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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Pea, Thanks for your input. Since I don't get Uveitis, that is experience I don't have to share. But what you said about switching from Humira to Remicade…..I wonder if that might be something for me to consider down the road. Week one is often very good, week 2 is variable. Rheumy said I could take Humira every 10 days like crohn's patients of his do, that's another thing for me to consider. I may just be going through a bit of a flare though and so things may even out again, like they were in early December when I remember feeling good from shot to shot, a full two weeks. I bragged it was the first time that had happened since being on the Humira, and then boom…a flare  But not one bad enough for pred, so improvement.
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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Joined: Sep 2011
Posts: 37
Member
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Member
Joined: Sep 2011
Posts: 37 |
Thank you for the input, Pea; it's helpful for me in trying to get a more realistic handle on what may or may not be expected, and how the risks are handled. So much better than hearing it from docs who've not experienced it for themselves & only give textbook answers. I know not all docs are that way, but the Rheumies I've tried here have been. I really appreciate your taking the time to include your experience.
AS 30+ yrs HLA-B27 positive Crohns (20 yrs of NSAIDS controlled AS but destroyed gut) Chronic spontaneous tearing of tendons & ligaments; limited walking ability Humira, LDN, LSD, L-Glutamine, multi-vit, vit d, vit c, adjustable bed, every pain patch and/or topical analgesic known to man, Nortriptyline for pain.
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Joined: Feb 2011
Posts: 1,968
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968 |
Your welcome Happygramma. I have had this since I was 28 years old and I'm about to turn 56 so a long haul with a lot of experience. I'm a happy grandma too!
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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