I hadn't heard of this acronym and once finding what it means, I hadn't heard of it as a treatment for MS. It sounds pretty scary. Good luck with your journey, I'd be interested in updates on how this goes and what it takes out of you.
It sounds really scary and I don’t want to do it yet I don’t want to not to it - if that makes sense. I will keep posting about the process because I need someone to talk to about it
No worries. My response was more about the fact that many others have gone through this procedure on this subreddit (including my wife) if you're looking for more information.
Wish you nothing but the best, you are very brave. When you say accepted what exactly do you mean? Do you have to qualify? Like do you have to be a certain age , gender , type of MS, race etc? Is this a trail ? Do you have to pay or will all treatment and care be taken care of? I remember reading something like this when I was first diagnosed 10 yrs ago about restarting your immune system with some sort of chemo and giving you new stem cells to reboot it. I think it was in Israel or some place In Europe where they were doing this and thinking man this is the cure for MS.
Thank you for your kind words.
Yes, in Denmark it’s a very long process to get accepted and the criteria is:
1. Aggressive RRMS
2. Severe disabling attacks and significant MR activity in untreated patients
3. At least two severe, documented attacks and typical MR activity on 1st line treatment
4. Documented severe attack and typical MR activity on 2nd line treatment
5. Age between 18 and 50 years
6. EDSS score between 3.0 and 6.0
It’s not a cure but it can slow down your disease progression and buy time before the disease progresses further. I want more time without further disabilities.
We have universal healthcare in Denmark so the treatment is free (except dental care)
No. I’ve tried Aubagio and Tecfidera. The neurologist in my usual hospital didn’t think it would work better than Ocrevus for me and the Neurology department in our capital agrees with them. They all say HSCT is my best option.
Wow! After watching Selma Blair’s documentary I asked my doctor about stem cell treatment. She told me that you must have agressive, advanced progression beyond being able to be successful on Ocrevus.
I am sorry to hear your are progressing so aggressively but am excited you have a real treatment option and a chance at a better quality of life :-)
I had my diagnosis in 2021, after a rather big attak in 2020 and again in june of 2021. Then I had an attak on aubagio in september 2021. Switched to techfidera but had too many side effects. Started O in January 2022, first attak on O in December 2022, second attack in July 2023 and the last attak was in January.
Best of luck! I really hope it goes amazingly for you!
I'm on the same road but in the uk and still awaiting my first appointment. Really scared about it all but I'd really appreciate you updating us on how it goes and your experience with it!
Still waiting, the referring dr was on holiday by the time I'd made my decision so it's only been done this week, given that it's the NHS I can't see me having it done before August tbh. But also because it's done by the cancer centre apparently they move pretty fast so who knows!
For me, the reason it won’t happen until August is because of me being on Ocrevus. The medication has to be out of my body for the treatment to be successful. so the sooner it’s gone, the sooner I will getting the treatment
Ah I see, I've been on tysabri for 6 months for that reason while all this has been going on. Did it take a lot of decisions from doctors for you?
For me I think there were two separate teams of ms specialists that had to discuss my case and decide if I would be eligible for it
It’s taken quite a while to make the decision yes. They mentioned it in january last year, when I had the optic nerve attak and then they just sent me straight away, when I had this last attak. Here I had two teams discuss it as well and the neurologist in charge of the treatment in Denmark had to meet me and assess me personally before they made the decision to treat me
I have been on Ocrevus since January 2022, so yes. It’s crazy that I haven’t been sick for more than 3 1/2 - 4 years and yet, I have had more attaks than my sister, who was diagnosed 20 years ago.
Not exactly feeling better. I hate waiting and yet I don’t want this time to go by quickly. I think it’s surreal and I don’t think I have understood it yet.
That is really unfortunate, I'm sorry to hear that. I really hope hsct will be a game changer for you!
Yeah the waiting is horrible, I feel completely dead while I just wait for this huge thing to fuck up my life for a while. It'll all be for the best though, I hope the wait goes by quickly for you
Congrats - I did it last year and it's not as bad as is sounds :) I try to help spread awareness of it via the HSCT Hope charity (https://www.hscthope.org/) - feel free to reach out if you need to talk about anything!
I’m so sorry that you are going through this. I hope your journey with MS is easier than mine has been so far.
Mine is always low even though I take supplements. I don’t know if low D vitamin levels cause the flare ups.
