Stem Cells Versus DMTs: MS Treatments Go Head to Head

Thank You Ed,
I 100% agree with you. I don't see how people with Secondary and Primary would not benefit by being included in the trial. I know that it is more difficult to monitor their MS progression, but I feel strongly that they have been neglected for too long and should not be left out. There must be some way of including them too.
NS

We have waited long enough, why is the FDA so slow in approving stem cells for MS
when other countries are doing stem cell transplants, it is cruel!!

Yes Ed, I was a bit saddened to be eliminated from this, but then again at this point I doubt that much of my damage will be reversed.

This is a very dangerous procedure, killing the immune system; but I would still sign up in a heartbeat! From what I understand when this has been done in other countries the long term success rate has not been all that high; but a six year test span is still very conservative. Still, they are learning all the time. Perhaps if results show significant improvement at, say, three years they may approve it sooner.

A concentrated effort in the US would be very interesting. If it proves successful I wonder how negativity it would effect all the drug companies? They would sure hate to loose their cash cows. Would they stop developing new drugs? Something to think about.

Ed and NS,

Thank you, both of you for thinking about the rest of the MS community. Any form of MS is ugly, but as someone with PPMS and "older" -over 55, I feel like the proverbial red headed stepchild-left out of everything.

Wouldn't it be great if we could "grow out" of MS by simply getting older?

Six years is a lifetime. Why not data mine the records of the folks that have already done this? That information could shorten the six year follow up.

Regardless, Ed, thank you for the article. This is great news.

How do I register? I have secondary progressive multiple Sclerosis

Hi Ed, I agree this is long overdue, I'm 58 years old and SPMS. The only options I have to try and halt my MS progression is an overseas visit to Moscow or Mexico. This is my only hope. This study will benefit those earlier in the MS journey and I hope it proves to the industry that this is indeed a credible treatment it will have a huge impact on people's lives.

Ed,
Thank you for this article. I am currently in Puebla Mexico receiving treatment at Clinic Ruiz and initially it wasn’t an easy decision. 17 years with this MonSter and have tried many DMTs, when I was ready to submit application for Dr. Burt’s clinical trial at Northwestern University he had decided to go on sabbatical to teach and speak about HSCT treatment for Autoimmune diseases. My neurologist offered 3 options, as he felt I was no longer RRMS but SPMS, tysabri (already failed), ocrevus, or lemtrada. I researched and pursued HSCT in Puebla and wrapping up my 2nd week I can’t say enough about the treatment. Harvested 1.2 billion stem cells yesterday!! Last day of chemo is today and will receive my stem cell transplant tomorrow. Came here knowing this is not set up for repair my goal was to stop progression. I’m no medical expert just living with this everyday and trying to hang around as an active participant as I can be for my hubby and 9 yr old daughter and almost 7yr old son. I live in the DMV area and will be happy to keep you posted on the rollercoaster I will be facing returning home as an immunocompromised person for the next couple years. I know the treatment is only the beginning and am getting my hematologist lined up to follow me when I return home Feb 2nd. Thanks again

As usual NOT available for people with PPMS! Don’t these people realise that this treatment can work for PPMS suffers, some of who are currently being offered NO treatment options in the UK? When is someone going to stand up and fight for these people who are not being helped at all and for whom time is against?!

I had stem cell therapy in Chicago about 4 years ago. I believe that they would help MS people extremely. I had two treatments in two years. They did not give me chemo therapy. They took my fat cells from my stomach and turned them into stem cells and injected them into my spinal cord. The first treatment really helped me. My walking got better to the point I could walk with a cane not a walker. My fatigue improved. I use to get out of bed in the am and could hardly walk to the kitchen without fatigue. After stem cells that improved. My second treatment helped also. I feel like it still is helping and my last treatment was 2 years ago. Then the government stopped DR's from doing this. It is so sad that the government can stop things that are helping people. I wish I knew how to start a protest so that people can benefit from modern science. SO SAD!

One other thing, we say the drug companies will try to sabotage this treatment because of sales of DMT. But, this therapy does not cure MS just hopefully lessens our disabilities, we will still medication to keep it from progressing.

Didn't Dr. Burt's clinical trials compare DMTs to aHSCT? Why are those results not considered?

Hi Ed,
Another great article, thank you.
I have PPMS and feel as most of us with SPMS & PPMS, left out of something that (as you mention in you column) would also be beneficial for SPMS & PPMS.
Certainly hoping that sometime soon there will be a trial conducted using aHSCT for us with SPMS & PPMS.
Thanks again Ed!
Regards,

Good thing they do this trial, but it will take many years before we see conclusions, followed by many years before its common practice. For aggressive RRMS, aHSCT is so effective (stops RRMS in around 80% of cases), this should be available for each patient with aggressive RRMS where 1 or 2 second line DMT's have failed!
"The participants, who won’t know which treatment they’re receiving, will be followed for six years". I've seen my daughter have both DMT treatment and later aHSCT, I am 100% sure every patient will know the difference between the two as soon as treatment starts.
aHSCT is a great treatment for very aggressive RRMS, my daughter and many others I know have MS stopped and even experience improvements (because it stops the active leasions, NOT because of damage/myelin repair, that is not possible yet)

It does zero good to remove a MS patient’s own stem cells and then put them back in, stem cells need to be from another source, clean, new, non-diseased if really want to see stem cells work and only reason US is lagging is the big Pharma control over FDA

Good to see this news. Have always been very sorry that neuros continue to prescribe injectables as first-line treatments. Not blaming the doctors, of course, but drug companies should not be allowed to push products that should in general be pulled. Maybe we can go back to steam engines, too, and the Pony Express.

