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Jan 16th, 2023
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If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Thanks Sue, I'm keeping my fingers crossed too! 
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF  
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Hi Megan...thanks for the support, I'm not sure, but I don't think I'm on the maximum dose, if I'm not, I will be soon as the doses are raised after 8 weeks for all study participants, I hope all is well with you....Take care.... 
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Major_AS_Kicker
Joined: Sep 2001
Posts: 2,192 |
That sounds great, now if it will work for MS also then I would be set. I hate the shots I have to take for MS, but the AS is what really causes me more problems.
Steve Orchard, Running from AS & MS
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Joined: Oct 2007
Posts: 1,731 Likes: 1
Diamond_AS_Kicker
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Diamond_AS_Kicker
Joined: Oct 2007
Posts: 1,731 Likes: 1 |
Hi and how is it going so far? Sounds very promising, and you are a trail blazer!
Jan
______________________
Jan
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Hi Orch...I really don't know if it would help your MS symptoms but I will pick the study doctors brain and try to get an answer for you on that but it would be great if you could get some relief in the AS area, I can't imagine trying to cope with MS too....you are definitely an inspiration....I was telling my sister about you last week, she was amazed at your accomplishments!  She's been having a rough go of it with her MS symptoms lately and I felt like she could really benefit from the site, so I directed her here and she's been "lurking" ...hopefully she'll be part of the gang soon.... 
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
It's going great Jan and thanks for the support, I hope all is well with you....
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Just an update...I had an accident Thurs. afternoon, I didn't think it was too bad but that night, it became apparent that I needed to get checked out. The ER doctor sent me to a surgeon and I'll have surgery Monday morning so I called the clinical trial doctor to let her know and I told her that I don't want to have to drop out of the trials, she contacted the surgeon to check the medications that he anticipates having to put me on, there's no contradiction there and the hospital agreed to let me keep on with the trial drug while under their care, the only thing they said of course was that the hospital staff can't dispense the medicine, so that worked out well.
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
Aw Michelle... I am so sorry to hear you had an accident and are in need surgery too.  I am glad to know it won't mess up your trial on this new med but more than anything I hope you will have a speedy recovery and that they will take great care of you. How long will you have to be in hospital for, do you know yet? Please take very good care and know that I'm thinking of you. mig
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Joined: Sep 2008
Posts: 745
Decorated_AS_Kicker
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Decorated_AS_Kicker
Joined: Sep 2008
Posts: 745 |
Michelle I am so sorry you had this happen and extremely sorry you need surgery. I am glad you are able to stay on the meds. Please let us know how you are doing when you can. I be praying for you.
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