Patient’s Powerful Story on Multiple sclerosis and Getting Experimental Stem Cells

Caroline Wyatt, BBC, photo from Twitter
Caroline Wyatt, BBC, photo from Twitter

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.

16 thoughts on “Patient’s Powerful Story on Multiple sclerosis and Getting Experimental Stem Cells”

  1. All currently FDA approved therapies were at one time not approved, but that doesn’t mean they are not effective. HSCT is not an experiment, as it is a well understood routine legitimate medical procedure that has been performed more than 2 million times in a clinical setting since 1967, and is currently successfully performed more than 50,000 times every year all around the world. Additionally, autologous HSCT performed for autoimmune disease (not to be confused with allogeneic HSCT performed for cancer) is an extremely safe medical procedure, with a consistently documented TRM safety profile of less than <0.4%, safer than regularly driving / riding in an automobile. It is important to understand that "experimental" does not mean "unproven." HSCT has already completed transplantation of a phase III randomized controlled patient population showing unequivocal results of efficacy superior to every single other "approved" therapy. This is the gold standard of medically valid scientific evidence and is the immediate step prior to FDA approval. Bad mouthing or casting doubt upon HSCT as a treatment for autoimmune disease does not help patients in need of a solution to their health needs. . . .

  2. I had HSCT for MS this past June 2018 performed in Puebla, Mexico by Dr. Guillermo Arguelles Ruiz. Dr. Ruiz is #42 of the top 50 doctors in the world. I am now recovering and rebuilding a brand new immune system without the memory of MS. I have had several immediate improvements and continue to improve. Having HSCT done to give me the only treatment for a chance to halt my uncurable disease progression, was MY personal choice and decision. I will personally do everything in my power to have this ridiculous article removed. You have clearly not researched the positive effects of HSCT for MS. Why dont you reach out to those that are currently in recovery, like myself to get first hand experience. All of us fully understand that you have monetary interest for yourself by writing and publishing this article filled with false information. We are also aware of the bullions of dollars the FDA and physicians in the US stand to loose if HSCT for MS and auto immune disease is approved as an option and becomes standard of care. In the meantime, more people will choose to advocate for themselves, take control of their healthcare and go outside of the US to have it performed. I think you are an idiot. Why should you or anyone else have any say as to whether or not I should continue to have disability and disease progression so you can benefit!!! Sometimes all it takes is one voice! but there are many voices, and people like myself that are improving from having HSCT for MS.

    Bonnie McKenzie
    Rootstown, Ohio

    1. @Bonnie,
      We clearly disagree on the current state of HSCT for MS, but another difference is that while I respect patients, you resort to name calling it seems.
      Also, I do not have any say in whether you or anyone else gets a particular therapy. I’m just stating my opinion on my blog. Finally, I don’t see how I can benefit as you suggest.

    2. Hello Bonnie, any chance you can give more details on the procedure? You said you are rebuilding a brand new immune system without the memory of MS, so does that mean you had treatment to kill all of the “bad” stem cells to stop production of autoimmune T cells? Also, where did the new stem cells come from for your HTSC – from an HLA matched relative? Thanks for any insight.

  3. What a poorly researched article! Even very rudimentary research will reveal that HSCT (Haemotopoietic Stem Cell Transplantation) is NOT a stem cell therapy. HSCT is a chemotherapy procedure which is supported by a stem cell transplant. Nor is HSCT experimental – it has been used as a treatment for MS and other autoimmune disorders for many years. Please don’t write about things without the correct facts – it’s such a dishonest thing to do, and could be very harmful.

    1. @Gwen, I guess it depends on how one defines a stem cell therapy. I see it as at a minimum in part a stem cell therapy. And it is experimental. It is, for instance, not approved by the FDA for autoimmune conditions and conclusive data have not been published in peer-reviewed journals from RCTs.

