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#277549 - 03/16/17 08:12 PM stay away from stem cell therapies
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Just wanted to post this as a warning to those who might be considering it:

Patients Lose Sight After Stem Cells Are Injected Into Their Eyes


Although it may not be the eyes, however the article says in general that stem cell therapy is a hoax with no clinical data of effectiveness.
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

#278011 - 05/20/17 03:03 PM Re: stay away from stem cell therapies [Re: Shippingnews]
batmanuelAS Offline
Registered Visitor

Registered: 03/24/15
Posts: 5
Do you know if Spondylitis Association donations go toward stem cell research?

If so, do you know if there is a prohibition of funding toward embryonic stem cells?

#278731 - 08/09/17 12:38 PM Re: stay away from stem cell therapies [Re: batmanuelAS]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 490
Loc: Los Angeles, CA
The SAA funds research for spondylitis, but there is no current requests from researchers to study stem cell treatment for spondylitis. The SAA is holding an Unmet Needs spondyloarthritis researcher conference on the NIH campus in a couple of months with leading research experts from around the world to invigorate and inspire spondylitis research for the next decade. The speakers have experience a variety of medical conditions to borrow from successes made in other diseases. If there is a viable pathway for efficacy with stem cell, then I would expect that to be considered. The conference is paid for by private donations from people living with spondylitis. It is not government or pharma sponsored. If there is a cure or new efffective treatment, then the SAA is looking for answers.
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

#278732 - 08/09/17 11:47 PM Re: stay away from stem cell therapies [Re: Shippingnews]
NotMeToo Offline
Registered Visitor

Registered: 07/12/04
Posts: 1126
Loc: United States
Legitimate stem cell research is not the problem. The problem is that there is not currently any legitimate stem cell research related to AS. The clinics that offer stem cell injections (for all sorts of things from weight loss, to autism, to macular degeneration, to arthritis and many more) are performing medical procedures that have no valid peer reviewed research and no safety studies. These unscrupulous clinics are promising results that they simply can not deliver. As quickly as the US FDA closes one clinic, one or more new clinic opens. One near me was closed by the FDA and the owner was prosecuted. Before he was out of jail, the owner had a new clinic up and operational.
Not Me Too!

#278734 - 08/10/17 10:55 AM Re: stay away from stem cell therapies [Re: Shippingnews]
awesomeman Offline
Registered Visitor

Registered: 05/30/17
Posts: 27
i worked as a physical therapist for a long time before the AS got the best of me and I can only share what I saw. PRP injections done in conjunction with surgeries tended to result in better outcomes. Not night and day, but noticeable. When it comes to stem cells(which is very different than PRP) very few people are doing stem cells. I never really came across it and never saw the well respected orthos using it. And since theres plenty of $$$ in it since it cash pay and still people werent using it. That leads me to believe, we just arent there yet with these treatments. While not a scientific response, I've noticed one of two things. If it works it becomes popular OR if it makes a lot of money it becomes popular.

Edited by awesomeman (08/10/17 10:56 AM)
diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex


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