My wife had HSCT to treat MS a year and a half ago. So far some symptoms went away, others stayed, but most importantly she hasn't got worse. Fingers crossed it will stay that way.
Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
11–20 of 124 posts
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#12I 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?
Any idea what Humira costs with an "average" insurance in the US?
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#13I 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.
Facebook is the last place I'd go to ask health questions of any sort. In record time I'd find every advertisement on the web would be advertising doctors and herbal treatments and medicine and what have you. Not to mention, the botspam accounts and general "low effort/content responses" I'd have to filter through.
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#14I never heard of stem cell treatment for auto-immune diseases at all. Got two conditions myself, I would not go for such a 'radical' treatment at this point though as I do not feel I suffer enough to try it out.
I will read up on it though.
But for know I'll just ask a question. What are the actual risks of stem cell treatment?
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#15There are early evidence from USC medical school that fasting regenerates new immune cells from stem cells [0] and some early evidence that it can reduce the impact of some autoimmune diseases like MS [1].
[0] https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4899145/
edit: typo and clarity
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#16I 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?
Any idea what Humira costs with an "average" insurance in the US?
With 60% specialty copay its something around 3,000 I month I think. If you become part of their ambassador program they may offer to cover up to ~$16k of those costs per year. Doing that also requires some assistance from the health insurance program to cover it all in a certain way before Humira will cover anything. Took a lot of calls.
Other things I'd recommend: Dedicated medical fridge with internal temp monitors, remote infrared temp gauge to measure package on arrival.
Figures may be a tiny bit off here, going from memory.
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#17Out of curiosity, have you tried a daily supplement of turmeric? It takes a few weeks but it appears to have a good effect of helping keeping the immune system healthy (https://scholar.google.com/scholar?q=turmeric+inflammation+s...). It helps me maintain some resilience even when I go off diet for my condition and generally helps "detrigger" my inflammation.
Now to the question in point. What comes to my mind for fellow "hackers" is how to test / quantify test the results of any such treatment. Does it only work for ~3 months before effects begin to wane? Before doing any such treatment I'd personally want to know and have collected a decent amount of personal information including specific blood cell counts, CRC, various interleukins, on a daily basis. Which alas is almost impossible for a person of normal means currently. I know a few people who've done stem cell treatment for knee / soft tissue injuries and they indicated it helped. That was from a stateside company.
My take would be to keep studying it and with the momentum in the research area to wait a year or two before seriously considering it. Hopefully some of the "quackery" in the field will be shaken out. Of course, IANAD, but I also believe each patient should be involved in their long term care and become as informed as possible.
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#18I can't help, but I can guarantee you that getting unlicensed medical advice from web developers won't make things better.
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#19I 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?
Any idea what Humira costs with an "average" insurance in the US?
There's a prescription discount plan - takes that $2k/mo cost down to $5.00/mo on good insurance plans.
Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
#20There is a person saying they dramatically reduced their pain eating the carnivore diet at meatheals.com with this condition.
Again this is just one person.