Live data from Hacker News

Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

news.ycombinator.com

1–10 of 124 posts

Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#1
I am asking because I have Ankylosing Spondylitis and it is seriously reducing my quality of life. I have been considering to go for stem cell or similar (NK cell TR cell etc) treatment for 6 months now but am very apprehensive.

There is anecdotal evidence that my condition can be "cured" (at least for 3 years at a time) with stem cell treatment and there are some phase 1, 2 & 3 studies out of China [1][2] (that aim) to back this up. That said I am also aware of the risks and don't want to make a bad situation worse especially considering that I have reduced the conditions negative effects from an 8/10 to 3/10 using diet. Google is practically ineffective for research as it is polluted with companies offering treatment who are heavy on hype and light on evidence.

I'm curious to hear first or second hand experience of stem cell treatment for auto-immune conditions from the HN community. Please let us know about the condition, the treatment, the clinic and the outcome.

[1] https://sci-hub.tw/10.3892/etm.2017.4687 [2] https://clinicaltrials.gov/ct2/show/NCT02809781?term=stem+cell&cond=Ankylosing+Spondylitis&rank=4

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#4
I have AS as well! Sadly, I have not even researched stem cell treatment so I cannot help with your question. But if I may ask one of my own - what diet have you followed that has helped you with your symptoms. Also, are you taking biological drugs like Humira or Enbrel?

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#5
Please call Fred Hutch Cancer Research Center (w/ Univ of Wash & Seattle Cancer Care Alliance) and arrange a consultation. Just see what's what.

I had an allogeneic bone marrow transplant to cure aplastic anemia. 30+ years ago, before they'd isolated stem cells. While methods and tech have greatly improved since, transplants are still an ass kicking.

One common side effect is graft versus host disease. It really, really sucks.

I've known many other patients. One good friend has had two transplants. Pretty much all of us did it as a last resort.

Ankylosing spondylitis sounds terrible. I can't imagine.

As for diet & nutrition, I've gotten great benefit from following Dr Terry Wahls protocol.

Godspeed.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#8

I suppose HN is not a good place to get answers for questions like this. There are plenty of AS support groups on Facebook, people there have more information.

I am a hacker and this is about hacking yourself to get better, so I disagree. (I have AS too)

Moreover, I don't really want to join a health support group on Facebook.

Fellow hackers with AS and autoimmune disorders, shoot me a PM for my nonprofit project about data & collaboration with various health actors ! (Such as biologic producers/ big pharmas)

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#9
My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot.

I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good amount of good research. And since Ankylosing Spondylitis isn't exactly life threatening, it is not worth it.

Currently I take NSAIDs, especially newer medicines like Vimovo https://www.vimovo.com/ helps a lot, but is not something you should take every day. I take it mostly during the long winter months here in Norway, because low temperature makes me really stiff. Chat with your doctor about options here. My mom get tumor necrosis factor-alpha (TNFα) blockers, she says it helps her, but I've said no for now as I don't want to weaken my immune system and I can live with the pain I have now.

Another thing that really helps is regular exercise, you probably already know about it, but you are probably also like me, that just starting with exercise is just difficult. Anyway, you should exercise 3-4 times a week with minimum 30 minutes of sweating. For me it helps a lot when my back is really stiff. And as part of our awesome public health treatment we all get 4 weeks of sick leave annually. Where we travel as group to Turkey / Spain and go through an exercise plan. That is really something that has helped me to still be able to work 100%, You should do something similar even if it cost you money.

Post reply on HN