Has anyone tried stem cell therapy
I’m going on 3 years now with PMR and my rheumatologist indicates she’s done all she can. I am now on kevzara and tapering down my prednisone. I have an appointment with the bioadvanced medical clinic in tiajuana for consultation on stem cell therapy. Wondering if anyone has tried this and had success.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
My first occurrence of PMR lasted 3 and half years until I was able to taper off of prednisone with the last six months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone and only have an acceptable level of ache/pain/stiffness when I got up in the morning. While there is some evidence that stem cell therapy may help I would have a concern about the facility doing the stem cell therapy due to process involved to collect the stem cells, process them and then inject them into your body. Here's some research from 2021 while you wait for others to respond.
-- Clinical application of mesenchymal stem cells in rheumatic diseases:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8579678/
This is from May 2024 - Colorado hospitals detect 3 cases of infections linked to stem-cell treatments received in Mexico: https://www.denverpost.com/2024/05/10/stem-cell-infections-mexico-colorado/
In reply to you delving into a stem cell therapy - I worked in gene therapy - those which replaced missing or mutated proteins. Will you learn what pathway in PMR the stem cell transplant will "fix" ? It seems to me so much is NOT known about PMR , a specific target would be helpful ( like an autoantibody e.g.)
I'm going to paste this here because I do know someone with gout and yikes ! I think PMR pain was way more manageable !
It is a good explanation of what is specifically being addressed in gout patients :
https://medcitynews.com/2024/07/gout-arthritis-grobio-harvard-startup-inflammation-metabolic-disease/
My concern about traveling out of the county for health care not offered in the US is the commitment to the "Do no harm" portion of the Hippocratic Oath we have here. If you are comfortable that they have done the research and the adverse effects risks are properly mitigated then considering the treatment seems reasonable.
I personally have sought private pay treatment for procedures done here in the US but not covered by insurance for one reason or another so am not opposed to seeking what works for you personally.
I had my initial PMR flare for 5 years before it went into remission. It went undiagnosed for 1 year. It was horrid not knowing the cause or the treatment for the pain. The mental games a PMR flare plays with you can be as bad or worse than the physical pain. My wish for you is that you find an effective treatment that brings you health and peace.
I would also have concern for you traveling to Mexico for stem cell therapy. I also believe in alternative medicine—whatever works for you, but I would hesitate getting this type of treatment in Mexico (Tijuana) I do wish you the best in your health journey!
I have no more alternatives for a normal life. I’m willing to try almost anything to get rid of the pain and debilitation that is crippling me. Hopefully I will be able to report a new alternative to the medication route. TBC
No but would like to hear your results!
@jds2123
I’m so sorry to hear that you believe you have no other choice but to get a risky procedure done in Mexico.
Wishing you the best in your journey …..
@jds2123 I have several ideas that I am framing as questions to you. If you wish to answer these in this forum, please do, however I do not feel the answers necessary, simply food for thought.
Have you considered changing Rheumatologist? or getting a second opinion?
Have you gone after the pains one at a time? I did this and am being treated by a Pain Mgmt doctor for Greater Trochanter Pain Syndrome, pending meniscus surgery in the right knee, shoulder aspiration of a pocket of accumulated inflammation (it did not return), Pain Mgmt for neck compression nerve pain, hysterectomy for hip girdle pain, knee injections for osteoarthritis, shoulder injections for osteoarthritis, plus a few more misc items.
Have you requested physical therapy to help you better understand your pain points as well as possibly design an exercise plan?
Have you had an extensive physical exam that includes testing for vitamin and mineral deficiencies that can cause subtle problems that are difficult to identify?
Have you carved out time daily to focus on something you want to do that is unrelated to all this?
@ jds2123
My thoughts too…. First thing I would change doctors, get a second opinion. It does not sound like you got the treatment you needed to put you in such a frame of mind of hopelessness 🥲
Than you for your insight. My goodness. Bless your heart. I have consulted a pain mgmt Dr and taking tramadol. I am a physical therapist so I am aware of alternate treatments. All my docs think that pharmaceuticals is the answer but only treats the symptoms. I’m looking for a treatment that focuses on the problem itself.