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

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

165 pointsrorykoehler119 comments

I am asking because I have Ankylosing Spondylitis and it is seriously reducing my quality of life. I have been considering to go for stem cell or similar (NK cell TR cell etc) treatment for 6 months now but am very apprehensive.

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

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My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot.

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.

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 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)

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, 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.

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.

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 :-/

Has your doctor talked about Otezla (aprimelast) or biologics?

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.

Thanks for the info. It looks like I only get Otezla if Methotrexate fails to work, or I pay a lot.

You may want to look into Taltz. It has really helped me, and practically no side effects aside from some injection site reactions.

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.

> 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 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.

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.

> 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.

I also have AS and started with NSAIDs, and would advise you be very careful with your stomach. I was taking indomethacin that made the stiffness slightly manageable but acid reflux symptoms became a serious issue. After switching to Humira I have no more active pain or stiffness, with only some minor uveitis (in an eye that has many other issues). I wish someone would warned me earlier because my stomach has never been the same. Unable to even drink tea at the moment because of my reflux issues. Also to note, I have had zero issues with my immune system and I have been using it for about 5 years and through 3 eye surgeries.

I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.

I am glad to hear that exercise and diet works well for you, but there are some of us that aren't so lucky. I have been through four different rheumatologists, and plenty of non-drug related therapy attempts. I even consider myself lucky that Humira has been so helpful.

I can totally understand your choices though I think we can both agree that the current drug choices are very primitive due to their systemic efficacy. There are some interesting mouse studies that are investigating methods of targeted secretion of biologic drugs using CRISPR (modified viruses?) at the site of inflammation [1]. I'm hoping these progress to human trials soon.

[1] https://www.technologynetworks.com/genomics/news/a-crispr-ba...

> 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 you a few samples at the office.

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 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.

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.

I exercise. Actually AS makes it so I exercise less than I would like to. I love exercising and was competitive at an international level as a teenager. I won't take TNFα's. Seems to be worse for my body than the disease. I'm more interested in positive sum treatments.

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!

I agree completely. Diet and low impact exercise/stretching are the big ones.

I was diagnosed with AS as a teenager and recall spending months at a time on crutches with swollen ankles and knees (having a fluid drained and replaced with cortisone injections), at times it affected my finger joints, and in my twenties and early thirties my lower back. Throughout most of these years, particularly early on, Naprosyn was my goto solution.

Up until about 2 years ago, I couldn't imagine getting a solid night sleep without some kind of lower back pain waking me, and putting my socks/shoes on of a morning generally involved sitting or laying on a bed and straining to pull my feet up to reach them.

I'm not big on swimming, but in the past couple of years have taken up regular Yoga and this has had huge benefits for my lower back (and state of mind).

Even more fundamental to this, I believe is my change of diet. Over the past couple of years I've (gradually) reduced my sugar, dairy and meat intake and adopted a more planted based diet. I didn't dive in at the deep end, but I'm now at the put where the only dairy I now indulge in is the occasional cheese, I eat virtually no red or processed meats, might eat chicken/fish once a week at most, and sooth my sweet tongue naturally with fruits, honey, etc.

My lower back hasn't bothered me for about 18 months, I can now put my socks on while standing and I rarely, if ever, suffer joint pain elsewhere. I feel more energetic, have taken up running (ran my first 5k recently) which is something I always thought would be something beyond my reach.

I don't like to preach or say any one particular thing (if anything) is going to change your particular situation. I can only say the improvement in my quality of life over the past couple of years has been significant since changing my diet and introducing some regular movement.

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.

I exercise (cycling) minimum 3*1+ hour a week. Usually more. Not much of a swimmer though I do it sometimes. Haven't noticed it to provide any added benefit over other types of sports. Exercise is definitely part of any effective treatment program.

The trial you linked (as well as the two other registered trials using mesenchymal stem cells for Ankylosing Spondylitis that I found) are using allogeneic (donor) MSCs. I've been in MSC research/development for 17 years and now cryopreserve them as a service (Forever Labs YCS17). From my experience and knowledge of clinical efforts, allogeneic is limited by immuno-rejection of the MSCs after a few days. That's not to say that they can't provide benefit, but just that their window of action is limited as your body recognizes the donor cells as foreign, and weeds them out (perhaps in AS this is enough). The allogeneic issue is actually why I started banking them. I wanted my own young MSCs available to me later in life.

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.

Do you have any links to studies re immuno-rejection? I've heard it mentioned but I've also heard the opposite from the likes of the stem cell clinic in Panama.

