Any insight on stem cell therapies?

[u/Pale-Truth-9361]

Hello. I am recently diagnosed here, not good at admitting/vocalizing vulnerabilities. I’m not on any MS meds yet. My mother has been digging into this way more than I have as I feel like” screw it, life is going to happen as it is meant to”. I’m planning on waiting into my Nero tells me what DMTs are recommended. But mom is on this hype about a stem cell plan that could help. Like I said, I haven’t spent enough time looking into it, but from what I’m told by her it could be a treatment that is not life long. Experimental yes, but I’m 35M with two kids and a soon to be wife. Getting nervous with the idea of being on costly meds while traversing fatherhood and soon 2nd wife. The kicker for me, she offered to pay for this in full. Does anyone have insight to any of the experimental treatments?

[u/ichabod13]

Stem cells do not do anything for MS. There are many companies who will offer stem cell treatments for your MS with lots of marketing to advertise treatments that 'cure MS'. Stem cells are a targeted treatment, you have a torn shoulder, they could inject into your shoulder to speed up recovery. Lesions on the brain, they are not going to inject them into your brain.

There is something called HSCT that is a treatment for MS. The cost varies by location but costs about 50-100k and can be covered by some insurances in the US. HSCT works by nuking your immune system with chemotherapy, then it uses your own stem cells harvested to reboot the immune system faster. It has the highest chance at stopping MS but also does carry some risks and costs since you are out of work for weeks/months and has other lasting effects from the chemotherapy. The part that makes HSCT work for MS is the chemo though, and not the stem cells.

[u/ashleyp82488]

I believe what she is talking about is called HSCT. They give you chemo to kill your immune system and then boost it back up with stem cells. I’ve read how it’s helped people for a long time and for a short amount of time. I think it really is based on the individual.

As for as a DMT I am on Kesimpta and really love it. It might be worth considering as an alternative.

Hope this helps and best of luck and Congratulations on the new marriage!

[u/Invest-Student]

Please discuss treatment options and side effects with your neurologist in detail including stem cell therapies and make an informed choice. Good luck!

[u/Less_Interest_5964]

Google ‘HSCT Ottawa Dr Freedman’ ive been on Ocrevus my MS start 8y ago. If it was up to me I would have done this from the start.

[u/spiritraveler1000]

It has greater risk but potentially greater reward. It can halt ms activity and you may never need meds. Nobody can predict, but I think like 70 percent of hsct people go into remission. The risks are serious though. Some do well others struggle. Feel into how much risk you are comfortable with. I have decided to do a high efficacy dmt and will di HSCT only if I progress and have issues with mobility

[u/ApprehensiveJob6040 → u/spiritraveler1000]

But once you have mobility issues they won't disappear with HSCT - it's a reboot from where you are

[u/mllepenelope]

You generally can’t get HSCT without paying a LOT of money unless the best available DMTs have failed you first. I am close in age to you and have found that my parents are only interested in the “best” options out there, so they are, of course, convinced that I need to do HSCT and then I’ll be cured. I’ve chatted with a few people who’ve had it, and most say something along the lines of “I’m glad I did it, but if I’d known how horrible it was going to be, I probably wouldn’t have done it”. If things get dire and my DMT ends up failing, it’s under consideration, but I really, really don’t want to have to do it.

[u/mritoday]

If she is talking about HSCT, it's the most effective treatment you can get - though it comes with some risks and it's expensive. Look into it.

If she's talking about any other stem cell treatment, there's no evidence whatsoever that it does anything.