Then there’s Canada with the highest rate of MS and nothing to offer in terms of research and solution, makes me sick

This is definitely long overdue, I was diagnosed with aggressive RRMS in 2015. I chose not to go on any of the nasty drugs and did HSCT in Moscow, Russia in October 2015. My edss improved one full point to a 3 and I have not seen any progression till date. I have done 4 mri's since transplant. If I was in the same position again, I would do the same thing I did.

Thanks for posting the news about ms Ed . But i am very curious about dr Su Metcalfe her findings.Could you are anyone give a update ? Excuse my bad englisch :)

Hi Ed
I am in Monterray Mexico right now for hsct. Some original trials were done ic Canada in the 1990s in Ottawa and were successful. All the protocols used at the 23 places doing it are much less harsh , and successful in all types to some extent. They take the cells from your blood, and do not haveto freeze them due to their timelines. They do extensive pretesting and consultation. Its is done on outpatient basis with accomodation and transport. It is a way to stop progression , recovery is a bonus.

MS doesn't choose by age or how severe the disability!! This study is going to be so skewed by not involving an open door at some of the Hospitals!! The Clinics that have been doing this Treatment and have it down to a Science, with all that goes along with it, did anyone think about looking at their operation, statistics, Rate of Success? One of the Clinics is run by One of the Top 5 Doctors in the World in last years Medical Journal 2019. He has studied Hematology and has taught Hematology at some of the top Hospitals in the USA, even though he is From outside the USA, but what a wonderful clinic He Runs with a Wonderful Team of Doctors, Nurses, All the Other Specialty People Needed. He even Has a State of the art facility For Patients and their caregivers two stay in right close to The Clinic and Drivers to take you to all your appointments. They have a full service cafeteria open all day and Cleaning service to each persons individual room. If you ever go to their Website or have the pleasurer of reading what patients write or even say if you are Lucky enough to talk to one, is the feeling of sadness of leaving behind a Top Notch Medical Clinic, Staff From Top clear to the Drivers and Cleaning staff. So I have signed up months ago, don't know it I will have to change my month, but that won't stop me. I have had RRMS for 20 years. It has only of late caused me many different problems, the Main One Walking with a Walker for the last 8 months. And Over the Years I have been on All The A B C Drugs and dealt with shots. Then put on Gilenya a pill Finally, no more shots!!!!! But none of the DMD"s have really work. I'm going off Gilenya, which we were not told about any of the scary side effects when we went on the wonder drug of the moment. Have to be off your DMD For 3 Months before Treatment. I'm Praying for the Best!

My 30 y/o son just got the MS diagnosis. His professional life was just beginning to take off and to be married this fall.
Makes me sick to see Fauchi and company (who have flip flopped on so many fronts with this covid-19 pandemic) tell us to wait for another drawn out study while lives are destroyed, all the while there is years of data on previous procedures available in the literature. President Trump really needs to be lobbied in a big way to get this procedure (aHSCT) into his 'Right to Try' legislation because the detached and egotistical bureaucrats will only change their ways when it effects them personally.

After seeing this it was exciting but a little sad on my behalf. I have progressive MS and would love to see the outcome from similar persons. But still hopeful that something will come. I want to be able to walk again. Also saw have a cbd in the study and I think clincal, that they found it can repair the myelin in the spine. With that being said I have talk to a guy that was bed ridden and only given a year to live. He started using cbd and marijuana, now he's walking so I believe there is benefit with that and believes those are the reason for his comeback. Either way I have great hope that one day I will be back on my feet.

I went with my sister in Jan 2016 to Mexico for her HSCT.
She has had RRMS since 1995. Every year when she had her MRI she had developed new lesions and had 2-3 relapsed during the year. She had been on several different drug treatments. Since her HSCTshe has had no new lesions and no relapses. The damage done by lesions is irreversible, BUT no new damage. At first, alot of people note improvement and for some it stays but for some their mobility and other symptoms stay the same. Mexico was a highly professional and very attune to your every need. We regret we didn't do this several years earlier and encourage people not to listen to their neurologist about the negativity of going to Mexico. They use chemotherapy which is a must for the treatment to work. Your hair falls out and maybe a couple of days you don't feel great but not as bad as imagination makes it out. 28 days and you go home and leave MS in Mexico! PS. There is alot of $ involved in drug treatment and drug companies and some doctors reap the benefits. Plus alot of doctors won't do the research as to why this works!

This disease should be coming from some place if we could built a live map of present and active people ms may be we could locate the generation and development of this disease.