Stem Cell MS Patients Lead Normal Life Thanks To aHSCT Procedure
People with MS who were involved in a long-term clinical trial are out and about enjoying a full and normal life with no signs of the disease. This follows their recovery from the stem cell transplants involving aggressive chemotherapy, or aHSCT as the procedure is known.
Results of the clinical study reached major news sources, including Multiple Sclerosis News Today on Friday after first being unveiled in The Lancet.
The 24 multiple sclerosis patients recruited for the trial were severely disabled but, with the exception of one who died, are now walking, working, kayaking, and skiing.
The trial is the first in the world to show complete long-term stopping of relapses of the debilitating disease and formation of new brain lesions. It used the Autologous Hematopoietic Stem Cell Transplantation (aHSCT) method with strong chemotherapy drugs to kill off the patients’ immune systems before rebooting them with their own heathy stem cells.
Normal life includes marriage and skiing
So, let’s take a look at how things are going now, thanks to the Daily Telegraph’s science editor Sarah Knapton:
Jennifer Molson (Picture: Trevor Lush)
Jennifer Molson, who was diagnosed with MS in 1996, and received her stem cell transplant in 2002 said: “Before my transplant I was unable to walk or work and was living in assisted care.
“Now I am able to walk independently, live in my own home and work full time. I was also able to get married, walk down the aisle with my Dad and dance with my husband.
Jennifer Molson skiing after recovering from MS. (Picture: Ottawa Hospital)
“I’ve even gone downhill skiing. Thanks to this research I have been given a second chance at life.”
Dr. Mark Freedman, of the University of Ottawa and Ottawa Hospital, where the trials were carried out, said: “Jennifer, she freaked me out one day when she came to the clinic wearing high heels. This was a girl who could barely walk.”
The trial included 24 participants with aggressive, relapsing MS who were followed for up to 13 years after treatment.
This how aHSCT works: First, a person is given medication to encourage their stem cells to migrate from their bone marrow into their blood. These stem cells are then collected from the blood, purified and frozen.
Next, high doses of chemotherapy drugs are used to destroy the person’s diseased immune system. This necessitates a stay in isolation.
The stem cells are then unfrozen and transplanted back into the same person, so that they can give rise to a new immune system that has no memory of the previous pattern of attacking the central nervous system.
Only for those with active MS
Ms. Knapton writes:
Dr. Mark Freedman, Dr. Harold Atkins, Jennifer Molson and trial coordinator Marjorie Bowman. (Picture: Ottawa Hospital)
“Our trial is the first to show the complete, long-term suppression of all inflammatory activity in people with MS,” said Dr. Harold Atkins, a stem cell transplant physician and scientist at The Ottawa Hospital, and associate professor at the University of Ottawa.
“A variation of this procedure has been used to treat leukaemia for decades, but its use for auto-immune diseases is relatively new.
“This is very exciting. However, it is important to note that this therapy can have serious side effects and risks, and would only be appropriate for a small proportion of people with very active MS.”
It must be pointed out that during the trial one participant died of liver failure due to the treatment and another required intensive care for liver complications. However, comprehensive medical tests, at centers where this treatment is used worldwide, are used to screen out patients judged to be at risk.
The Telegraph continues:
Dr Emma Gray, Head of Clinical Trials at the MS Society, said: “This type of stem cell transplantation is a rapidly evolving area of MS research that holds a lot of promise for people with certain types of MS.
“This treatment does offer hope, but it’s also an aggressive procedure that comes with substantial risks and requires specialist aftercare.”
But experts said the results constituted a breakthrough in the treatment of MS.
Back to Ms Knapton;
Prof Siddharthan Chandran, MacDonald Professor of Neurology, MRC Centre for Regenerative Medicine, University of Edinburgh, said: “This is an important and carefully conducted proof of concept study that demonstrates that powerful chemotherapy based treatment for a selected subset of MS patients with very aggressive disease is effective in preventing further disabling relapses and, in a proportion, appears to render them effectively disease free.”
And while aHSCT is NOT a cure, Dr Stephen Minger, stem cell biologist and independent consultant, of SLM Blue Skies innovations Ltd is enthusiastic. Sarah Knapton explains:
He said: “The clinical results are truly impressive, in some cases close to being curative.
“For a life-long progressive disease like MS with few treatment options this is really exciting data. I would consider it a breakthrough therapy.”
Comments
S Parker
I have been trying to get my husband into a stem cell transplant study. He is over 65 but probably has had MS since age 16. He's in assisted living at our own expense. I hate sitting by watching him lonely and deteriorating when there are newer approaches and treatments in research studies. He's been on Tysabri and Copaxone and two of the new oral medications.
