HSCT & MS: Some Basics and My Thoughts
Last updated: June 2023
Hope. When you live with a chronic illness like multiple sclerosis, hope can keep you going. New treatments, especially when they aren’t yet available to a majority of people, always inspire hope. These days, one such treatment that people are hopeful for is HSCT. There are many that are holding onto this hope but don’t fully understand the details of the procedure. I feel like we are often seeing headlines about experiences with HSCT and studies being conducted on HSCT, but we don't have a clear explanation of what it really is. So, I thought I’d try to explain it in a layman's/distilled version that is (hopefully) easy to understand. I also wanted to give my thoughts on the procedure.
What is HSCT?
HSCT stands for Hematopoietic Stem Cell Transplantation. You may also see it referred to as AHSCT where the “A” stands for “autologous,” simply meaning that they are taking the stem cells from you and not using someone else's. The goal of the procedure is to harvest stem cells, which are cells that can reproduce to create more of the same or different specialized cells. Think of them as almost a blank slate that can be guided to create whichever new type of cell is needed. These cells are collected from bone marrow or the blood.1,3
These cells are then stored while the person’s immune system is essentially erased, at which point the cells are added back with the goal that they rebuild the person’s immune system. A super simplified way of looking at HSCT is that it’s a procedure to recreate a person’s immune system using their own stem cells. As you likely know, with multiple sclerosis, it’s our own immune system that has turned on us, treating the myelin surrounding our nerves as a foreign invader that must be eliminated, just as it would normally do to a virus.3
The process of undergoing HSCT for MS
These are the kind of details that I think a lot of folks don’t really know. As you will see, HSCT is far from simple:3
- A patient will typically be given chemotherapy to stimulate the growth of stem cells, after which point they will be harvested and stored.
- After that, the patient is hospitalized and given a powerful mix of chemotherapies, with the goal being to kill or heavily suppress the immune cells in their body.
- With the immune system eliminated, the patient then has their stem cells reintroduced into their bloodstream.
- The patient is then administered antibiotics and other medications to combat infection.
- The patient waits, isolated in the hospital at first, while the immune system slowly rebuilds itself.
Full recovery from HSCT can take 3 to 6 months, or even more than a year, as it is an intense procedure.3
Results of HSCT
If all of that goes well, you have a new immune system that is no longer attacking your own body. That’s pretty amazing, right? To some, it might even sound like the “C” word (Cure! I mean cure). I suppose that depends on your definition of a cure. While this can be great at halting disease activity, it does not repair the damage that the disease has already done. It does not do what a true cure would do, which is to repair myelin. That’s a pretty important thing to know about this procedure.6
Risks of HSCT
While the results can be amazing, it’s important to look at the risks. I think just looking at the steps involved gives you an idea of some of these risks. You are subjecting your body to powerful chemotherapy and antibiotics, and you may be enduring a significant amount of time with no immune system, meaning there is no way for your body to fight an infection on its own. Some other potential side effects are an increased, long-term risk of developing infections, an increased risk of developing cancer and autoimmune conditions, such as thyroiditis, plus early menopause and fertility problems.7
The chemotherapy and antibiotics pose their own side effect risks as well - not just hair loss, but fevers, and nausea. Our own Dave Bexfield, who has survived HSCT, even noted that his consent form listed his chances of dying as 1 in 20. Even if that’s improved since he underwent the procedure in 2010, the chance of death (like the other risks) is not insignificant. I’m often shocked when people are excited about HSCT but will then balk at the side effects of other disease-modifying treatments. Make no mistake: of the treatments out there, HSCT is a risky one.7
My thoughts about HSCT
People send me success stories and ask me about HSCT all the time and are shocked when I’m quick to dismiss it. Currently, Tysabri has done a pretty good job of slowing down/halting my disease progression (and, if someday it fails, I’d still want to try Ocrevus before HSCT). If I exhausted all other treatments, then sure. I’m just not a good candidate for the procedure because again, it carries a lot of risk for the same result (if it were to work) as my current medication.
In the grand scheme of things, HSCT is still pretty new; it’s still being studied (just one reason that it’s not yet covered by most insurances).5 There is new data coming in from studies all the time. I've tried to be cautious with statistics here because of that.
We can be hopeful while being realistic about HSCT
I’ve linked to my sources within this article (and you can also find them in the References section below), but please keep in mind that depending on when you read this, those items could be outdated. That’s just how new and evolving the procedure is. The future is bright for HSCT, but right now, it might not be the best option for some. That doesn’t mean we can’t still have some excitement and hope for it, but it’s also important to be realistic with regards to our own illness.
Thanks so much for reading and always feel free to share!
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