Ask HN: Has anyone undergone stem cell treatment for auto-immune disease? • Hacker News Board

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

#81

Post by olliej » Mon, Nov 05, 2018, 11:43 PM UTC

pkaye wrote: post #67

olliej wrote: post #37

Earlier quoted context omitted.

Naproxen is vastly superior to prednisone. The side effects from prednisone are wretched, and long term use is way worse than the impact of naproxen. I was on nsaids for a decade due to poorly constructed skeleton. I only moved off because I became tolerant to them.

Naproxen can restrict blood flow to the kidneys so need to be cautious in the long term.

Yeah, but compared to prednisone it's water :)

The NSAIDs are all remarkably safe, as opposed to steroids, and the non-steroidal non-NSAIDs (wtf thought it was good to make NSAID mean just a specific group??).

I'm on Celebrex, which is much more exciting in its side effect profile, but is still preferable to prednisone :-/

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

#82

Post by quickthrower2 » Mon, Nov 05, 2018, 11:46 PM UTC

isatty wrote: post #23

You should ask a doctor about his opinions (while there are a great many smart people on HN this isn’t the right medium). Worse, if someone else finds your thread and takes the suggestions here without doing proper research.

Unless you can perhaps afford the Mayo Clinic, with a lot of chronic illness you have to be your own doctor and advocate and do your own research.

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

#83

Post by jensvdh » Mon, Nov 05, 2018, 11:52 PM UTC

I also have Ankylosing Spondylitis.

Have you tried all biologics? It took me a long time. But Cimizia has been working wonders for me.

If you live in the Bay Area I would highly recommend visiting the AS Clinic at UCSF.

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

#84

Post by rorykoehler » Tue, Nov 06, 2018, 12:10 AM UTC

88e282102ae2e5b wrote: post #73

gnulinux wrote: post #55

Earlier quoted context omitted.

Equating HN community to "web developers" indicates either trolling or you not being experienced with this community and the quality of discussions around here. Also unsubstantial comments that don't add anything to the discussion aren't welcome here.

That's fair, my generalization was pejorative. I meant to say, in a glib way, that this is not a website frequented by 100% licensed physicians and clinical researchers, and is actually mostly not that. The point is, the OP is essentially saying, "I wish to discard the notion that statistical research is valid and may make medical decisions based on a study with N=1 or 2". I was worried people would show up and offer…

OP here. You are being unkind. I'm not an idiot. I have a doctor. He won't be honest regarding stem cells for legal reasons (they're not fda approved). That said other doctors I know who happen to be experts in stem cells in a totally different medical area have said I should pursue this. HN is one of dozens of avenues I am using to collect information.

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

#85

Post by rorykoehler » Tue, Nov 06, 2018, 12:11 AM UTC

nikolatt wrote: post #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?

No starch or diary diet. No drugs. Lots of exercise. I read about the drugs and they are not something I would feel comfortable putting in my body.

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

#86

Post by rorykoehler » Tue, Nov 06, 2018, 12:13 AM UTC

dmitripopov wrote: post #7

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.

AS support groups in Facebook are heavy on pity and light on solutions. If I want to feel depressed I'll go there.

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

#87

Post by rorykoehler » Tue, Nov 06, 2018, 12:18 AM UTC

bufferoverflow wrote: post #21

My friend did for MS, she had to go to Russia. It was a chemo + stem treatment. Quite successful. Also the people who were getting the same treatment did really well, except one old lady, who died from complications.

Happy for your friend. My brother died from Ms. It's a far far worse disease than AS and if I had it I would have already gone for this treatment no questions asked.

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

#88

Post by rorykoehler » Tue, Nov 06, 2018, 12:20 AM UTC

dfinninger wrote: post #27

I didn't see you mention TNF inhibitors. Have you tried Humira, Simponi, Enbrel, etc? Those took me from bed-ridden with a cane to currently training for a half marathon (over the past 8 years of treatment). (Since you didn't mention it) Have you discussed the treatment with your rheumatologist?

No way I'm risking my health with those class of drugs. All or nothing for me. I do have a rheumatologist but he is not very helpful unfortunately

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

#89

Post by rorykoehler » Tue, Nov 06, 2018, 12:21 AM UTC

newgrad wrote: post #30

My late Dad had that so I checked myself for it. It sounds like there's a golden period (of around 2 years since the first consistent back pain) where the development of the condition can be stopped. Have you passed that period?

18 years now unfortunately. Only just diagnosed though

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

#90

Post by terrycody » Tue, Nov 06, 2018, 12:21 AM UTC

psoriasis_hater wrote: post #75

mdre wrote: post #64

Earlier quoted context omitted.

Seconded, please do elaborate on this.

I don't know if my specific interactions with hypnosis will be of too much insight, but I had been studying hypnosis, taking a few courses on it mainly for the entertainment side of things (making people dance like chickens and such). Then I ran into a course that taught a 10-minute pain relief hypnosis script. [1] I wasn't sure how effective it would be, but I have intense knee pain every so often at night that won'…

very smart promotion, I strongly advice people stop trust what you say, after you put this link here.

Because if you wanna help people, how the hell you put a sth to sell? Why not put the whole script, your paper, your rewrote script down here, for free?

No way man, you are kidding with other people' health, this is shit.