Karen Evans
I'm so sorry to hear that I've been told 4 years ago that I have relapsing remitting ms and was put on tecfidera which made my liver very high and me very ill dizzy headaches and sickness .I have told my specialist in Northumberland England that I refuse to take anything more for ms I want to have the stem cell treatment . I hope like you it comes available for all to finally have a normal life .
Vanessa Aguilar
Karen they are doing AHSCT in London at Kings College Hospital as well as Hammersmith and Charing Cross Hospitals. It's not in a trial. Dr. Kazmi is one of the doctors. The criteria is strict but you may fit it. Google it for more information. RRMS, active lesions, have tried 2 disease modifying drugs that didn't work and age and recently diagnosed. Join the closed Facebook group UK HSCT for ms and autoimmune diseases. You will get so much information to be able to make a more informed decision and lots of support. I think they'll be starting it in Glasgow next year. The article in the papers gives the trial results from three years ago and the lady that died was not on the trial but had the procedure in Israel 13 years ago. There were complications but she died after going home to Florida. I wish you well!
Pam Coleman
My 35 year old daughter was diagnosed 3 yrs ago with aggressive RRMS and placed on Tysabri. She is doing well with no relapses so far. But due to the serious side effects of the drug I would like to get her off the drug and have aHSCT. Why can't she have aHSCT instead of having to wait until she fails on 2 or more DMDs and develops disabilities? Why not "nip" the disease I the bud?
nadine
pam, i agree w. you but don't see that happening yet. i was 35 and in a nursing home and hsct was a final option. it worked wonderfully for me physically. cognitively it did not help so I'm still on ssdi and do wish i could have had it sooner. i saw what it cost medicare plus the month of inpatient pt i needed and we're talking over 400k! just you knowing is huge.
Pam
Thanks, Nadine. Maybe one day............
Maureen
Does this treatment work for people with Primary Progressive MS?
Although some people claim that it is only for RRMS, that is actually untrue. I know people with PPMS who have been treated successfully. If it is ok with you, I could pass on your email address for one of them to contact you direct. Please let me know, by replying to this comment, if you would like me to do that.
Sheryl Parker
Please DO pass on my email address for direct contact. My husband has PPMS now.
amany sabet
Could u pls leave me email too. I have ppms
Dianne Welgan
Mr Franks, I am a 58 year physiotherapist and have PPMS. Still work 2 days a week but use a cane due to right dropfoot. I have been anxiously awaiting more info on this treatment. I live in Canada. Could you assist me to find a reputable treatment facility? I would be willing to go to Mexico if necessary.
Dianne
I am a 58 year physiotherapist with PPMS and have been long awaiting this news regarding HSCT. I live in Canada. Could you pass on my email as well and/or give me any info regarding reputable clinics. I would go to Mexico if necessary.
Hi Dianne, Clinic Ruiz in Mexico is one of the best, along with Dr Fedorenko in Moscow. They both perform the correct aHSCT with remarkable success rates. There are others in Israel, the Philippines, and so on.
Dianne
Thank you Ian
Dianne
Oh and could you pass on my email address for direct contact as well. Thanks so much in advance
Dottie Kazmir
My daughter, age 56, has PPMS. She walks with help of a walker and is in a wheelchair when we go out. Would you please e-mail with more information regarding this procedure?
Thanking you for your attention in this matter.
Sincerely,
Dottie Kazmir
[email protected]
amany sabet
Hello..yes pls i would like to have contacts of these patients...i am a 53 yrs old female with ppms on LDN and sativex and diagnosed in 1999. Have heard this stem cell procedure is only for rrms
Rod Bain
Hi Ian,
I am in the PPMS stage with a EDSS score of 4-5,
I am due to have this HSCT treatment in late February 2017 in Mexico, everyone I take with state that it will not work for me. I am 57 and was diagnosed 4 years ago.
Could you give some contact details for PPMS patients that this procedure has been successfull.
If I can stop this progression I would be more than happy, if I get some improvement would be a bonus.
Vanessa Aguilar
Yes. It works for all types of ms. Best if you're in early stages and lower Edss score. Most Hosp will only do the procedure up to EDSS 6. Check out the Facebook groups HSCT Russia HSCT Mexico and HSCT uk. There are a lot of ms groups on there but they are closed so you need to ask to join. Best wishes.
Stephanie williford
Is this treatment available? If so, where?
Joan Quilter
I discovered that in the US there are only 2 places that do this procedure: Northwestern Univ. and a clinic in Seattle.
The patient can't be too disabled; I was told by MS nurses in the Seattle clinic that when one is severely disabled (like my daughter), there is a high risk, and they don't want to try the procedure, if there's a high risk of dying due to the chemo.
nadine
3 years ago i was treated off study at northwestern. my edss was 6.5 which i believe was the max dr. burt would take on. now it's 3.5. what is your daughters edss?
