I caught the tail end of this news item but it appeared to be saying that stem cells from another part of the patient’s body had cured the autoimmune disease Multiple Sclerosis. Following a fairly challenging course of chemotherapy. The treatment is available in London and Sheffield. There has to be hope for other autoimmune diseases like ours.
Stem Cell Treatment cures MS: I caught the tail end... - PMRGCAuk
Just saw it on BBC Breakfast new. There is, indeed, hope.
Jane, we seem to be hearing more and more about work into stem cell treatment with ongoing research - it sounds exciting on many fronts - we live in hope!
I gather it is only expected to work for the relapsing remitting form of MS - but even so, halelujah! It's not an easy year though - same procedure as bone marrow transplants, chemotherapy and a month in total isolation.
It makes me feel optimistic that science is getting closer to understanding this civil war inside us.
I have to say - I'll take pred for PMR compared to stem cell transplant...
Why are you do anti-stem cell transplantation? I've seen you make this comment on a few occasions now and was wondering.
What would you do if you had cancer and it was the only choice you had to live?
Sorry but you sound sad.
For goodness sake read what I say: what I said was "I'll take pred for PMR compared to stem cell transplant". By no stretch of the imagination is PMR in the same league as cancer. It is a relatively mild vasculitis that neither causes significant damage to the body tissues nor is it terminal. It doesn't even shorten life.
If I had an illness for which stem cell transplant treatment had been found to work then I would accept it if it were appropriate for me and offered,
I don't know how much you know abotu stem cell transplant but it is still an extremely hazardous medical procedure. Before you can receive the new stem cells your entire immune system must be destroyed by chemotherapy - which in itself is pretty harsh. There is no guarantee the stem cells will "take" and you could well be left with no immune system.
PMR is a walk in the park in comparison - and would NEVER justify the risks (or costs) of stem cell therapy.
Don't believe all you read on any website that is selling it.
I understand that PMR is not life threatening and that you're okay with that. That's fine.
I have not learned about this procedure from the internet, but have learned from doctors and recipients.
I also understand the way it works and that once your immune system is wiped out from chemo, you are at high risk of catching viruses and bacteria, and yes possible death. Horror story yes. But...it can also work wonders for peoples lives.
Also understand the scarier part of stems cells being rejected. Not taking, however you wish to put it. No one is asking or expecting anyone with PMR to put themselves through this traumatic experience. Again but...there are many people out there that this procedure would and could help. I never said that you personally should do this for PMR, just asked why you were putting it out there in the way that you did, (seemingly putting people off it) when it can be very beneficial.
Everyone considering this procedure should ask a lot of questions to make sure it is the right treatment for that individual before jumping in. Yes they need to know what can go wrong but...they should also know all of the great benefits from using this form of treatment too. Then they can do all of the checks and balances themselves, talk to family, make sure all the support they need is in place and then make an informed decision.
I thank you greatly for this conversation by the way.
The research has been going on for around ten years and has been discussed on this forum a while back. 100 people with the relapsing remitting form of MS were included, it does not seem to work on those with died in the wool MS. Their immune system was killed off using chemotherapy and then brought back to life using stem cells and bone marrow. I think this was over a three year period. The trial was compared against normal drugs for MS and seems to have come up way better. It sounds pretty lethal though.
Yes it does! But for the Grace of etc..........
Stem cell transplant has been used to treat other forms of Vasculitis including Behcets Syndrome and HUVS. Its very much a last ditch effort to treat life threatening disease because of the large risks involved.
In Australia we have a high profile doctor called Dr. Kerrin Phelps. She became head of the AMA for awhile.
She was talking about a patient she had that had an auto-immune disease, but also had cancer which required a bone marrow transplant. After all treatments were finished they discovered the auto-immune disease was gone. She was curious enough that she checked around the world to see if there were any other cases, and there were. They varied from rheumatoid arthritis right through to lupus. There were 8 cases that she could find. That was at least 20yrs ago.
