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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?

#71

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…

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

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

#72

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.

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

#73

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.

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.

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

#74

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,…

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 P…

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

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

#75
post #64

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.

I don't know if my specific interactions with hypnosis will be of too much insight, but I had been studying hypnosis, taking a few courses on it mainly for the entertainment side of things (making people dance like chickens and such). Then I ran into a course that taught a 10-minute pain relief hypnosis script. [1]

I wasn't sure how effective it would be, but I have intense knee pain every so often at night that won'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/

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

#76

Earlier quoted context omitted.

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…

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

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

#77

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 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.

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

#78
post #9

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…

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.

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

#79

Earlier quoted context omitted.

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…

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

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

#80
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.

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