AIMS interviewed Dr Ruiz in association with the MS Warrior Podcast and Nic Haste to ask for his response to various myths being told to MS patients about traveling abroad for HSCT and specifically in Mexico.
We will be providing a transcript of this podcast so you can dip in and out of it to find the info you want, but in the meantime, here is the full list of questions!
We first spoke to Dr Ruiz about the fact that he is a Fellow of the Royal College of Physicians (both in Glasgow and London). This is an accolade bestowed on only the very best doctors, which should indicate his credentials.
We then asked him about some of the misapprehensions about HSCT in Mexico, along with some questions about the process.
• “It’s not proper chemotherapy in Mexico - it’s HSCT-lite.” What is the amount of chemo used in Mexico and how does that compare to other centres? Why do you do it that way?
• “The hospitals in Mexico are filthy - they have dirt floors”
• “Rituximab is less effective than rATG”
• “Non-Myelo isn’t as effective as Myeloablative”
• “You don’t even know that they’re really giving you stem cells”
• “HSCT in Mexico isn’t regulated”
• “The cells need to be frozen but Mexico don’t do that”
• “They don’t follow up with all the patients”
• “Mexico will treat anyone if they have the money. There is no screening.”
• “There is no peer reviewed data from Mexico”
• What are the chances of getting worse after HSCT. Is it reasonable to assume you’ll get worse before you get better - how long can you expect this to last?
• “HSCT only works when there are active lesions”
• “Non myeloablative is a waste of time and money. Only myeloablative HSCT is worthwhile”
• “Over 50’s can’t have HSCT”
• Have you treated an neurologists with MS or autoimmune disease? Where from?
• Are the Mexico clinics both FACT accredited? (FACT is now synonymous with JACIE)
• People are worried about aftercare and needing Rituximab follow ups
• “The bloods of people returning from Mexico are normal, which shows that they haven’t had the treatment at all.”
• Washouts and how they might affect HSCT… especially IRT treatments like Cladribine which stay in your system for such a long time. Does this affect the treatment or recovery?
• A lot of people wish to avoid Cyclophosphamide due to infertility and cancer risks. What can Dr Ruiz say about these risks? What is the actual mortality rate, INCLUDING a 10 year followup (since Cyclophosphamide increases cancer risk for 9 years). (numbers like 2/1000 have been quoted, but these do NOT include follow up.)
• What does Dr Ruiz think about using proteasome inhibitors, like Bortezomib, in order to kill memory B cells? Would this allow him to reduce or eliminate the need for Cyclophospamide?
• Some people develop a new autoimmune disease after their immune system rebounds from Rituximab (plenty of publications on pubmed). Mayo Clinic neuroimmunology partly attributes this rebound effect to BAFF (B cell activating factor). The killing of regulatory B and T cells (Breg, Treg) may also contribute to this. I know a patient who developed debilitating pancreatitis after HSCT. What are Dr Ruiz's thoughts on these rebound effects?
• Does Dr Ruiz perform HSCT for MS only, or does he also do it for other diseases? (Dr Burt has done it for 3 patients with Autoimmune Autonomic Ganglionopathy, as well as other autoimmune neurological conditions, such as Myasthenia Gravis, etc, with mixed results. For instance, the 1st AAG teenage patient got better, for the 2nd there was no change, and the 3rd actually got worse and turned progressive).
Our founder Alison talks to Shelagh Fogarty about the impact on the autoimmune community of the unlocking after Covid on July 19th and how people in our community are feeling.
The interview with Alison starts at around 10 minutes in on the catch up for Wednesday July 7th. Click here to hear Alison's Interview with Shelagh Fogarty
Just before Covid struck, AIMS was lucky enough to interview 3 of the most respected and experienced HSCT practitioners on the planet - Dr Guillermo J. Ruiz-Arguelles, from Clinica Ruiz, Puebla, Mexico, Dr Denis Fedorenko, from Pirogov Hospital, Moscow, and Dr Majid Kazmi, from King’s College Hospital and London Bridge.
You asked: We listened! We asked the HSCT community what they wish they’d known before embarking on HSCT, and we asked those at the beginning of their HSCT journey what they’d like to know. We narrowed it down to the questions below, and we asked each practitioner the same questions for parity.
We think that this footage will help you to dispel any misinformation that you might be hearing from your neurologists - remind them that these are highly experienced HSCT practitioners at the cutting edge of this treatment. They know what they’re talking about!
These are the questions that we asked the HSCT specialists:
1. How much does it cost, and how long are your waiting lists, and how long will I be away from home?
2. Which type of MS (RRMS, PPMS, SPMS) is HSCT most successful for? What are the success rates? Will my disability improve from treatment?
3. What is the mortality rate at your clinic over the last 5 years?
4. How many patients have you treated over the last 5 years?
5. What protocol do you follow, and what is the process day by day whilst I am at the facility?
6. What complications are possible? Are there specialists available at the clinic to deal with non-HSCT related complications i.e. other illnesses, or injuries? Will this be an additional cost?
7. Am I likely to encounter fertility issues after HSCT? Should I freeze sperm/eggs/embryos prior to HSCT?
8. What is going through the chemotherapy like? Will I require medication after the treatment when I return to the UK? Is there a follow up procedure with your facility after the treatment? What should I do if I become unwell when I return home?
9. Are there problems with a language barrier? Will I be able to understand the staff at the facility? Will I need vaccinations before travelling to the facility?
10. What is the maximum EDSS that you treat? Will you give me a new EDSS when I arrive at the facility to ensure accuracy?
11. What other conditions can you treat at your facility with HSCT?