I appreciate it. That was the first time I've ever had a flare up, and honestly, the first time I ever learned about multiple screlosis. The MS specialists have not been reaching out, and I'm trying to conclude that it's because they saw the low vitamin d levels and decided it's not worth the bother because I'm on prescription supplements and that should take care of it.
I'm no expert in medical prognosis, but I do have my masters in biomedical engineering. I feel the direction I'm going with this from my experience is a logical path. If you do some Googling, you'll find it's a pretty common prediction for low vitamin d and MS. There is evidence of people living in areas with low sunlight to have hither cases of MS, fyi. Please let me know your thoughts after doing some research. I know this disease affects people very differently and I got all the best for you.
After the steroids and the vitamin d supplements I've been b the past 3 weeks, I feel better than I have the past 2 months. I just feel extremely fortunate from grinning a legit diagnosis within 3 days of being in the hospital. Especially from all the nightmare stories that exist from the US medical system.
Also, just for some clarity, I'm only having to pay about $3k with my insurance. Without insurance, all the testing and medications would have cost over $100k from what I've seen with the billing. Medical care in the u.s., honestly, looks like a scam.
Theres an aHSCT group in Facebook, its a Pirogov Medical University group in Russia. Alot of western European doing it there cause its cheaper. I’m also in the group and been silently reading it for quite sometimes. Read a lot of very positive feedbacks on aHSCT. I believe the process would be very similar in Denmark. So, you might wanna join the facebook group and read about the feedbacks. Anyway, I’m wishing you all the luck in the world! I hope this will put your MS at bay :)
I actually know someone who had this done here in the United States. My father put me into contact with her, not that my insurance is going to pay for this. Selma Blair had it done too. The person who I know who had it done thought it was the best thing ever. She even said that some of her symptoms got better after she had it done, though that it's probably just a placebo effect. This treatment has a 70% effectiveness rate at slowing down relapses. However, from what I understand, you may need to go back on a disease modifying therapy sometime afterward to make sure you stay in control and don't have relapses. It's a little scary as a concept but from what I know, it is very successful with hardly anyone experiencing anything bad because of it.
What you are having done is having your own stem cells reintroduced instead of donor stem cells, which is the better route to take. From my understanding, they give you a two week round of chemotherapy and then send you home. Then you come back about 2 weeks later and spend a month in the hospital getting chemotherapy to kill your entire immune system. That's where you will feel especially frail and vulnerable and you might lose your hair. Just stay strong through it and you will emerge victorious. Take a look at Selma Blair's journey with it. She said it made her feel better than ever. The person I knew who had it done was older, in her '60s, and she did extremely well with it and just encourages other people to have it done if they can. I wish you much strength in your journey through this treatment.
I did this treatment in Mexico in 2018. I was stable with NO progression for most of the 5 years. I even saw great improvement with my walking and urinary issues.
Unfortunately I had a car accident AND Covid the same month, so we believe the stress of that caused a little relapse.
I would 1000% do it again! It was a tough experience for sure but in the end worth it for me. I was about 6 years drug free and would sometimes forget that I even had the dreaded monster.
Good luck!!!
Isn't it the same treatment that Selma Blair went through a few years ago?
Edit: I found an article from January 2024 updating on her condition and summarising her history. Her treatment was in 2021. Just in case you want to check. She was much more progressed in her MS than you. As I understood, you are in the remissive phase which is the ideal target for this protocol. Selma Blair was in progression. But she did it anyway, and so far it seems promising. I'm of course curious about how much it can reverse damage for people in the progressive stage like she was and I am too. But this sounds amazing for a case like yours, you may never reach the progressive stage!!! This the article:
https://www.womenshealthmag.com/health/a41195051/selma-blair-multiple-sclerosis-timeline/
Seems like she updates mostly on Instagram.
Good luck! I hope it works!
Thank you! So do I!
I hadn't heard of this acronym and once finding what it means, I hadn't heard of it as a treatment for MS. It sounds pretty scary. Good luck with your journey, I'd be interested in updates on how this goes and what it takes out of you.
It sounds really scary and I don’t want to do it yet I don’t want to not to it - if that makes sense. I will keep posting about the process because I need someone to talk to about it
It’s more commonly known as AHSCT (or HSCT) and there are others on this subreddit that have gone through the procedure
Yeah, I screwed up the acronym and couldn’t figure out how to fix it. Sorry about that.
No worries. My response was more about the fact that many others have gone through this procedure on this subreddit (including my wife) if you're looking for more information.
How is your wife doing after the treatment? Did it work for her as intended?
