way of keeping track of disease progression, though I'm not sure about how they are going to be able to analyse whether exercise really does impact on disease. The other potential use for myclinicaloutcomes is that it can feed back directly to your doctor, allowing them to also monitor your progress. Has anyone else used myclinicaloutcomes for monitoring?

One criticism I did have about the way the AS study was set up was that in the initial enrolment it gave a list of "treatments" you had to check, and that didn't include either LDN or diet, or even short dosepak type steroid courses, which are currently the only treatments I have.

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
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in U.S. so no to your question,

but,

do they have an "other" that you can check and then a blank to fill in those others? if a written form, i'd probably add then in that way...if electronic, then of course you can't add something not there.

lack of LDN or diet doesn't surprise me...i'm always having to educate my doctors on LDN.....i have good ones now who show great interest in learning about it and are happy that it has helped the enthesitis so much.....but no space for steroids? before humira, that was my saving grace for the flares...double sided sword, i know, but effective short term.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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