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

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

#61

Post by mnw21cam »

olliej wrote: post #37
mnw21cam wrote: post #34

Earlier quoted context omitted.

Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that,…

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.

Agreed. I think Predisolone is probably a bit better than Prednisone too. Yes, the side-effects of Naproxen were not as bad, but I'm only on Prednisolone for 8 weeks. I wouldn't want it for longer, given how sick it's making me feel right now. Thing is, it is being way more effective on the first dose than Naproxen ever was.

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

#62

Post by hycaria »

Axsuul wrote: post #57
notabee wrote: post #47

Earlier quoted context omitted.

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 cl…

Why did you donate your kidney ?

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

#63

Post by king_panic »

DoreenMichele wrote: post #58
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…

+1 from personal experience using such forums/support groups

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

#64

Post by mdre »

psoriasis_hater wrote: post #22

Have you tried hypnosis? I've suffered from face psoriasis for years. Tried every treatment, every ointment, everything I could think of. It frustrated me that my brain was sending signals to over-produce skin cells on my face. The trick with hypnosis is that you have to be willing to suspend your disbelief with it. If you go in thinking this is B.S. and that you can't be hypnotized, it will not be effective. I playe…

Seconded, please do elaborate on this.

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

#65

Post by king_panic »

People with severe autoimmune conditions have had success treating them with a carnivore diet. I'm not recommending it, just introducing information. Jordan Peterson's daughter suffered severe juvenile arthritis (replacements of ankle/hip before 18th birthday) and is a proponent. Her story is interesting.

https://www.youtube.com/watch?v=wXPqIDx3_DM

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

#66

Post by dragonwriter »

selectodude wrote: post #59
dragonwriter wrote: post #38

Earlier quoted context omitted.

> 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. Po…

> Naproxen sodium is merely a more stable version of naproxen

Every source I can find that discussed the rationale for the development of the sodium salt says it was for more rapid uptake, not stability.

But the fact that Vimovo is an extended release naproxen tablet core and normal Aleve is not is a bigger deal than he naproxen/naproxen sodium distinction.

> As far as nexium, it’s not an extended release tablet

OTC Nexium 24 Hr is a delayed release esopremazole magnesium tablet according to the PDR and every other source. There are other Nexium-branded products (prescription) which are not delayed-release.

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

That might be true of prescription enteric-coated naproxen and immediate release esopremazole; it's not of OTC versions of Aleve and Nexium.

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

#67

Post by pkaye »

olliej wrote: post #37
mnw21cam wrote: post #34

Earlier quoted context omitted.

Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that,…

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.

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

#68

Post by SilkRoadie »

jnnnthnn wrote: post #60

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…

I would like to second this. My father has this condition and he does hydrotherapy every week. Essentially exercises in the water. He has been able to stop taking medication and his quality of life has drastically improved.

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

#69

Post by mongo_lover »

I had Multiple Myeloma and as part of my treatment, I underwent 2 autologous stem cell transplants. The process was pretty grueling and it took a couple of years to get back to my normal self but I certainly believe it was the right decision for me (given the results).

I am not familiar with your specific disease so I cannot speak to how effective this would be for your situation but I would advise, as I am sure you are doing, taking the counsel of a few good doctors with experience treating similar cases and getting their advice. Assuming your disease is anything like Multiple Myeloma, there is probably no consensus on the treatment protocol so you will likely have to go with your gut. What pushed me over the edge to choose transplantation was a discussion I had with another patient who told me her doctor had ascribed her survival (vs the rest of her cohort who had all succumubed) to having taken the most aggressive approach to treatment. I decided that since I was young, strong and in reasonably good health, I should press my advantage and take a similar path.

As another patient said to me, "this is not something you would volunteer for but it is something you can definitely get through". I am happy to talk to you or anyone else that needs more detail on my experience, encouragement or just a listening ear. Just leave a comment below and we can figure out how to connect.

Good luck and Godspeed!

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

#70

Post by Axsuul »

hycaria wrote: post #62
Axsuul wrote: post #57

Earlier quoted context omitted.

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 cl…

Why did you donate your kidney ?

To my father who had chronic kidney disease (Stage 5)
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