Multiple sclerosis (MS) can be an extremely debilitating disease that ultimately is fatal in some patients and reduces life expectancy and quality overall substantially. An MS patient named Caroline Wyatt, who works at the BBC, had the courage to open up in full detail on the BBC about having MS, her experience getting an experimental treatment of stem cells in Mexico, and how she is doing now. It’s a powerful new piece that brings home the complexities of having MS and of getting this hopeful, but risky stem cell therapy.
While some patients’ forms of MS are manageable, Wyatt’s MS was extreme. It was severely affecting her health as well as her life overall and currently available approaches such as the standard of care drugs did not help. It’s understandable then that she was considering various other options including things that aren’t yet approved such as stem cells. I’ve written extensively about stem cells for MS in the past on this blog.
There’s a lot of hope and hype out there on stem cells for MS. It’s a complicated mixture to navigate to have a clear sense of weighing risks versus benefits. Wyatt did some research and was interested in a new approach to MS with stem cells whereby chemotherapy is used to eliminate the autoreactive immune system and in a sense “reboot” the immune system with putting back in earlier harvested hematopoietic stem cells (HSC).
She wasn’t eligible for participation in formal clinical trials of this new approach in the US or UK, but a place in Mexico is doing what seems to be very much the same kind of clinical experiment, apparently with different inclusion/exclusion criteria. Wyatt was able to get this HSC transplant (HSCT) at a place called Clinica Ruiz in Puebla, Mexico.
(Note, that while Wyatt did not have any bad experiences in Mexico with the HSCT procedure itself, getting an unproven stem cell treatment outside of one’s home country more generally is often likely to be a high-risk thing to do for various conditions. One patient who got a stem cell treatment in Mexico as well as in a couple other international locales ended up with a tumor on his spine. Getting unproven stem cells in the U.S. can also be risky and patients have been hurt including a number who were blinded)
Getting back to the HSCT for MS specifically, it is a very difficult thing to go through for patients with multiple rounds of chemo, stem cell isolation, stem cell infusion, and recovery from the procedure itself. I recommend reading her whole article as it is very interesting and informative about the process. Wyatt is also so open about her experiences with MS as well as what she went through in the process and since.
Wyatt says that she’s not sure if she’s had a net benefit or not from getting the HSCT. It is clear that there are long-lasting side effects and challenges from her HSCT, but there is also hope. For instance, she wrote that her latest brain scan shows no further progression of the disease. Other patients have self-reported a range of experiences after this kind of HSCT for MS. Some patients fared worse (a few have died) and others reported more positive outcomes than Wyatt.
Wyatt described where she’s at post-transplant this way:
“Today, I quite often feel worse than I did before HSCT.
I still need to rest frequently during the day, and when I use my energy for work, I have none left for anything else at all.
But there are sunnier days when I feel a little better than I did immediately before the treatment, and then my hopes soar.”
And looking to the future:
“But I am an optimist, and shall remain so while my immune system finishes reconstituting itself fully by the end of this year, some two years after I started treatment.”
I wish Wyatt all the best. You can follow her on Twitter here:@CarolineWyatt.
At this point for HSCT for MS overall, the jury is still out on whether this kind of new approach will definitely be safe enough and effective beyond the standard of care. A recent report from a meeting brings new hope and we can anticipate a published, peer-reviewed paper on the trial perhaps later this year or in 2019. At that point we’ll have a much better understanding of the big picture.