Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?
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
123 comments
[ 4.0 ms ] story [ 151 ms ] threadOther 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.
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.
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)
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.
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.
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 than the individual generics that are part of the combination; on the other hand, it is a convenience.
Horizon pharma, which markets the drug, is not the cleanest of the bunch either [1,2] .. They have a really good understanding of the healthcare market, and know exactly how to game it.
[1] https://www.bloomberg.com/news/features/2018-04-06/when-thes...
[2] https://www.forbes.com/sites/johnlamattina/2018/03/15/physic...
(edit: added 2nd link)
Having said that, I'm not sure Naproxen is any worse than the Prednisolone (steroid) tablets I'm now on for two months while I wait for the Methotrexate (nasty cytotoxic) to work.
If there's a stem cell treatment on the horizon, I'd love to hear about it.
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.
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 :-/
Otezla inhibits PDE4, an enzyme which regulates pro-inflammatory cytokines, and has the benefit of being an oral medication; one tablet a day. Biologics such as Humira and Stelara are more potent and even more targeted, but need to be injected.
What Otezla and biologics have in common is that they're much more narrowly targeted to the immune pathways of PsA/PsO than older systemic treatments such as prednisolone, methotrexate, cyclosporine, etc.
If your insurance won't cover it (mine wouldn't without trying older ones with way worse potential side effects) the drug company offers a program that only requires a $25 copay.
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 is immediate release esopremazole magnesium with a delayed release naproxen core; the esopremazole is to manage the side effects of the naproxen.
So, kitchen-table Vimovo from OTC supplies is not simple.
Point is, aleve and nexium taken in an equal dose is almost identical to vimovo.
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.
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 you a few samples at the office.
If you can get your doctor to write you a prescription for separate enteric-coated delayed release naproxen and immediate release esomeprazole magnesium, that may be a suitable substitute.
Using the non-generic OTC medicines you (and the blog you cite) name, which would reverse which component has delayed released and use a faster-acting NSAID formulation is definitely not a suitable substitute. (Also, the non-physician writing the blog gets dosages wrong, suggesting 440mg of OTC Aleve—which he claims is naproxen, when it is in fact naproxen sodium—is a substitute for 500mg of base naproxen; if Aleve was naproxen you'd obviously need 500mg, not 440mg, but with naproxen sodium, the equivalent to 500mg of naproxen is 550mg of naproxen sodium, so in addition to magnifying the side effects the drug combo seeks to manage, his recommendation would seem to be underdosing for the intended therapeutic effect.)
And this is why you shouldn't take medical advice from someone whose qualifications for giving such advice seem to be that he is a health economist and former hospital accountant.
That aside, great point and thanks for the great explanation!
[1] https://www.technologynetworks.com/genomics/news/a-crispr-ba...
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?
[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
Invented by Valter Longo, one of the authors of the study referenced in [1].
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.
IMO in order for quality of care to improve across the board, it's important to acknowledge that there is some signal in the noise in situations like this. Overall I think most of us can trust ourselves. Especially if we also have access to medical professionals, many of whom will in practice shrug and say "it's worth a try if you like."
1: https://en.wikipedia.org/wiki/Disinformation
Besides, doctors won't tell you anecdotes from other patients. They will present you with the options to treat your problems. Sometimes there are clear answers how to proceed. But when it is less clear, all they can do is tell you the options, and give you pros/cons, and maybe possible outcomes. You then need to make a decision. And asking other people who have been in the same place can be helpful to that decision-making process.
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 magical cures as they always do, and lo and behold, there are threads suggesting hypnosis and turmeric.
My main concern with this is that the OP may use a completely arbitrary "cure" and avoid speaking further to doctors about it, so any actual treatments that are developed might be overlooked.
Again this is just one person.
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 played along and did my best to truly visualize and imagine what I was told to imagine, and within 2 weeks my psoriasis cleared and has not come back in years. Have not continued with hypnosis either. All prescription medication was short-term. Hypnosis has given me the only lasting relief.