Sure.

https://www.ncbi.nlm.nih.gov/pubmed/29273086 https://www.ncbi.nlm.nih.gov/pubmed/30149650

It definitely needs more study.

Thanks. I find it curious as Neil Riordan from the Stem Cell Clinic in Panama says the exact opposite (I think in this video but I haven't had time to find it https://www.youtube.com/watch?v=cLKOddCPs9I). I can't make up my mind if he's a huckster or not. Based on my investigation through my network (3 degrees of separation) he seems to be legit but of course that is difficult to confirm.

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.

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.

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.

Depends on the specialty copay. My Simponi is $30/mo after insurance and it's been that way through multiple jobs.

There's a prescription discount plan - takes that $2k/mo cost down to $5.00/mo on good insurance plans.

I don't think my insurance would count as "average" but for another reference point I pay $20/mo and the opus copay assistance brings it to $5.

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

It can absolutely make things better. I have received lots of good medical advice in this way, with the philosophy that asking alone can't hurt. However I have also weighed the advice as to possible risk. In addition I've tried lots of things that didn't work for me, like diets, sleep patterns, and even some medications.

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."

It can also make things actively worse - it's not just additional information, but potentially disinformation.

"Disinformation" typically means something intended to mislead[1], as opposed to "misinformation" which is merely wrong, not intentionally malicious. I doubt anyone here is intentionally trying to harm others with their advice...

1: https://en.wikipedia.org/wiki/Disinformation

Yeah, so: Research it, ask professionals about it, weigh the risks, and come to a decision, or don't. It's not like we're just computers who run every piece of input as a command with root privileges. We can engage and use a healthy, non-black-and-white filtering system.

They've asked for help in narrowing a field of information before they explore further. They're not asking for a final direction that they will blindly take.

We're a fairly clever group here, with diverse knowledge. Which means I trust that people asking for advice here realize the need to balance anything posted here with asking a doctor.

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.

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 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.

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.

You definitely didn't help with this broad pessimism and hopelessness.

Please call Fred Hutch Cancer Research Center (w/ Univ of Wash & Seattle Cancer Care Alliance) and arrange a consultation. Just see what's what.

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.

There 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

Feel like I should also mention ProLon FMD: https://prolonfmd.com/fasting-mimicking-diet/

Invented by Valter Longo, one of the authors of the study referenced in [1].

I have Ankylosing Spondylitis with peripheral manifestations in knee, elbow. I did an autologous stem cell injection into my peripheral joints with no effect.

Do you know what protocol for cell preparation and administration was followed?

Not in technical terms, but the doctor was head of hip arthroscopy at NYU Langone and an associate prof of medicine at NYU. Very legitimate doctor (I really liked him and think he is a great doctor) and facility in NYC. They never made any false promises to me whatsoever and were transparent about the whole process.

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”. "

Now I see that you're OP and looking through the comments, I just want to say I feel for you. I am 26, when I was in high school I was highly active with a lot of exercise. Due to the peripheral manifestations of my AS I can't really exercise much any more without inflaming my arm or my knee. I think some other posters here raise great points about diet and exercise (There's been a lot of talk about starch and AS, see kickas.org, google Specific-carbohydrate diet, look up the work of dr. Alan Ebringer from King's college london).

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.

Thanks for you kind words and support. I'm sorry you have to share this experience too. I know there are many people suffering all sorts of ailments, many much much worse than AS which I remind myself of when I'm down. That said I don't need to tell you how frustrating this can be. The hope of a cure sustains my generally positive outlook on life. I hope for all of us that we make massive leaps in understanding our immune system and genetic makeup better in the coming years.

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 have other autoimmune disorders and I've looked into getting stem cell treatments outside the U.S because of limitations of what American doctors are willing to do. I found a center in Panama with American trained physicians where you pay out of pocket for treatment (~$25k+ for a week of treatment of umbilical cord stem cells). https://www.cellmedicine.com/ You can apply for treatment on their website and if the doctors believe they can help they will let you know.

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).

You may find this interesting, too:

https://www.youtube.com/watch?v=v3pK0dccQ38&feature=youtu.be...

My official diagnosis is atypical cystic fibrosis. I manage it with diet and lifestyle. I'm off all medication.

You say you have seen big improvement with diet. Let me echo what others here are saying: If you aren't getting regular, gentle exercise (walking, hydrotherapy), try adding exercise to your regimen before seeking more drastic measures, like stem cell treatment.

