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?

#51

Post by koolba » Mon, Nov 05, 2018, 6:16 PM UTC

dragonwriter wrote: post #46

koolba wrote: post #42

Earlier quoted context omitted.

> 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. If you want to save some money then skip the Vimovo and take generics of the two active ingredients: Aleve (Naproxen) and Nexium (Omeprazole) http://thehealthcareblog.com/blog/2015/11/04/dont-fall-for-t... Only reason I can see to take Vimovo is if your doctor gives yo…

Aleve is naproxen sodium immediate release designed as a fast-acting analgesic, Vimovo uses slower-acting base naproxen in an enteric-coated delayed release tablet as the core around which the immediate release esopremazole magnesium is wrapped. The esopremazole magnesium —as well as he enteric-coating for the naproxen—is a technique to manage the potentially serious side effects of long-term use of naproxen. If you…

I write my comments assuming that anyone that gets legal or medical advice from anonymous commentators on the internet knows the usual "Ask your ________" prior to any of this and so skip the standard disclaimers.

That aside, great point and thanks for the great explanation!

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

#52

Post by dragonwriter » Mon, Nov 05, 2018, 6:26 PM UTC

koolba wrote: post #51

dragonwriter wrote: post #46

Earlier quoted context omitted.

Aleve is naproxen sodium immediate release designed as a fast-acting analgesic, Vimovo uses slower-acting base naproxen in an enteric-coated delayed release tablet as the core around which the immediate release esopremazole magnesium is wrapped. The esopremazole magnesium —as well as he enteric-coating for the naproxen—is a technique to manage the potentially serious side effects of long-term use of naproxen. If you…

I write my comments assuming that anyone that gets legal or medical advice from anonymous commentators on the internet knows the usual " Ask your ________ " prior to any of this and so skip the standard disclaimers. That aside, great point and thanks for the great explanation!

The problem I have (more with the blogger) is that the stuff he overlooks (except the naproxen/naproxen sodium distinction, which I knew from looking it up previously in relation to a relatives prescription) is all stuff I found in less than a half hour of online research on the drugs in question; if you are a policy expert writing about substitutability of goods within the domain of your expertise, especially if in addition to underlying a polciy argument it's something that there is a risk people will act on in a personal health context, it's simply inexcusable to get all that wrong.

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

#53

Post by dmead » Mon, Nov 05, 2018, 6:34 PM UTC

It's been suggested that i might have this as well.

could you talk about what you had to go through for a diagnosis?

Literally every morning is hell. Should i just say fuck it and move to a warm climate?

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

#54

Post by throw343away » Mon, Nov 05, 2018, 6:49 PM UTC

Karlozkiller wrote: post #14

I 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?

Death

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

#55

Post by gnulinux » Mon, Nov 05, 2018, 7:03 PM UTC

88e282102ae2e5b wrote: post #18

I can't help, but I can guarantee you that getting unlicensed medical advice from web developers won't make things better.

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.

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

#56

Post by daegloe » Mon, Nov 05, 2018, 7:06 PM 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?

I don't know about OP, but I have a different autoimmune condition and I've been on a modified autoimmune paleo diet for 3+ years with considerable relief of inflammation/symptoms.

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

#57

Post by Axsuul » Mon, Nov 05, 2018, 7:11 PM UTC

notabee wrote: post #47

Axsuul wrote: post #35

I'm sorry you are suffering from this. Unfortunately, I have nothing to offer about stem cells. Have you tried low-dose naltrexone? Furthermore, have you ever gone to an infectious disease specialist? Many of these autoimmune conditions can be traced back to latent viral infections which can cause one's immune system to go into overdrive, thereby attacking one's own body. I myself went through this experience.

I would like to hear more about resources regarding the latent viral infection theory. I've been helped a bit by low dose naltrexone in the past and I've been reading a bit about things like vagus nerve infections, but if you've been through treatment I'd like to know what your experience was like, if you don't mind.