Elizabeth White
You have to stay within 10 minutes of Northwestern in Chicago. So,90 days of staying at a hotel can be very expensive.
Paul Ladikos
I have PPMS and I'm on cholesterol medicine for my MS I would do this treatment. Please send information to me. Thank you.
amany sabet
Hi...is cholestrol medicine beneficial for ppms..thanks
You will find that some medical people only talk about active RRMS - but I know HSCT veterans who had PPMS and say the HSCT worked well for them.
Gail Fulford
Ian, I'm a 62 year old woman who was dx'd in '92. I have PPMS; am in an Health Care Facility; can't walk; have retained my cognitive functions. I'm a huge proponent of the HSCT treatment. Would anyone give me this treatment & if so at what clinic(s)? Thank you ...
Olive Bird
does it matter how old you are ? I am 71, had m.s.38 years, now my balance is really bad, what have I got to loose? But are they doing it in Australia ?
Pauline
I would love to know the answer to this too Olive. My mum is in a similar position as you. She is also 71 and has suffered from an early age. She feels she has nothing left to live for. To find something that could at least ease some of her symptoms would be life changing for her.
Kathy
Help. I'm 49. I've been diagnosed 14 years with RRMS. Had the worse attack ever last June and never fully recovered. Improved. But not much. Back to work after being out for 6 months. Still can barely lift my left leg and foot but doc says it's not "true drop foot". Walking with a cane now. Seem to be ok cognitively. Please forward me the criteria who I/my doctor needs to contact. Thanks!
Donna
Here is a list of all the places that do HSCT in the world. There are a lot scams out there, so do not stray off of this list!
https://www.the-irf.org/autoimmunity/hospitals-performing-hsct.aspx
HSCT is not "experimental" or new. It has been around since the late 60's and is done hundreds of times everyday for certain types of blood cancers, and has been done in trials for MS for ten years!
People with ALL types of MS can benefit from HSCT. As long as your EDDS is under 7.5 you can get treatment. Hundreds of people have done it already. It won't be FDA approved in the US until 2022. I can't wait that long! I'm going to Mexico in January 2017. It's not cheap, but either are the drugs..year after year after year.
Don't expect your neurologist to supportive of HSCT. Most of them don't really know that much about it. A hematologist is who will treat you, as this is really a chemotherapy treatment. Your stem cells are used to "reboot" your immune stem and helps you heal faster. You won't need your neurologist any more after you are treated. You won't need to take expensive, poisonous drugs that "might" slow down the progression either.
Join this group for all the information you need.
https://www.facebook.com/groups/149103351840242/
Shasha
HI, Stem cell transplant may help, but I can dance/ski/do cartwheels etc and much more by changing my doing the Celiac diet/vitamins/good oils/minerals/probiotic...LDN..detoxing which helps suppress my MS. To me all MS people can heal and for cheap. They may just need the basics for health that an Alternative doctor/chiropractor can offer. LDN may help 99% of MS people as it helps block hidden gluten and trying to eat gluten free in addition is needed since it is a low dose.
Lowering the immune system before the transplant may hurt some MS people who have infections in them like Lyme/herpes etc..
I am glad what I do works well. MS people may have weak mitochondria. Do the stem cells fix the mitochondria and Celiac?
Vanessa Aguilar
Shasha you are lucky that you can still do all of those things but as you know, MS effects everyone differently no matter what they do. I do all the same things as you do as well as gluten and dairy free, organic food and veg. I don't take LDN as my doctor won't prescribe it and I don't feel it's worth going private for a small chance that it may work. From what I've researched it doesn't work for 99% of ms'ers. As it doesn't work for everyone, I feel that with all the other things I'm doing, I'm doing the best for me. I also have a personal trainer 3 times a week, go to the gym and another exercise class as well as art and gardening classes. This still hasn't stopped my EDSS score from going up to 6-6.5. It seems that sugar may cause inflamation so worth cutting out where possible. It's the Chemo that kills off the immune system, so when the stem cells are returned to the body, they start over as new. Autologous HSCT returns your own cells so no need for anti rejection drugs. Stem cells alone won't 'cure', halt the MS long term. It works for a while but because the body continues with most of the old damaged stem cells in the body, the damage to the mitachondria etc continues. This is where the scam places make their money and people have to go back to have it done again.
Shasha
Hi, Each MS people can figure out their health by hair tests/Genova test/Zyto scan etc. It took me 17 years to figure out my diet/detox heavy metals/figure out my supplements and then bioidentical hormones. Alternative doctors/chiropractors/acupuncturists/electrodermal people are worth the money. My MS is due to low oxygen in the brain due to Celiac. Any thing that raises oxygen/rebuilds the cells to burn oxygen/helps circulation/helps the immune system work right helps my MS.