The lymphatic system is powered in part by exercise. It is how the body removes wastes from the tissues.

I spent several years doing a great deal of walking, often several hours a day. It took a long time to get better, but I have seen much more dramatic improvement than I ever expected.

Diet is a major aspect of managing my condition, but walking plays a really critical role. If you aren't exercising regularly, you are actively denying your body the opportunity to take out the trash. This isn't good for anyone. It's worse if you have a chronic condition.

As I mentioned elsewhere I get plenty of exercise. I would get more but I'm somewhat limited by AS. If I spent 6 hours on the bike I get very inflamed the week after. There seems to be a sweet spot of about an hour a day for exercise unfortunately.

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.

I am a hacker and this is about hacking yourself to get better, so I disagree. (I have AS too)

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)

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.

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.

+1 from personal experience using such forums/support groups

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

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.

I feel I have to say here that I heard from a colleague of a group of people who recieved stem-cell treatments also there, and they all got cancer. Second-hand anecdote but there you are.

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.

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!

Another adjuvant therapy to consider is the 3-5 day fast or fasting mimicking diet. https://www.foundmyfitness.com/episodes/valter-longo-2

Essentially, during the fast, the body cannibalizes a significant percentage 30%? (IIRC) of immune cells. Once the fast completes, the refeeding cycle regenerates brand new cells from stem cells which results in resetting auto-immune symptoms.

For serious cases of necessary therapy, they do this on a 25 day (normal) /5 (fast) cycle.

Reviews say that the book that Dr Valter Longo promotes is a big ad for his fasting-mimicking diet kit, but they have a brief screen shot of the fasting-mimicking diet protocol which is:

  day 1 - 1100 calories (11/46/43% protein/fat/carb)
  day 2-5 - 720 calories (9/44/47% protein/fat/carb) macronutrient breakdown.

This works out to: day 1 - 30g protein, 56g fat, 118g carb day 2-5 - 16g protein, 35g fat, 85g carb

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

Biologics are amazing, without them I'm almost immobile and in constant pain.

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.

>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.

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 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.

Could you please elaborate more on this hypnosis?

Seconded, please do elaborate on this.

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

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.

That's great news. My bro had MS. It's much more serious than AS. As I am intimately familiar with MS by proxy I'm curious which aspects improved and which ones didn't?

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.

I'm considering it. I have Myasthenia Gravis. Infusions are covered by insurance and are helping maintain a good quality of life. But it would be nice to be cured.

Out 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.

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

Thanks for this. I also have HHV-6 outbreaks on occasion. I will definitely investigate further. I have reached out to my rheumatologist for an infectious disease specialist referral. I'm curious how did you find yours? Are their specific terms I should google apart from infectious disease specialist?

What was a high titer for you? I actually ordered myself an HHV-6 test and mine was around 16 or so. Also, your story is so familiar. So many attempted treatments and doctors. It's very difficult to find a legitimate doctor on the forefront of therapies like this that isn't a dangerous quack.

Why did you donate your kidney ?

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

I don't know about stem cell treatments but for anyone with an auto-immune condition I would recommend trying the AIP diet. It was a game changer for me and my health improved rather fast after starting it. Anecdotally I've heard an adult stomach heals in around two years so I'm sticking to a strict AIP diet for at least that long before adding in other foods.

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?

Look up Graft-versus-host disease https://www.wikiwand.com/en/Graft-versus-host_disease

Death

Hi. I have AS and went from 9.5/10 to 0.1/10 with diet. Why not just continue with the diet? It has zero negative side effects and is free. Would love to learn what you have done to change your diet. Maybe I can help you with the final tweaks.

Btw I don't check this comment board often -- if you want to get in touch send me a DM on instagram @wanderlustandcompass But rest assured that there is light at the end of the tunnel. I never thought I'd be able to walk without pain again. Now I run 10k a week and do weights at the gym and even do kungfu. Stay motivated and I'm sure you will get better :)

Would you mind detailing your diet changes?

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

I've had some experience with Humira for my Psoreasis. I have been able to be off the meds for almost 5 years, after around 9 months on it, due to work circumstances, that made it impossible for the self-injections.

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?

Go to get a test for hla-b27 gene and inflammation makers at a hospital. Try get a referral to a rheumatologist. They will do the tests and also send you for xray of critical joints that are affected.

There 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.

