“I’ve recently got diagnosed with RRMS and I’ve stumbled across some information about HSCT. I’m considering asking my specialist about it. I’m interested in the treatment if it’s available to me.”
HSCT is an intense MS treatment similar to chemotherapy. Not every MSer is eligible for or will have access to HSCT; your MS team will help you understand your options.
Article medically reviewed by Karen Vernon an MS Nursing Specialist at Salford Royal Foundation Trust, UK.
Many people living with multiple sclerosis will be eligible for treatment for MS in the form of Disease Modifying Therapies (DMTs). DMTs are treatments that can help to slow down the progression of multiple sclerosis. Though the effectiveness of DMTs can vary from person to person, they can help to reduce the number of, and severity of, any relapses that occur. You can learn more about treatment for MS in our guide.
But, DMTs aren’t the only form of treatment available if you have MS. HSCT is a different type of treatment that’s an option – although it’s not suitable for everyone with multiple sclerosis, and it’s not easily accessible for all.
What is HSCT? It stands for Haematopoietic Stem Cell Transplantation, though it’s also known as AHSCT, which adds Autologous to the title. It’s an intense form of treatment that’s similar to chemotherapy, and aims to essentially wipe out the immune system before replacing and regrowing it.
‘HSCT Saved My Life’ - read this blog from Shift.ms member @dagamundo, who shares her personal journey through HSCT treatment
HSCT – or AHSCT – works by targeting stem cells in the body. The process involves several stages and can take months, from start to finish, including the recovery period.
With multiple sclerosis, the body’s immune system attacks the nervous system. So, HSCT treatment works to reboot or replace, and then regrow, the immune system by removing harmful cells and adding new cells.
First, stem cells found in bone marrow are removed, and moved into your bloodstream, where they can be collected. The stem cells are then collected, and stored, and kept frozen until needed later in the procedure.
There is a stage of chemotherapy, which removes those cells that are harmful and associated with multiple sclerosis symptoms. With HSCT, there are two different types of chemotherapy:
Myeloablative chemotherapy – this completely removes the cells, and is high intensity
Non-myeloablative chemotherapy – this is lower intensity and partially removes the cells
When that is complete, the stem cells that were collected and frozen earlier in the process are re-introduced to the body via infusion. Those stem cells then develop into new immune cells.
The last stage is all about recovery. HSCT is an intense treatment and one that takes time to recover fully from. The recommended recovery period is anywhere between three and six months, though it might be longer for some. Before undergoing HSCT, you should make plans to prepare for extensive time off following treatment.
“My research on HSCT began immediately. I poured over published papers in medical journals, while educating myself by watching countless neurology and haematology conference videos posted on YouTube.” @dagamundo
HSCT isn’t suitable for everyone – and it’s not available for everyone, either. Before you even go through the process of being accepted for HSCT, you need to give serious and lengthy consideration to whether you want to go for it.
As with all significant medical procedures, there are risks involved with HSCT. One of the highest risks is that of infection – because your immune system has effectively been removed and rebuilt, you’re especially vulnerable for a period of time. You might have to stay in isolation for a time, as you’re more susceptible to infection from viruses.
Fatigue, mobility issues and hair loss – as is typical with chemotherapy – are other possible side effects. HSCT treatment might also create fertility issues, and affect pregnancy, menopause and contraception.
“It’s a massive decision to make and very personal, but talk to your neurologists before you make any decisions rather than going on YouTube and watching videos.” @ChiMum
As well as being a big decision to make on a personal level, you’ll need to be assessed by a medical professional before starting HSCT for MS. You can’t just start HSCT treatment without being put forward.
Eligibility criteria may vary slightly depending on which hospital or centre offers HSCT. Centres need to be accredited and establish eligibility criteria; this criteria may differ between centres but in the UK this will be based on guidance from the EBMT (European Society for Blood and Marrow Transplantation).
It’s believed that HSCT is most effective for someone who’s showing signs of active inflammation – with new or active lesions. If you’re having relapses despite being on a DMT or are deemed to have aggressive MS, you may be referred and assessed for HSCT treatment.
HSCT can be offered if you have relapsing MS, and progressive MS – both primary and secondary. You’re more likely to be considered for HSCT if the condition is still in relatively early stages; not in terms of time as much as the severity of your MS. If your multiple sclerosis has caused significant disability already, HSCT may not be offered.
You can already be on a course of DMTs and qualify for HSCT treatment. In fact, to be considered, you usually need to still be experiencing relapses despite being on a DMT; HSCT is rarely considered the first treatment option. When someone has been accepted for HSCT treatment their care will be shared between the transplant team and their own neurology team, so more people will be involved in their care long term.
If you think HSCT could benefit you, start a conversation with your MS nurse; you should also discuss it with your neurologist. Step up the research, and read as much about HSCT for MS as you can. We’ve just provided an overview here, but there are clinical trials to read about, and more in-depth medical studies available, too. Of course, you can also ask specific questions about HSCT – as well as other types of MS treatment – on the Shift.ms forum, and talk to other members about their own experiences.