Selma Blair is doing HSCT for MS

[YaddaYaddaHeyYeah]

Apparently Selma Blair is going to do HSCT at Northwestern under Dr Burt for her MS
www.instagram.com/p/BytK0sTnRAG/

www.instagram.com/p/BySwXA3Hfy6/

MS = Multiple Sclerosis

HSCT = Hematopoietic stem cell transplantation

Basically MS is an auto immune problem. So what they do is give you 4 doses of chemo, just enough to kill your faulty immune system. Then they take your own stem cells (so there is no chance of rejection. They give you shots to accelerate the growth of them), and give them back to you so you grow a new MS free immune system.

I’m thrilled for her. I did the same 2.5 years ago and it was the best thing I’ve ever done.

As she is very famous and she’s openly doing it, it’s going to really highlight it and I’m really happy about that. I think more celebs have probably done it but they don’t talk about it.

I did it privately and it cost $50K. Most people fund raise if they can’t self fund. There's also a pay it forward attitude with the people that have done it. A lot of the time if someone has done the treatment and has fundraising money left over then they will pass it on to someone else that is doing it.

Some people get on trials. To get on a trial you usually have to have tried and failed 2 of the DMT drugs. I remember about 3 years ago going through the JACIE (Worldwide HSCT accredited facilities) list and emailing everyone. There were pages of it. Generally they treated cancer patients but because HSCT for MS was getting more press quite a few said they would be offering it to MS patients in the next few years.

It’s not a new treatment. I have met and spoken to doctors that have been doing it since the early 90’s, that keep in touch with their patients and those patients are still doing well.

It has an 80% success rate and 40% will see some improvement in their symptoms, but the aim is to stop progression.

Risks - You could be sick from the chemo. You only have 4 doses of low doses of chemo, just enough to kill the bad immune system, so it's a lot less than the average person has when undergoing cancer treatment.

The DMT's carry a lot of risks too. So it's about choice. For me personally, I was looking for a cure/a stop. So a DMT felt like putting a band aid on a gaping wound IYSWIM, so HSCT was the choice I made.

I started a thread earlier about this but mumsnet took it down because on one post I had put a link to a clinic where people could find out more information if they wanted to.

I have not included any links in this post as I don’t want it deleted again. I have tried to answer questions that other people asked on it though.

I really hope that Selma Blair is in the 80%. I wish her all the luck in the world.

Selma Blair is very open about MS and how it has affected her. She did an interview here

[Tesbel]

Thanks ibizama will pass it on 💝

[Likethebattle]

@DaisyDreaming i’m so sorry I watched my dad die from progressive MS.

[DisgraceToTheYChromosome]

Hope at last! I lost someone very dear to me from MS, and watching someone fade over 2 decades was just horrible.

[Ibizama]

Tesbel, tell her to join the HSCT FB pages. Full of info

[Tesbel]

Very interested in this. I have a very close family member that is seriously considering having the treatment done so keen to read all that I can about it. Thanks for posting OP.

[YaddaYaddaHeyYeah]

www.instagram.com/p/B0WCYC6HOyp/

Wow. I can wait to read her interviews about it. Well done Selma :)

[YaddaYaddaHeyYeah]

I've never heard of CIDP @weegiemum I just googled it. Are you able to get on a trial? In my googling a few links down it said that Northwestern are doing a trial. I imagine under Dr Burt. He's quite famous in the HSCT world.

[weegiemum]

Really interested in this. I have a very rare (much, much rarer than MS, only 50 diagnoses a year in the uk) condition called CIDP which also responds to HSCT though my consultant won't refer me as there aren't enough cases so far. I can't afford the USA, and we have seriously considered a Mexican clinic, as the longer I have this the more my nerve damage becomes permanent and the harder it is to reverse.

I wish her all the best. I wish someone well known with my condition would do the same, but it's statistically very unlikely.

[YaddaYaddaHeyYeah]

Not really, given the conversation I had with MN. I'm not posting any links.

