At last! As a person with MS (PPMS) and a long-term proponent of HSCT who has long been frustrated by the stand taken by many neurologists, I applaud your current reasoning.
My neurologist in Oxford told me seven years ago that I would be brought back in a box in I had HSCT. My haematologist in Oxford told me seven years ago that he couldn't understand why neurologists weren't referring their MS patients to him for HSCT. He supported my decision to have HSCT, especially as at that time there was no other treatment offered to me, and my condition was deteriorating. So I was the third British MS patient to travel to Russia for HSCT. Hundreds followed in my footsteps. I am currently seven years free from progression, and will be forever grateful that I was able to have HSCT, despite the cost.
I'm afraid that I must disagree that "all comers" are accepted for HSCT abroad because I can tell you that every single patient goes through extensive testing to ensure their fitness to undergo HSCT. Not everyone is accepted. I'm very happy that I was.
Good: I have been lucky enough to have many symptomatic improvements (things like swallowing problems, bladder problems, intention tremor, foot drop and other symptoms have either improved or disappeared altogether) - bonus!
Bad: I now have avascular necrosis which was caused by the steroids used during HSCT, and also secondary immune deficiencies, probably caused by the Rituximab used during HSCT. I would still choose to have HSCT, though.
I can't thank you enough for the extraordinary work you conduct !!!
Having MS for 21 years and knowing lots of pwMS I can only agree with your perspective towards MS thérapies, we must go hard and as soon as possible to have an early stop in disease progression!
Even without access to AHSCT or HSCT if treatments like Alemtuzumab or Cladribine could be administered as 1st line therapy there would be two big advantages:
1st - stopping progression when there's very few irreversible lesions
2nd - pwMS receiving these IRTs at younger age would have more "strength" ( physically, psychologically, and others) to better mitigate possible side effects.
Done and dusted just last month ..yes the cost and funding was something that held me back for at least 2 years and then covid hit but it felt right to push forward regardless we all know once a woman makes up her mind there is no stopping her !! So I've done it and now,as Dr ruiz in Mexico stated your stem cell transplant was extremely successful ....he said it was tome to start luvibg "go eat haggis " ...I couldn't be happier that it's all behind me and yes I'd support you all the way in getting the lustbof dmts shaken up a bit to offer all options to everyone before ms does too much irreversible damage...why do we need to deteriorate before they'll give us what can potentially save us from disability....crazy.....keep going with your soap box ...shout sing wave a flag just get noticed so you can help so many of us ....thankyou for your writings
I would love to know how you’d advise someone with active RRMS (not highly active) seeking HSCT first line? i don’t fit the current NHS guidelines and trial selection criteria, and the trial could take a decade or more to have results implemented. Given the improving safety records and evidence of benefit, and time being of the essence, would you now reconsider your advice on whether to travel abroad for HSCT?
As a 20-year MS patient who stumbled across HSCT info in 2010, I did not meet the guidelines for Dr. Bert’s trial. Then I happened to read a post by Gwen that her Dr. told her all 55-year-olds were not created equal. Access became my mission!
Docs in the US then and now either don’t know or don’t share this info. Not only did I have to do my own research, but also convince family members and docs of its value. Then where to access and how to fund. Doing this with little or no support and brain fog was a challenge. By the time I landed in Puebla I was 6.5 SPP, 61 and 25 years into the game. It was the best thing I have ever done and the best medical care I have ever received. Progress in mobility has been slow but always forward. Lots of other symptom improvements as Gwen mentioned. The biggest and most important—I got my brain back and with that hope for a future.
Hello Prog G, iF your theory the EBvirus infection is the cause of MS. Then, how does aHSCT prevent or slow progression of MS ? Do the aHSCT Chemotherapy drugs show anti-viral activity against EBVirus or is the mechanism of action or explanation unknown? Or does the aHSCT reset the immune system per the generic explanation by most experts after Stem cells re-poplulation to simplify? The Post Cancer concerns are worrisome after aHSCT/Lemtrada, how do cancer survivors fair after given similar drugs years 1 through X, do new cancers or previous cancer rebound?
I've struggled with what to do. Diagnosed with ppms but not currently experiencing disability. I have a bit of neuropathy that comes and goes but doesn't seem to get worse. 3 full sets of MRIs over 2.5 years. No brain lesions and the spinal cord lesions seem stable. But sitting around waiting to see if things get worse is very hard to do. My neurologist is no great fan of ocrevus, especially given I'm closer to 60 than 50 yrs of age. Myself I'd consider AHSCT but I'd jump at subcutaneous cladribine in a second.
As a patient under yourself, I have to say how grateful I am for having had not 2 but 3 rounds of Alemtuzumab. Despite several up and downs since diagnosis (15 yrs this November) and having Alemtuzumab as a third DMT following Copazone and Tysabri I have had 6.5 pretty stable years. For this I am extremely grateful - but always try to keep up to date and follow keep an open mind! MS is a part of me but all of me thanks to the great work you and your team do!
At last! As a person with MS (PPMS) and a long-term proponent of HSCT who has long been frustrated by the stand taken by many neurologists, I applaud your current reasoning.