Yes...I would think the person eating gluten/not getting sunlight or exercise etc may destroy what the stem cells helped since they didn't change their ways that were the root cause of the MS.
LDN is awesome help...like a miracle. It may help 99% of MS people, but they can't do LDN alone...need to also do the Celiac diet etc. LDN helps block hidden gluten/helps heal the intestines so they absorb nutrients/helps the immune system work right. LDN is about $1 a day. LDN maybe awesome help for MS people...more than a small chance...more like an awesome chance it will help. LDN..may notice health not going down and being stable and heavy metals go down/gut lining heal/personality and depression heal/energy go up/sight be better/adrenals are better and hearing etc. I feel like I am dying when I don't take the LDN. Gluten maybe in 23% of supplement and in the air and hidden many other places. LDN is great help. If LDN doesn't help MS people it maybe due to them think they only need LDN and no other help. LDN is a low dose..can't eat gluten and think it can block all of it out. They may override the medicine with what they eat. They need to change their diet/life style etc..not only do LDN.
Sugar may swell the brain/body. I don't sleep well when I eat sugar as it lowers oxygen. Sugar also slows mitochondria and lowers the immune system.
I could not do Chemo...would hurt the gut lining and gluten/GMO/Lyme etc. already hurt the gut lining and lower the immune system. Spirulina/blue green algae/hyperbaric chamber may increase stem cells. I am doing ozone treatments for Lyme..raises oxygen which may also help stem cells.
To me it is not luck, but taking my body/brain/hurt mitochondria and giving it the things it needs to rebuild it and make it work better. What I do is "life support"...can't stop it...need to continue to it daily rebuild my cells to work right.
Amour thyroid...not by TSH is important. Many MS people are not getting thyroid medicine, but that is controls the speed of the engines of the cells (mitochondria). A thyroid test doesn't show mitochondria or heavy metal damage and thyroid dose needs to be done to make symptoms go away..not just get the numbers right.
I am glad you are doing well. Happiness....
Vanessa
Olive Bird, Pauline, they are doing the procedure in Australia but the criteria is very strict. Kirsty Cruise from Australia, had the procedure abroad because of the time constraints and criteria. She is doing really well. I know of someone of 69 that had had the procedure and is also doing well. His EDSS score was about 4. Dr. Federenko in Russia has done ver 550 procedures already over the last few years for ms. Join one of the closed Facebook sites e.g. Russia HSCT for ms and autoimmune diseases, Mexico HSCT for ms etc. Research as much as possible before making a decision and work out whether it is suitable for you. It costs from $50,000 usd upwards. Canada has a hospital that have been doing a trial but I can't remember where it is. The procedure is carried out at many other sites including Israel, Phillipines, Singapore etc.
James
On average how much does this treatment cost? Nobody mentions it. Sure there it more important it works but if not it's a huge outlay you can only really afford once. Thanks
Hi James. It is not an inexpensive process but the good news is that you should only need it the one time. I suggest you join one or more of the various HSCT groups in Facebook to hear more about the process from peple who have been through it.You will also find contact details for the clinics so you can ask about current prices ahd their requirements as to your health.
Please note: I am a journalist/MS patient, NOT a doctor. My comments must not be taken as medical advice.
Shasha
$54,000 for Stem cell transplants is one price I heard. Each place that does it may be a different price. LDN is $1 a day...is great help for me in addition to eating no gluten/dairy/soy/sugar/GMO etc ...basically Asian diet which is not a problem for me. The Asian diet helps the brain/body.
nadine
i had hsct at northwestern in chicago 3 years ago. my medicare and secondary covered it all. it's about $120k plus i went directly to inpatient rehab for over a month right after hsct which was also around $120k. i had a private room, pt hours a day, 7 days a week. it was intense and so worth it! and there is the paying for flights back and forth and hotel rooms, etc. it is so worth it and i wish i could have had it sooner.
Jay Thakkar
Hey , one of my friend recently has been diagnosed with RRMS. We are Indians. Is there any way to go through HSCT without spending 30, 00, 000 (50, 000 $)indian rupees.I am an Intern doctor here . Is there any centre in India which performs HSCT for MS ? She has 2 milder relapse till today .EDSS is about 1.5 . Shall we consider this treatment ?
Shasha
Hi, Tell the MS people in India to eat only food from India and no GMO. I avoid gluten (wheat/barley/rye..oats/corn) and hidden gluten/dairy/soy/sugar/GMO/bad fats/saturated fat/heated oils which helps my MS in addition to vitamins/good oils/minerals/probiotic...LDN..detoxing. LDN is awesome help for me, but I need to drink more water when taking it. I recently got Lyme which swelled my brain/body. Ozone treatments/herbs may help clear out infections. Trying simple things helps me. Fixing the root cause helps a person heal. Hair tests/electrodermal tests/Zyto scan help me.