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General Message Board for Ankylosing Spondylitis and Related Diseases
01/12/19 08:52 PM
I have just started this medication as of January 1st starting with the smallest SQ dose every 2 weeks and increasing as indicated. I'm not exactly sure what the treatment goal is for this medication except for prednisone sparing. I have also been referred to an endocrine specialist to evaluate for adrenal insufficiency. It was refreshing to hear from my rheum that I was still relatively young and healthy. I didn't detect any sarcasm and I guess he was being sincere.

In any case, this will be a new approach for me. I'm not that comfortable taking this medication while taking prednisone because of some past experiences with infections. Whether or not I continue taking it will be decided in April by the endocrine specialist. Because of the possibility of permanent prednisone induced adrenal insuffiency I may be taking prednisone for life. It may seem stange but I would be Ok with that outcome ... I think.

I have noticed a few contributors on this forum who are currently taking Actemra or have trialed it. Any advice or words of encouragement would be appreciated.
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Athletes Against AS - Tips For Staying Active With AS
01/09/19 11:46 PM
Hello! My 13 year old daughter was just diagnosed with AS last week. She is a competitive gymnast and after 8 weeks of xrays, CT Scan, MRI (they suspected fracture in back from vault) but blood work revealed she has AS. The doctor said it was caught early and no damage. She is starting on Humira this week and he told her she could return to gymnastics but listen to her body. This is all new to us and just wondering how realistic is really is for her to continue her passion? We are entering competition season and she was thrilled to get the ok to return and not miss out on her entire season, but I don't know how realistic it is for her future. Has sports been ok for most of you?
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Athletes Against AS - Tips For Staying Active With AS
01/09/19 10:29 PM
Looking for any advice on being able to continue basketball at a high level with a new AS diagnosis. Some days are better than others but after 20-30 minutes pain begins to return to the SI joint which is the main area affected by AS at this time.
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Support Groups Information
01/07/19 05:44 PM
Morristown, NJ- Saturday, January 5, 2019: https://www.spondylitis.org/Community/Support-Groups/Morristown
Hollywood, FL- Sunday, January 6, 2019: https://www.spondylitis.org/Community/Support-Groups/Hollywood
Denver, CO- Monday, January 7, 2019: https://www.spondylitis.org/Community/Support-Groups/Denver
Clinton, IA- Tuesday, January 8, 2019: https://www.spondylitis.org/Community/Support-Groups/Clinton
Piedmont Triad, NC- Wednesday, January 9, 2019: https://www.spondylitis.org/Community/Support-Groups/Piedmont-Triad
Lansing, MI-Saturday, January 12, 2019: https://www.spondylitis.org/Community/Support-Groups/Lansing
The Woodlands, TX- Saturday January 12, 2019: https://www.spondylitis.org/Community/Support-Groups/The-Woodlands
Los Angeles, CA- Sunday, January 13, 2019: https://www.spondylitis.org/Community/Support-Groups/Los-Angeles
Elmira, NY- Monday, January 14, 2019: https://www.spondylitis.org/Elmira-Support-Group
New York City, NY- Tuesday, January 15, 2019: https://www.spondylitis.org/Community/Support-Groups/New-York
SoCal Parents, CA- Tuesday, January 15, 2019: https://www.spondylitis.org/Community/Support-Groups/Southern-California-Parents
Baltimore, MD- Saturday, January 19, 2019: https://www.spondylitis.org/Baltimore-Harford-County-Support-Group
San Diego, CA- Saturday, January 19, 2019: https://www.spondylitis.org/Community/Support-Groups/San-Diego
Oakland/SF, CA- Saturday, January 19, 2019: https://www.spondylitis.org/Community/Support-Groups/Oakland
Philadelphia, PA- Saturday, January 19, 2019: https://www.spondylitis.org/Community/Support-Groups/Philadelphia
St. Louis, MO- Saturday, January 19, or Sunday, January 20, 2019 (TBD): https://www.spondylitis.org/St-Louis-Support-Group
Chicago North Suburbs, IL- Thursday, January 24, 2019 (Page Coming Soon)
Sacramento, CA- Saturday, January 26, 2019: https://www.spondylitis.org/Community/Support-Groups/Sacramento
Leesburg, VA- Saturday, January 26, 2019: https://www.spondylitis.org/Community/Support-Groups/Leesburg
Dallas, TX- Saturday, January 26, 2019: https://www.spondylitis.org/Community/Support-Groups/Dallas
Bristol, TN- Wednesday, January 30, 2019: https://www.spondylitis.org/Community/Support-Groups/Bristol
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General Message Board for Ankylosing Spondylitis and Related Diseases
12/29/18 03:34 PM
I have had pa in in my left hip and down my left leg for the last 3-4 weeks.

The pain at times is excruciating, walking more than a 100m is almost impossible (I think I am supposed to exercise it?) Going shopping is difficult just standing at the till without crying out. Most of the time it just throbs, even when lying down.

I was diagnosed with AS 12 years ago but have been pretty pain free since starting biologics about a year ago. I am taking ibuprofen for the pain as I don't like taking the cocodamol too frequently.

Anyone else have similar? Or any advice?

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