- This topic has 9 replies, 5 voices, and was last updated 4 years, 3 months ago by
.
-
Posts
-
Hello Roadback Community,
I saw my AP doctor today, who is a functional medicine doctor, and he told me that he thinks MSCs could be a game changer in RA. He mentioned that until it becomes cleared by the FDA, doctors are hesitant to administer it in fear of losing their license. He mentioned that a doctor in Panama is doing it. Has anyone tried MSCs and what has you experience been?
I’ve read the book ( you can find on Amazon) written by the Doctor in Panama. In the book, he explains why certain stemcells can cause problems. The MSCs stemcells have only shown benefits. Personally, I have yet to try it. However, I connected with a few people who have and have benefitted tremendously.
The one in Panama is around $25k from what I’ve read. You can get it in the U.S. too from your own bone marrow or adipose fat but the cells aren’t expanded(multiplied) like in Panama so the effectiveness may be less and some think cells from yourself when you are sick with autoimmune will not work as well either. Also look into exosomes which are derived from MSCs.
I think it is too early…..
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousI recently had exosomes administered to me via a shot and IV. I have diffused scleroderma I have been on AP for one and a half years. At the one year point I was beginning to plateau even slip back. So my AP doctor suggested the exesomes. I felt great for two weeks and then went into a serious flare. The flare included very difficult breathing and strong heart palpitations. I had not had lung involvement up until this point. My rheumatologist ordered a ct scan and my lungs are scarred and full of inflammation. It’s been six months since the stem cell treatment and I am now on an inhaler everyday and my overall health is very different then before them. I believe the stem cells caused this decline. I would be very cautious!! I agree with Linda it is too early…
That’s disappointing and troubling to hear about the exosomes; I was planning on trying them soon. Do you know what lab they came from? And did you report the adverse event? Did you have a ct scan in the past to compare it to? Hope your situation improves.
I did report my situation to my AP dr. Of course. It was such a severe flare.
He said that the exesomes probably stirred things up and to give it time. The stem cells can continue to work up to a year. I didn’t report the reaction to the lab. Never thought about that.
The Drs office did tell me the name of the lab but I can’t remember to be honest. I will post it next week. Will call and get the name. This was my first ct scan however I had a breathing test in June of 2018 to establish a baseline and it was good. The pulmonologist I am now going to attributes the lung damage to the scleroderma being “out of control” I am continuing with minocycline, LDN, and the Cleo IV.
Hoping we beat it back!Ok interesting. I have heard that they can continue to work for up to year. The exosomes I was looking into getting are from Kimera labs.
I thought this was a pretty good summary of the status of MSCs for RA: https://www.medicalnewstoday.com/articles/325583.php
You must be logged in to reply to this topic.