Jordan Peterson, a popular professor, and his daughter are following a carnivore diet with self reported good results. Doctors generally do not recommend this diet but it seems to be reducing autoimmune issues for a small group of people. There is speculation that this diet could be working not only because of the elimination of the offending foods, but because of caloric restriction, which has been shown to have good effects on several health conditions.

5 Natural Approaches To An Autoimmune Disease

http://www.knowthecause.com/index.php/contributor-blog/46-ky...

Many new immune system tools are being developed. MinION is now used for T-Cell and B-Cell characterization by reading immune response to breast cancer. Can you create a AS model? https://www.biorxiv.org/content/biorxiv/early/2018/09/24/424...

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.

Thanks for all the links and info. I will spend some time exploring them. Much appreciated

I had never heard of AS but for what it's worth I think that we are all facing a host of 21st century autoimmune diseases that may be caused (in part) by our diet and environmental factors.

Although my situation in no way compares to yours, I think I may have a condition called leaky gut after a lifetime of eating legumes, nightshades and specifically proteins like gluten which are part of the lectin family (or something along those lines - I'm not a doctor). Also beer, lots of beer, which certainly didn't help. It may be exacerbated by molecules in genetically modified foods that normally don't appear in our diet, and by pesticides/herbicides like glyphosate that wreak havoc on our gut flora. These are present in large quantities in processed foods high in soy and corn, especially fast food. IMHO this is why so many young people are getting type II diabetes and obesity.

I just did a quick search for the overlap between our conditions and stumbled onto this page:

http://stopautoimmunity.com/en/2016/11/20/ankylosing-spondyl...

I highly recommend glutamine. It repairs the single-cell lining of the intestine to prevent microbes from crossing over into the body cavity. In my case I've been suffering from acne for the last couple of years (I'm 41), severe fatigue and joint pain from heavy gym sessions. I've only taken glutamine a couple of days and my acne has begun clearing up.

I'm wondering if autoimmune diseases (like arthritis) might be caused in part by our immune systems constantly fighting microbes anywhere our cells have contact with the outside world, so for example mucus membranes, our digestive tracts and our joints. Any supplement that strengthens those like glucosamine/chondroitin MIGHT have a therapeutic effect on these conditions.

Also CBD oil can work for inflammation, but you might want to wait until you're older to try it as the last thing you need at your age is dependency on a mood-altering substance. Also there has been little literature about the longterm benefits or side effects of it as it has been illegal in the US for so long. I really view it as a remedy for older folks.

If it was me, I would try holistic/lifestyle changes such as avoiding foods that cause inflammation, staying away from opioids, strengthening bone and connective tissue (see people like Mike O'Hearn's videos on YouTube), etc etc before trying an experimental treatment like stem cell therapy. Just remember that western medicine can be out of touch when it comes to complex systems and holistic effects. But, I am optimistic that great progress within these large search spaces will happen in the next 5-10 years from advances in AI and having big data to train on, if you can maintain your health until then. It sounds like you are on the right path with your diet. Best of luck to you!

I am convinced that we will discover many auto-immune diseases are the same disease manifesting in different ways due to environmental factors.

I have researched all the aspects you mention thoroughly already and I can't agree more with your closing paragraph. Spot on!

Any experiences with stem cell treatments for nerve injuries?

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.

When searching use site:.edu for medical 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.

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.

Hi, I know this isn't what you're asking for but after reading that it's "seriously reducing my quality of life." I would suggest you read "The Divided Mind" by Dr. John Sarno.

It's just a book and maybe it can help you get better fast ( you can even find the pdf on Google too I'm sure if you aren't ready to spend anything). The best part is reading the book alone can help restore the quality of your life as long as you keep an open mind. I didn't suffer from the same condition as you but I've been in a similar situation and this book changed my life (and another HNer who I recommend it too).

Also if you're suffering from back pain please also lookup "Healing back pain" by the same author.

Sorry for the unsolicited advice but I'm just trying to be helpful having been in a similar situation once. Try it before going for something so radical first. The only thing you have to lose is spending some time reading the book.

Since I can't edit my original comment I'll just add that people have had a lot of relief from ankylosis spondylitis using these books [1], [2].

Yes it may not cure you fully but it may help you to regain your quality of life like it happened for me or this HNer [3] and thousands of others who thought the had some incurable illness but healed themselves after just reading a simple book.

[1] https://zacalstin.com/2017/06/30/how-i-overcame-ankylosing-s...

[2] http://www.tmswiki.org/forum/threads/big-improvements-in-ank...

[3] https://news.ycombinator.com/item?id=18151061

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