I've been dealing with Hashimoto's symptoms for more than 5 years now (and possibly Addison's). All my thyroid and adrenal hormones were completely out of whack and I suffered greatly. Went on various combinations of hormone replacement, tried various diets, spent tranches of money on supplements and alternative therapies, and have seen close to about 20 different specialists. Everything I've tried at best gave me clues about my condition but has never brought me anywhere close to normal. I suppose because I was never treating the root cause of it all.

Recently I went to an internist who ran an infectious disease panel on me. HHV-6 came up very high. Since then, I've gone on valganciclovir (Valcyte), an anti-viral that is not FDA-approved yet for treating HHV-6 but has shown promising results from studies[1]. Stanford has also been at the forefront of this research when it comes to treating CFS patients with high titers of HHV-6.

I don't have a success story yet but it's been extremely promising so far. I've only been on this treatment option for a month and my sleep has never been better, it has been moving the needle on some of my most stubborn of symptoms, and I finally feel like I'm making progress.

It also makes sense as a root cause. I donated my kidney about 5 years ago and that's when everything started to go downhill. Even though HHV-6 is a virus that almost every human being on the planet has, my compromised immune system at the time likely allowed the virus to re-activate to become a persistent chronic infection.

I hope this helps. In general, there has been surmounting evidence of viruses behind many chronic diseases. Just the other day there was post on Hacker News linking Alzheimer to the Herpes virus[2].

1. http://hhv-6foundation.org

2. https://news.ycombinator.com/item?id=18265115

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

#58

Post by DoreenMichele » Mon, Nov 05, 2018, 7:14 PM 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.

Most "support groups" for specific medical conditions are awful. They frequently wind up being places you can't actually talk about what's effective lest you offend or hurt the feelings of the sickest and most miserable members who typically are willfully ignorant and broadcast a "Why bother? It won't really help anyway" attitude.

I'm not sure how to find or create a group for really discussing pro active caretaking in the face of a serious medical condition. There seems to be no place that actually gets done. You get that kind of discussion amongst very healthy people -- weight lifters, marathon runners etc -- looking to push for extra performance. You don't get it among people who are supposed to be terribly sick and defying that expectation.

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

#59

Post by selectodude » Mon, Nov 05, 2018, 7:17 PM UTC

dragonwriter wrote: post #38

moh_maya wrote: post #32

Earlier quoted context omitted.

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher tha…

> You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. I don't think you can, specifically: I don't think naproxen (as distinct from naproxen sodium, which has more rapid effect) is available OTC at all, much less in enteric coated delayed-release capsules. Esopremazole is available OTC, but AFAICT only in delayed release form, and not in the same dosage used in Vimovo, which…

Naproxen sodium is merely a more stable version of naproxen. It’s effect and onset are identical. You just need to adjust the dosage. 220mg of Naproxen sodium is the same as 200mg of naproxen. As far as nexium, it’s not an extended release tablet, it just has an effect that lasts for 24 hours as it’s a non-reversible blocker of proton pumps in the stomach and it takes about a day for the body to make more of them.

Point is, aleve and nexium taken in an equal dose is almost identical to vimovo.

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

#60

Post by jnnnthnn » Mon, Nov 05, 2018, 7:23 PM UTC

Anecdotal, and not answering the parent's question, but may be useful to someone, so I'll leave it here. Someone close to me was diagnosed with Ankylosing Spondylitis and found that swimming essentially erased the symptoms.

This person was diagnosed in her 30ies. Her GP suggested that, along with maintaining a good diet, she learn proper swimming technique and start swimming daily. She has been swimming daily for the last 40 years and has essentially not suffered from any symptoms for decades, except when she's had to take breaks due to either travelling or other health reasons.

Obviously, no A/B testing was done here, and I do not know how this could translate to someone else. But maybe, just maybe, it could help someone reading this?

Also, swimming is a rather pleasant form of exercise in my experience (though I do not suffer from AS). So assuming there are no counter-indications, folks may want to give it a try!