Stem cell treatments have come a long way since scientists first started that conversation.
I sincerely hope the therapy you've found is reliable. There is already a combined chemo and bone marrow transplant treatment being used in Russia for MS patients with really good outcomes.
Sounds like the world is switched on to try and fight these awful auto-immune diseases. Finally. Lori-el
Thank you for articulating the point I was trying to make so well. I am getting more and more impressed with Australian healthcare. My son in law is a primary healthcare doctor in Bellingen NSW and it sounds amazing. I have been to Australia 10 times and if ever I get sick the response has been great - properly interested. Your Pharmacy medicines are better too. I think we put up with a lot because of so called free healthcare. No excuse for the attitudes though.
Wow. My ex has MS but was reclassified to “secondary progressive” from his “relapsing remitting” status, so probably not appropriate for him. But I do like knowing there are new possibilities for patients.
Hi Susan Eleven
I think your ex-husband should check out what they are doing in Russia. Find out what you can and then ask doctors where you live what their status is on those treatments.
We had a case here in Australia where a woman was given the same treatment as in Russia and they treated her with chemo and took her bone marrow and cleaned it but then the ethics committee of that particular hospital decided (in their infinite wisdom) not to transplant the bone marrow back to her. She asked, what am I supposed to do now? They said she'd have to find another hospital to take her. Thank god another hospital saved her.
The treatment is now all these years later starting to be used here again.
I know in Russia it used to cost $35K
The treatment, it has been said, works in approx. 85-90%. It doesn't get rid of everything completely as it depends on what stage you are at but I've seen cases of people going from wheelchair to walking, walking stick to nothing. Some who were treated in the earliest stages nothing advanced. What they are saying is they can stop it in its tracks. Some regain use of body and some stay where they were, but they don't advance in the disease.
I personally, regardless of what type would try anything to stop this disease from progressing and maybe regain some body use again, he'll yeah. Loriel
Personally nothing would persuade me to have stem cell treatment outside my home country. You are looking at a long and complex treatment with a lot of pitfalls. If you have treatment in Russia and return home and something goes wrong - your own medical system may not play ball they way you might like. Nor would I believe everything the Russians claim ...
Whilst the Russian Government may not be trustworthy they have doctors over there who are working very hard for their local patients and international patients.
I have seen patients from Australia and followed their stories and they have all had their own successes with this treatment.
Yes, in any country, there is huge risk when you kill off your immune system and take away your bone marrow. You really do feel horrendous and you feel like you will die, but they give back your cleaned marrow and slowly but surely you pick up.
Yes you can die in the process and they don't sugarcoat that it's a very real possibility. The thing is you can die here from having the chemo and bone marrow transplant to treat cancer too. It's just as risky. I worry when people fear munger as these doctors whether here or abroad are not hiding the risks but patients and doctors alike weigh up the pros and cons and make an informed decision whether to go ahead with treatment or not.
I say good luck to all whether they go ahead or not. Loriel
Hi hubby has secondary progressive there is no treatment available this stem cell will prob be for a selected few also I don’t think you can class this type of ms as polymyalgia no comparison . Ms is the most dibilitating disease out there
I have pmr plus hasimoto which isn’t good but believe me It’s a walk in the park compared to sec pro ms
My grandmother had Multiple Sclerosis too, so I do have first hand experience of its devastating effects. I wasn’t meaning to make a comparison just to highlight that there does seem to be some progress in the understanding of autoimmune diseases.
Coincidentally I have Graves Disease alongside PMR. I am sorry that your family is suffering in this way.
Maybe. For "only" PMR I wouldn't touch a new treatment like this with a ten foot pole. As for MS, there was supposed to be a great treatment a few years ago, one which cleared out arteries in the neck, or something like that. It has recently been shown that this doesn't work. There was a proper research study done. So promises are just that. Still, it's good to see research being done on autoimmune disorders as there appears to be an epidemic of them in the modern world.
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