I wasn't sure how effective it would be, but I have intense knee pain every so often at night that won't go away unless I take ibuprofen and wait half an hour. One night I had the knee pain and decided to test the 10 minute script on myself, so I put my headphones on and listened to the teacher recite the script, following along with the visualizations.
Then my knee pain was totally gone. It was a very eerie thing to have this unbearable knee pain disappear entirely without medicine.
Which made me wonder what would happen if I used a similar script and instead of targeting pain, targeted my psoriasis.
I took the original script and rewrote it to focus on my psoriasis, then went to fiver and found a voice-over artist to record the script (so it wouldn't be in my own voice). I stuck my headphones on and began to listen to this script once a day for two weeks.
After the two weeks, my psoriasis cleared up and I haven't struggled with it again since. About 4 years of embarrassing breakouts and flaking skin in public gone in a couple weeks. I had tried topical prescription medicine, pills, all sorts of lotions, scrubs, honey, witch hazel.. you name it, I tried it. Nothing worked until hypnosis for me.
[1] https://thearrowtechnique.com/
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.
In addition, what you are suggesting is that I violate the copyright of the hypntotists I have learned from.
I never claimed that hypnosis was a cure all for everyone in every situation, I was just curious if someone else with auto immune disorder had attempted this path.
Furthermore, I hope you don’t trust me or you or anything you read on the internet at face value. Do your own research always. That doesn’t mean you have the right to go around accusing everyone of being a lying thief.
Worse, if someone else finds your thread and takes the suggestions here without doing proper research.
From the experience of having to go through huge medical situations for my son and younger sister (Both passed away from cancer), a niece with extremely aggressive MS you need more then a few minute conversation with a doctor.
Doctors are amazing and great but you yourself have to be your own expert. Once you start having more then one doctor you need to not make assumptions. Also make sure you have someone else with you at the doctor meetings. I can't tell you how many times someone I trusted caught something we missed or remembered the doctor conversation better then I did.
a) NEVER assume that the doctor remembers every detail or even major issues about your case.
b) NEVER assume that that doctors talk to each other about your case (Because they never do except when it is time to make a decision and someone will always just defer to the other).
Treat each doctor like they are a silo of expertise and that you make sure you ALWAYS communicate what the other doctors have told you. They only have a few minutes so make sure you have things written down and ready to share. Doctor A said this and Doctor B said this .... Pro-Tip - NEVER tell any doctors diagnosis from other doctors unless they specifically ask you. You might lead them in their thinking and they go down the wrong path and miss something.
c) NEVER assume that they know everything. They don't, but they really do try to be the most informed they can be.
So it is okay to have questions about research or treatments they you have learned about. Never make a suggestion or a diagnosis about yourself it puts the doctors into a bad mood or defensive.
d) Find one of the doctors or Nurse Practitioners (these nurses really normally run the whole show in the office on behalf of the doctor) and tell them you need someone to help you if you have a question.
I have found that when things are very serious that someone will have compassion and go the extra mile for you. Because when you or a loved one are sick you can make a lot of emotional decisions that aren't beneficial. Have someone that you can talk things through so you can make sure your thinking through the facts correctly. They don't need to worry about making decision just to help fact check you or correct something medically that you messed up. Just don't over whelm them with multiple of questions limit it to just a few and something that doesn't take a lot of time.
Praying and hoping that something new will cure you soon.
I'd be curious if you can get the clinic in China to expand your own MSCs. I did some MSC research in Beijing long ago. IMO they are ahead of us in many respects, but they also push the envelope more, and you need to be cautious. That goes for everywhere, actually. Just for different reasons.
https://www.ncbi.nlm.nih.gov/pubmed/29273086 https://www.ncbi.nlm.nih.gov/pubmed/30149650
It definitely needs more study.