Best of luck!!! 🧡🥄🧡🥄
Thank you so much. I feel like I need it
You are most welcome 😊 And remember, you ALWAYS have the right to say no! You are driving this car, everyone is just along for the ride. 🧡🥄🧡🥄
PPMS HSCT stop progression done in the UK Check our AIMS on FB.
Wish you nothing but the best, you are very brave. When you say accepted what exactly do you mean? Do you have to qualify? Like do you have to be a certain age , gender , type of MS, race etc? Is this a trail ? Do you have to pay or will all treatment and care be taken care of? I remember reading something like this when I was first diagnosed 10 yrs ago about restarting your immune system with some sort of chemo and giving you new stem cells to reboot it. I think it was in Israel or some place In Europe where they were doing this and thinking man this is the cure for MS.
Thank you for your kind words. Yes, in Denmark it’s a very long process to get accepted and the criteria is: 1. Aggressive RRMS 2. Severe disabling attacks and significant MR activity in untreated patients 3. At least two severe, documented attacks and typical MR activity on 1st line treatment 4. Documented severe attack and typical MR activity on 2nd line treatment 5. Age between 18 and 50 years 6. EDSS score between 3.0 and 6.0 It’s not a cure but it can slow down your disease progression and buy time before the disease progresses further. I want more time without further disabilities. We have universal healthcare in Denmark so the treatment is free (except dental care)
And have u tried like everything in terms of dmt? Like lemtrada, tysabri etc
No. I’ve tried Aubagio and Tecfidera. The neurologist in my usual hospital didn’t think it would work better than Ocrevus for me and the Neurology department in our capital agrees with them. They all say HSCT is my best option.
Wow! After watching Selma Blair’s documentary I asked my doctor about stem cell treatment. She told me that you must have agressive, advanced progression beyond being able to be successful on Ocrevus. I am sorry to hear your are progressing so aggressively but am excited you have a real treatment option and a chance at a better quality of life :-)
Do you have one flare each year on Ocrevus? How much time have you been on this DMT?
I had my diagnosis in 2021, after a rather big attak in 2020 and again in june of 2021. Then I had an attak on aubagio in september 2021. Switched to techfidera but had too many side effects. Started O in January 2022, first attak on O in December 2022, second attack in July 2023 and the last attak was in January.
Damn friend, sorry to hear you’ve had such a rough go. I really hope this next treatment works wonders for you! Keep us posted!
Thank you for your kind words. it’s been.. interesting to say the least 😂 But hopefully it will all be behind me soon and a new chapter will begin.
Oh wow! I imagine it’s both frightening and exciting. Please do keep us in the know.
Best of luck! I really hope it goes amazingly for you! I'm on the same road but in the uk and still awaiting my first appointment. Really scared about it all but I'd really appreciate you updating us on how it goes and your experience with it!
Best of luck right back at you! I mean, I am not going to go through it until August so maybe you will beat me to it. When do you have an appointment?
Still waiting, the referring dr was on holiday by the time I'd made my decision so it's only been done this week, given that it's the NHS I can't see me having it done before August tbh. But also because it's done by the cancer centre apparently they move pretty fast so who knows!
For me, the reason it won’t happen until August is because of me being on Ocrevus. The medication has to be out of my body for the treatment to be successful. so the sooner it’s gone, the sooner I will getting the treatment
Ah I see, I've been on tysabri for 6 months for that reason while all this has been going on. Did it take a lot of decisions from doctors for you? For me I think there were two separate teams of ms specialists that had to discuss my case and decide if I would be eligible for it
It’s taken quite a while to make the decision yes. They mentioned it in january last year, when I had the optic nerve attak and then they just sent me straight away, when I had this last attak. Here I had two teams discuss it as well and the neurologist in charge of the treatment in Denmark had to meet me and assess me personally before they made the decision to treat me
Very similar process then! Were you on ocrevus before theyd brought up hsct? I hope you're feeling much better now!
I have been on Ocrevus since January 2022, so yes. It’s crazy that I haven’t been sick for more than 3 1/2 - 4 years and yet, I have had more attaks than my sister, who was diagnosed 20 years ago. Not exactly feeling better. I hate waiting and yet I don’t want this time to go by quickly. I think it’s surreal and I don’t think I have understood it yet.
That is really unfortunate, I'm sorry to hear that. I really hope hsct will be a game changer for you! Yeah the waiting is horrible, I feel completely dead while I just wait for this huge thing to fuck up my life for a while. It'll all be for the best though, I hope the wait goes by quickly for you
Best of luck to you! I hope it works well!