If you want information then google. It's easy enough to find.

[Loopytiles]

No, but the “too scared to post links” comment was silly.

[YaddaYaddaHeyYeah]

I haven't posted the link to any clinic on this post.

[Loopytiles]

Not saying your recommended clinic wasn’t reputable, it may well be fantastic.

[Loopytiles]

Oh come on OP, you posted a link to an expensive clinic overseas. Advertising in posts is against MN rules, for good reason, especially here when there is an obvious risk of people with serious health conditions being financially ripped off, or worse. Some clinics are not reputable.

links to sources such as doctors’ professional organisations, NHS and specialist charities are entirely different.

[YaddaYaddaHeyYeah]

That's shit @bellinisurge I hope you had help.

@Loopytiles I'm too scared to post any links in case MN deletes the whole thread.

[Loopytiles]

“Going abroad

If you’re not eligible for HSCT on the NHS, it’s possible to get the treatment abroad. There are sites in Mexico, Russia and India that we know offer the treatment. This option is very expensive, and not always safe, as not all clinics work to the same safety standards as the UK. There is also no guarantee that the treatment will work. We would urge anyone considering going abroad for treatment to first talk their options through with their MS nurse or neurologist”

[ChristineBaskets]

This might seem a frivolous question but does HSCT always make patients lose their hair?

I've had MS for 15 years and have learned to be very hesitant to celebrate any 'cures' or miracle treatments as I have seen many before come to nothing. At one time I was convinced that CCSVI was the answer to all my prayers. From what I've read HSCT results are very mixed.

[Loopytiles]

www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/hsct#

UK MS Society

[Loopytiles]

I wish Selma Blair and others with MS well.

Where is your 80% statistic from?

What are the views of the relevant professional organisations (eg the Royal Colleges in the Uk) and health institutions (eg what was NICE in the UK) on the treatment?

[bellinisurge]

It was the infection I got from poor maternity care that triggered my only major relapse so far. With a newborn.

[YaddaYaddaHeyYeah]

And pregnancy actually helps MS symptoms it’s afterwards you need to be careful. I felt great MS wise in all my four pregnancies.

Unless it's the trigger for it in the first place. I guess if I still had active RRMS and got pregnant it might help it for the duration of pregnancy, but it my case that wasn't the way it happened.

[girlsyearapart]

I persevered for around 6 months but the flushing and sickness never went away 😔

[Yogagirl123]

The first few days on Tecfidera were terrible, sick, flushing. Was ready to give up, took it for another 24hrs and turned the corner, been on it nearly 4 years now, occasionally flush but other than that fine. Have annual MRI’s and touching wood seem to be controlling the MS.

[girlsyearapart]

yoga how are you doing on Tecfidera? I really didn’t get on with it.

And pregnancy actually helps MS symptoms it’s afterwards you need to be careful. I felt great MS wise in all my four pregnancies.

[Yogagirl123]

I also have RRMS, currently on Tecfidera, originally on Rebif.

I have looked at HSCT, but what I can’t get my head around, and perhaps I am wrong, happy to be corrected but my understanding is that currently no one knows why MS develops, so surely if that element is not eradicated, even with a re-boot of the immune system MS may return at a later date?

I really hope HSCT works for people, I have read about Caroline Wyatt, sadly didn’t work in her case, and also of fatalities connected to this treatment, usually due to infection. It’s a major treatment not without risk, but the same could be said for DMD’s, I know nothing is risk free. But is HSCT a cure, only time will tell. I truly hope it is.

I agree that anything that raises the profile of MS is a good thing.

[YaddaYaddaHeyYeah]

People can do what they want with their lives, money and health.

This is exactly what @cherrytreecandy and I were saying before. It's about choice. And people being able to make fully informed choices about their treatment of the disease they have is important. All too often neurologists can push people into treatments (been there myself), so having knowledge of all treatments is key.

Selma Blair has a big voice.