I had a Stem cell treatment

Hello healingwell. I haven't posted here in a very long time, but I've come back to share some recent news.
I had a stem cell therapy done in Panama for my ulcerative colitis, 2 and a half months later and I am on no medication.
I've been dealing with colitis for 5 years, and the only thing that could keep me in "Remission" was prednisone, at one point I was taking it for over a year, which I know messed up my body a lot, but I had already missed a whole year of school.. It was a desperate choice to make.
On the first day I had blood taken, day two I had 2 IV injections of expanded allogenic mesenchymal stem cells, day three i had one IV, and day 4, the last dose, one IV. In total it was 80 million stem cells.

It's amazing how much better I feel, I haven't had a normal day in my life for 5 years, but now I feel like I'm being able to return to my daily life. Before this treatment I was on entyvio (which didn't help me) and sulfasalazine (6 tablets) I've gone through many biologic medications to no avail, or very little help to me. Just thought I would share my story. If anyone has any questions I'd be more than happy to answer them.

Wow. So happy for you.

Does anyone know when stem cell therapiesfor UC will be available in US? Or do we have to fly to Panama?
Have any other counties approved this (just wanting to know how rigorous the testing has been for approval).

OMG a cure for UC!!! I wonder if they can grow a new colon with stem cells? :) I wish I would have known and or wish this was a viable option in the USA. Figures with my luck the year I give in and have my colon removed they will come out with some ground breaking cure... Please keep us posted on how you are doing - Congrats and hope you stay in remission...

expanded allogenic MSC stem cells seem to hone in on gut and regulate immune system - they do not regrow colon's. Maybe regrow/repair immune system. How they "regulate" is not well understood, nor how long treatment will last.


the therapy is one of the 4 or 5 stem cell therapy approaches reviewed last year:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4369491/

"MSCs seem to be a promising therapeutic strategy for IBD because of their ability to selectively home in to injury/inflammation areas after systemic administration, and their immunosuppressive and tissue healing properties[30,31]. However, the clinical data published about MSCs transplantation in IBD patients showed conflicting results. An explanation for these inconsistent results could be the different sources used to obtain the MSCs that could have distinct differentiation and regeneration capabilities and the variety of protocols used for their isolation and culture. A better understanding of the MSCs biology and mechanisms of action and the exploration of other sources of stem cells in preclinical models of IBD are necessary."

"Experience in UC is even smaller, and was mainly obtained in Russian studies about response of clinical activity[50], changes in the pattern of systemic cytokines[51] and elimination of cytomegalovirus after Mesenchymal stem cell transplantation (MSCT)[52]. The most important work in this field is a phase III study[48] that plans to include 330 patients who will be treated with MSCs at different doses, but final results are not expected until 2018. "

"It is obvious that MSCs are a promising tool in the treatment of IBD. However, a large amount of work remains to be done to understand the mechanisms through which MSCs regulate the immune system, homeostasis and tissue repair."

colitis91895 said...
@iPoop the treatment cost $18,000 but I know it varies where you go the cost might be different. I know in other places it costs less, but we decided to go to panama because we actually have family friends who went there for other medical conditions with promising results.

My shot of Stellara costs my insurance exactly $18,000 and it's not nearly as effective and I need it every 2 months.

I'm worried about the rogue reaction to the Stem Cells where they don't do as expected and cause something else to be set off or grow. I'd be one of the first ones to line up for it after the clinical trials are concluded in the US and approved by the FDA. This is all very promising and rapidly advancing. I'm very happy that it is working for you.

Congratulations and hope that this stem cell therapy works out for you in the long term. I don't know much about stem cell research but I am very excited for you. Resetting the immune system may be the key for some IBD sufferers!

NiceCupOfTea said...

colitis91895 said...
If this has any relevance; the family friend we knew had autism and he had to go for more than one treatment but he did start noticing improvement after the first. Depends on the condition, and severity.

Wut? He had this treatment for autism, or something else?

That reminded me of a 60 minutes piece on Stem Cell and some of unethical people scamming people. I'm not saying that Colitis91895 is being scammed or either is there family friend but some people have been.

www.cbsnews.com/news/stem-cell-fraud-a-60-minutes-investigation-09-01-2012/

I just read on the german news that they can reboot the immune system for MS and called it a "cure". I'm sure this can be done for UC. I'm glad you're finally better.

Who knows....maybe this will be standard treatment for the future. (Way in the future). It's definitely interesting. Lots for them to learn about yet.

Hope you continue your remission indefinitely!

NiceCupOfTea said...

colitis91895 said...
If this has any relevance; the family friend we knew had autism and he had to go for more than one treatment but he did start noticing improvement after the first. Depends on the condition, and severity.

Wut? He had this treatment for autism, or something else?

Yes. Autism. They have treatments for multiple conditions. Autism is one of them.

iPoop said...
I think it's premature to call any treatment a true cure. We just don't have enough evidence and long term data yet to make that claim. Stem cells are certainly healers and repair tissue damage. Whether they reset the immune system's attack, I'm quite skeptical. I think cure, like other 4-letter-words, shouldn't be used often haha.

Perhaps "resetting" is a bit of a strong term to use. I'll just copy what it says from the site of the institute, in their own words. "Among many other things, mesenchymal stem cells from the umbilical cord tissue are known to help reduce inflammation, modulate the immune system and secrete factors that help the central nervous system to regenerate."

Also I'll keep everyone updated as to how I'm feeling in the future. But I have high hopes.

Hope you stay well!

I've seen a couple of TV documentaries about stem cell treatment. One for Crohn's - which helped the person a lot and one about MS where people made amazing improvements. However, in both cases they wiped out the person's immune system first which is dangerous, meant isolation and slow recovery. Sounds like this treatment doesn't first wipe out the immune system?

I've seen the advertising for the clinic in the Ukraine in the past. They do a lot of controversial private med stuff there. I was flying back from there once next to a lady on the plane who had had treatment to get pregnant there, she looked well past menopausal age.

colitis91895 said...
@notsosicklygirl, all I can say is they're not allowed to use the word "cure" but the fact I'm not taking any medication feels like a cure to me.

Some people on remicade have a similar situation. they are "cured" until their next infusion. It's still a treatment. whatever you call it, and however long it works, it sounds like it's very hopeful. I am happy you're doing so well. Please continue to update us.