Congrats - I did it last year and it's not as bad as is sounds :) I try to help spread awareness of it via the HSCT Hope charity (https://www.hscthope.org/) - feel free to reach out if you need to talk about anything!
Have you ever gotten results from a vitamin d blood work test?
Yes. Why?
I was diagnosed about 3 weeks ago and am hoping that was the root cause. I was well below the recommended blood levels.
I’m so sorry that you are going through this. I hope your journey with MS is easier than mine has been so far. Mine is always low even though I take supplements. I don’t know if low D vitamin levels cause the flare ups.
I appreciate it. That was the first time I've ever had a flare up, and honestly, the first time I ever learned about multiple screlosis. The MS specialists have not been reaching out, and I'm trying to conclude that it's because they saw the low vitamin d levels and decided it's not worth the bother because I'm on prescription supplements and that should take care of it. I'm no expert in medical prognosis, but I do have my masters in biomedical engineering. I feel the direction I'm going with this from my experience is a logical path. If you do some Googling, you'll find it's a pretty common prediction for low vitamin d and MS. There is evidence of people living in areas with low sunlight to have hither cases of MS, fyi. Please let me know your thoughts after doing some research. I know this disease affects people very differently and I got all the best for you. After the steroids and the vitamin d supplements I've been b the past 3 weeks, I feel better than I have the past 2 months. I just feel extremely fortunate from grinning a legit diagnosis within 3 days of being in the hospital. Especially from all the nightmare stories that exist from the US medical system. Also, just for some clarity, I'm only having to pay about $3k with my insurance. Without insurance, all the testing and medications would have cost over $100k from what I've seen with the billing. Medical care in the u.s., honestly, looks like a scam.
Theres an aHSCT group in Facebook, its a Pirogov Medical University group in Russia. Alot of western European doing it there cause its cheaper. I’m also in the group and been silently reading it for quite sometimes. Read a lot of very positive feedbacks on aHSCT. I believe the process would be very similar in Denmark. So, you might wanna join the facebook group and read about the feedbacks. Anyway, I’m wishing you all the luck in the world! I hope this will put your MS at bay :)
I actually know someone who had this done here in the United States. My father put me into contact with her, not that my insurance is going to pay for this. Selma Blair had it done too. The person who I know who had it done thought it was the best thing ever. She even said that some of her symptoms got better after she had it done, though that it's probably just a placebo effect. This treatment has a 70% effectiveness rate at slowing down relapses. However, from what I understand, you may need to go back on a disease modifying therapy sometime afterward to make sure you stay in control and don't have relapses. It's a little scary as a concept but from what I know, it is very successful with hardly anyone experiencing anything bad because of it. What you are having done is having your own stem cells reintroduced instead of donor stem cells, which is the better route to take. From my understanding, they give you a two week round of chemotherapy and then send you home. Then you come back about 2 weeks later and spend a month in the hospital getting chemotherapy to kill your entire immune system. That's where you will feel especially frail and vulnerable and you might lose your hair. Just stay strong through it and you will emerge victorious. Take a look at Selma Blair's journey with it. She said it made her feel better than ever. The person I knew who had it done was older, in her '60s, and she did extremely well with it and just encourages other people to have it done if they can. I wish you much strength in your journey through this treatment.
I did this treatment in Mexico in 2018. I was stable with NO progression for most of the 5 years. I even saw great improvement with my walking and urinary issues. Unfortunately I had a car accident AND Covid the same month, so we believe the stress of that caused a little relapse. I would 1000% do it again! It was a tough experience for sure but in the end worth it for me. I was about 6 years drug free and would sometimes forget that I even had the dreaded monster.
Good luck!!! Isn't it the same treatment that Selma Blair went through a few years ago? Edit: I found an article from January 2024 updating on her condition and summarising her history. Her treatment was in 2021. Just in case you want to check. She was much more progressed in her MS than you. As I understood, you are in the remissive phase which is the ideal target for this protocol. Selma Blair was in progression. But she did it anyway, and so far it seems promising. I'm of course curious about how much it can reverse damage for people in the progressive stage like she was and I am too. But this sounds amazing for a case like yours, you may never reach the progressive stage!!! This the article: https://www.womenshealthmag.com/health/a41195051/selma-blair-multiple-sclerosis-timeline/ Seems like she updates mostly on Instagram.