(Since you didn't mention it) Have you discussed the treatment with your rheumatologist?
Being able to work with your doctors is important, I suggest you look for another.
You're not getting better, you won't ever get better, but you can slow the disease down with medication, exercise and diet, in that order.
We have a very different view on health and medicine. You might be right but I'll never stop trying.
From the site: " This mechanism uses adult autologous stem cells, derived from your own bone marrow. In the procedure, the physician will aspirate these cells from your hip, concentrate them, then deliver them back into your body in the area of damage or injury to aid in natural healing. In all, the process takes less than 45 minutes and the concentration of the cells takes about 12-14 minutes. Because your procedure will utilize a concentrated serum of your own cells, the procedure is considered “autologous point-of-care”. "
Also, you may find articles by Dr. James T Rosenbaum interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/ . I'm not a doctor but experimenting with diet and trying to be good to your gut I have found to be helpful.
I have a whole bunch more thoughts on our disease, but I just want to say it can be rough, I'm sorry you're going through this, and you are not alone friend.
I have been following all the research and advice you mention. I'm absolutely positive that we are only scratching the surface (Dr Ebringer etc). It seems that the link between klebsiella and AS may be on the right path but not a totally accurate diagnosis. Based on sequencing my own biome (i used Viome) and some reading I have done it is more probable that there are a whole host of bacteria that interplay to create an inflammatory reaction. I'm almost certain based on some papers I've read that there is also a corruption in the stem cells that create the immune system white blood cells themselves which would render autologous transfusions useless. This is both exciting and daunting considering the risks of side effects like graft-versus-host disease which sounds truly terrifying. This is why I'm so apprehensive to go for experimental treatment. Life can suck during a flare-up (which I've managed to dampen with diet) but overall it could definitely get and stay worse. Hearing anecdotal evidence of people essentially being in full remission on the other hand has piqued my interest. It truly is a catch-22.
I would be curious to hear more about your thoughts on AS.
I can send a model, Python DNA Plotter, of an Oxford nanopore DNA sequencer(MinION), shows what a Mu DNA plotter simulation may look like.
Students can now learn python programming and DNA sequencing in school, using Mu python to simulate MinION. NMSU is using MinION:https://www.youtube.com/watch?v=9tUtC4rcZ3w
MinION, how it works video:https://www.youtube.com/watch?v=GUb1TZvMWsw Python is the most widely used computer language: https://codewith.mu/ https://codewith.mu/en/tutorials/1.0/plotter A cheap $1K sequencer, MinION, models immune response to immunotherapy? https://blogs.rstudio.com/tensorflow/posts/2018-01-29-dl-for...
Can we then create a cheaper CRISPR test? To cassify AS? Could a CRISPR test correlate immune response to TCR/CRISPR? https://www.youtube.com/watch?v=jAhjPd4uNFY What works best (chemo vs other) per immune response DNA?
See Mammoth Bio CRISPR paper test. https://mammoth.bio/ NCGR has trained NHS/UK in DNA diagnostics in this internship. https://www.youtube.com/watch?v=9tUtC4rcZ3w http://www.nminbre.org/index.php/2018-inbre-summer-internshi... I would study Machine Learning as it is now used for DNA. https://github.com/kjaisingh/high-school-guide-to-machine-le... I used AI/shotgun sequencing on the US Human Genome Project.
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.
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
When I talked about the tradeoffs of this treatment with traditional American physicians they said they are concerned about stem cells multiplying into the wrong thing. They claim they need more studies showing safety and effectiveness.
I'm undecided if I will go this route, mainly because of cost. In the meantime I'm focusing on dialing in my diet (Wahl's protocol has been mentioned here), meditating (hypnosis has been mentioned here), and intermittent fasting (which has been shown to help improve one's own stem cell generation).
https://www.youtube.com/watch?v=v3pK0dccQ38&feature=youtu.be...
http://www.knowthecause.com/index.php/contributor-blog/46-ky...