  4. I don’t know anything about Paul or this blog, but I do know that HSCT isn’t experimental or risky. According to numerous studies it has a 70% efficacy rate compared to an average of 40% for FDA approved MS DM drugs. A quick read of people reporting on their experience with facilities outside the US including Mexico, indicates that the care they received there was far better than any healthcare experience they’ve had in the States. The out of pocket cost in the States is around $315K. The cost in the 17 other countries where it is done ranges from $50K-$120K.

    The author of this article doesn’t indicate that the subject had any complaints or concerns about her experience in Mexico. nor does he quote her about her experience. Further, there is no citation that HSCT is either “unproven” or that “stem cell treatment outside of one’s home country more generally is often likely to be a high-risk thing to do”.

    I’m confused about the authors rational for making those claims. They seem factually inconsistent with the data that is readily accessible through papers published on HSCT.

    1. @Ken, HSCT for MS and other autoimmune conditions is currently experimental and risky. Mostly data from careful clinical trials have not been published in peer reviewed journals yet that I have seen. What papers did you have in mind that you mentioned? There have been just some presentations and anecdotal reports.

  5. Somewhat selective reporting! To just cherry pick sections of her longer article is clearly ridiculous. Either make it clear you have lifted only the bits that suit your troublesome agenda, or print the original arrival in it’s entirety. Poor reporting. Must try harder. 1/10 at best. See me afterschool…

  6. I also went to Clinic Ruiz to get HSCT done for my MS because I didn’t fit the strict trial criteria in the US. The hematologist there is one of the 50 top graduates from Mayo and has over 40 years of experience doing HSCT, not 2 as this article states. The hospital has been treating international patients for 2 years is what it should have said.
    HSCT is the same chemotherapy procedure that is done for Leukemia and Lymphoma and has been shown to stop the progression of MS in almost 90% of cases in over 18 years years of FDA trials. Other countries (that don t have insane pharmaceutical costs/the FDA/Lobbyists/etc) have been doing this for years and hundreds, if not thousands by now, of people have had HSCT for MS.
    I’m not sure where the author got his information on “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” fact but it’s not from Puebla like he suggests. That might have happened at a scam stem cell treatment place, but it didn’t happen at Clinica Ruiz. HSCT isn’t a stem cell treatment. It is a chemotherapy procedure that uses your stem cells to reboot your immune system. There are lots of stem cell places popping up that don’t use chemo, and had the author done a little research, he could have educated the reader on the difference between the two. Also, I just want to say.. at no time did I feel unsafe or afraid in Puebla. The people were so nice and the medical care was better than most of the care that I have had in the US!
    Any way, I am doing fantastic two years post my treatment. The progression has been stopped and now I get better every day instead of worse. I’ll have to check with Caroline because I thought she wrote a update recently and she was doing really good. If you have MS and want to research HSCT, join this Facebook group to learn everything you need to know and connect with real people who have done it and read some amazing stories!

  7. Michael Stevens

    Paul only searches for and posts what he can to demonize stem cell treatments. He only supports embryonic and fetal stem cell “research” done in the name of profits for his friends who have patents. He does not support people to choose for themselves even if they have a terminal disease with no other cure. He is myopic and one-sided and all of this is a shame because it’s a waste of a good mind. Paul is to stem cells what Scott Pruitt is to the environment. I will be surprised if Paul even allows a contrarian view to be posted.

    1. @Michael,
      I’ve been called a lot of things during the 8 years I’ve been doing this blog, but comparing me to Scott Pruitt is unique!

  8. It is a moving story… In my humble opinion and experience as a chronic pain clinician, patient’s perspective is often neglected. And this perspective doesn’t accept proofs, evidence and risks. And very often “the lack of evidence is not the evidence of lack”. Patients deserve so called “unproven “ treatments, providing the patient’s safety is not compromised. And good regulations are required in order to achieve that. Regulations which will allow new treatments, sometimes with no sound evidence. Othrewise dubious clinics will mushroom putting patients in risks far greater than good and permitting regulations.

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