My neurologist in Oxford told me seven years ago that I would be brought back in a box in I had HSCT. My haematologist in Oxford told me seven years ago that he couldn't understand why neurologists weren't referring their MS patients to him for HSCT. He supported my decision to have HSCT, especially as at that time there was no other treatment offered to me, and my condition was deteriorating. So I was the third British MS patient to travel to Russia for HSCT. Hundreds followed in my footsteps. I am currently seven years free from progression, and will be forever grateful that I was able to have HSCT, despite the cost.
I'm afraid that I must disagree that "all comers" are accepted for HSCT abroad because I can tell you that every single patient goes through extensive testing to ensure their fitness to undergo HSCT. Not everyone is accepted. I'm very happy that I was.
Glad that you could stop the progression. Are there any other long-term effects from the treatment you have noticed?
Yes, both good and bad.
Good: I have been lucky enough to have many symptomatic improvements (things like swallowing problems, bladder problems, intention tremor, foot drop and other symptoms have either improved or disappeared altogether) - bonus!
Bad: I now have avascular necrosis which was caused by the steroids used during HSCT, and also secondary immune deficiencies, probably caused by the Rituximab used during HSCT. I would still choose to have HSCT, though.
Thanks for your answer. Which kind of secondary immune deficiencies are you affected of?
Great to hear! How old were you day 1 aHSCT, how long ago were you treated and location of treatment to help us understand your journey?
I was 54 years old when I had HSCT in Russia in 2014. Seven years progression free!
I can't thank you enough for the extraordinary work you conduct !!!
Having MS for 21 years and knowing lots of pwMS I can only agree with your perspective towards MS thérapies, we must go hard and as soon as possible to have an early stop in disease progression!
Even without access to AHSCT or HSCT if treatments like Alemtuzumab or Cladribine could be administered as 1st line therapy there would be two big advantages:
1st - stopping progression when there's very few irreversible lesions
2nd - pwMS receiving these IRTs at younger age would have more "strength" ( physically, psychologically, and others) to better mitigate possible side effects.
Done and dusted just last month ..yes the cost and funding was something that held me back for at least 2 years and then covid hit but it felt right to push forward regardless we all know once a woman makes up her mind there is no stopping her !! So I've done it and now,as Dr ruiz in Mexico stated your stem cell transplant was extremely successful ....he said it was tome to start luvibg "go eat haggis " ...I couldn't be happier that it's all behind me and yes I'd support you all the way in getting the lustbof dmts shaken up a bit to offer all options to everyone before ms does too much irreversible damage...why do we need to deteriorate before they'll give us what can potentially save us from disability....crazy.....keep going with your soap box ...shout sing wave a flag just get noticed so you can help so many of us ....thankyou for your writings
I would love to know how you’d advise someone with active RRMS (not highly active) seeking HSCT first line? i don’t fit the current NHS guidelines and trial selection criteria, and the trial could take a decade or more to have results implemented. Given the improving safety records and evidence of benefit, and time being of the essence, would you now reconsider your advice on whether to travel abroad for HSCT?
As a 20-year MS patient who stumbled across HSCT info in 2010, I did not meet the guidelines for Dr. Bert’s trial. Then I happened to read a post by Gwen that her Dr. told her all 55-year-olds were not created equal. Access became my mission!
Docs in the US then and now either don’t know or don’t share this info. Not only did I have to do my own research, but also convince family members and docs of its value. Then where to access and how to fund. Doing this with little or no support and brain fog was a challenge. By the time I landed in Puebla I was 6.5 SPP, 61 and 25 years into the game. It was the best thing I have ever done and the best medical care I have ever received. Progress in mobility has been slow but always forward. Lots of other symptom improvements as Gwen mentioned. The biggest and most important—I got my brain back and with that hope for a future.
Hello Prog G, iF your theory the EBvirus infection is the cause of MS. Then, how does aHSCT prevent or slow progression of MS ? Do the aHSCT Chemotherapy drugs show anti-viral activity against EBVirus or is the mechanism of action or explanation unknown? Or does the aHSCT reset the immune system per the generic explanation by most experts after Stem cells re-poplulation to simplify? The Post Cancer concerns are worrisome after aHSCT/Lemtrada, how do cancer survivors fair after given similar drugs years 1 through X, do new cancers or previous cancer rebound?
I've struggled with what to do. Diagnosed with ppms but not currently experiencing disability. I have a bit of neuropathy that comes and goes but doesn't seem to get worse. 3 full sets of MRIs over 2.5 years. No brain lesions and the spinal cord lesions seem stable. But sitting around waiting to see if things get worse is very hard to do. My neurologist is no great fan of ocrevus, especially given I'm closer to 60 than 50 yrs of age. Myself I'd consider AHSCT but I'd jump at subcutaneous cladribine in a second.
As a patient under yourself, I have to say how grateful I am for having had not 2 but 3 rounds of Alemtuzumab. Despite several up and downs since diagnosis (15 yrs this November) and having Alemtuzumab as a third DMT following Copazone and Tysabri I have had 6.5 pretty stable years. For this I am extremely grateful - but always try to keep up to date and follow keep an open mind! MS is a part of me but all of me thanks to the great work you and your team do!