SHARING THE EXPERIENCE

WEBINAR

HSCT TREATMENT FOR AUTOIMMUNE DISEASES
15.12.2018 Moscow, Russia
WEBINAR
High Dose Immunosuppressive Therapy
with Autologous Hematopoietic Stem Cell Transplantation
for Multiple Sclerosis and other Autoimmune Diseases
Presenter: MD, PhD, Professor, Dr. Denis Fedorenko
The Leading Hematologist of Russia, Doctor of Medical Sciences, Professor of the Department of Hematology and Cellular Therapy

Assistant: Anastasia Panchenko
The administrator of the Department of Hematology and Cellular Therapy in Medical Surgical Center

Interviewer: Gwen Higgs

Interviewer: Janet Voyce

Interviewer: Ann Wilson
Special thanks for the support to the Facebook society: "Russia HSCT for MS & Autoimmune Diseases"
25.06.2018 Moscow, Russia
WEBINAR
High Dose Immunosuppressive Therapy
with Autologous Hematopoietic Stem Cell Transplantation
for Multiple Sclerosis and other Autoimmune Diseases

QUESTIONS

Here you can find the answers to questions
that were posted during the event
Participant:
Hello Dr. F. Im 24 years old and had a great relapse in august last year. Since then i suffer from shaking hands. Also my whole body is shaking. So here is my question:
How high is the chance of remission after one year post diagnosis?
Dr. Denis Fedorenko:
It's about 80-90%
Participant:
I had never had steroids or osteoporosis before HSCT - yet now I have extensive multifocal AVN.
How can that risk not have been increased by HST?
Dr. Denis Fedorenko:
In this situation we can decrease steroid dose to minimal, no additional risk.
Participant:
Why do you accept people with PPMS without active lesions when other centers say they can't help them?
Dr. Denis Fedorenko:
Our effectiveness rate for PPMS is about 60-70%

Participant:
So, after two years post HSCT, one shouldn't expect much benefits, disability reversal?
Dr. Denis Fedorenko:
MS stabilization (when we have stopped it) is also good. Sorry. Sometimes, transplantation is provided late
Participant:
Can I ask a question - If I had a prior lyme disease infection and now I am testing negative for it. Is it best to rid yourself of lyme first then have HSCT?
Dr. Denis Fedorenko:
If you are negative now, you can have transplantation.
Participant:
I want to ask a question. I m one year after the HSCT. I experienced ataxia before the transplant...but now the ataxia in on and off....do you think it is something I have to worry about.
Dr. Denis Fedorenko:
I don't think you need to worry about. I recommend using right rehabilitation
Participant:
Someone asked if breast milk can be helpful in the healing process...since it helpa to develop theimmune system in babies...
Dr. Denis Fedorenko:
We don't have this experience. I can't understand the mechanism, it isn't databased approach.
Participant:
How can you tell if it's progression post HSCT or just the rollercoaster? And how long does it typically last?
Dr. Denis Fedorenko:
We need to assess every case of worsening individually. It's important to provide examination, neurological assessment, MRI. Rollercoaster is about 3 months.
Participant:
If the treatment doesn't work can you still go back on ms drugs like tysabri as my neurologists said it would change the way my body reacts to drugs so tysabri might not work for me anymoew
Dr. Denis Fedorenko:
Yes we can use DMD (Tysabri etc.). AHSCT doesn't change body reaction to it. But, we are developing new approaches for relapse/progression after AHSCT.
Participant:
What feedback does Dr Fedorenko have about the link of AVN's to the large dose of steroids given during HSCT? Does having the large doses of steroids pre HSCT (to calm inflammation relapse) contribute also to the patient AVN's?
Dr. Denis Fedorenko:
We use mild to moderate dose of steroids. If patient didn't have huge dose of steroids and/or osteoporosis before, the risk is very low.
Participant:
What are the risks of having viruses (Epstein Barr, JC virus) and bacteria like borrelia (not proven in Holland by ELISA and Western Blott, but in Germany based on DNA positive) during the chemo or after the chemo? Is this treated beforehand?
Dr. Denis Fedorenko:
We provide tests for infections (viruses, bacteria) before transplantation. If patient has infection, we treat it.
Participant:
Are there any other conditions (not MS related) that could exclude a patient from this treatment such as Heart bypass surgery, COPD, diabetes etc?
Dr. Denis Fedorenko:
Exclusion Criteria
· Any condition that affects normal functions of organs such as heart, kidneys, lung, liver etc. as this would limit your ability to receive high-dose chemotherapy immunosuppressive therapy with AHSCT
· Any active or long term infection caused by viruses, fungi or bacteria
· Uncontrolled diabetes
· A positive test for HIV, Hepatitis B and Hepatitis C
· Life expectancy is severely limited by another illness
· Evidence myelodysplasia or other non-autoimmune cytopenia
· Having received a cytotoxic agent within one month prior to AHSCT
· Pregnancy or at risk of pregnancy, including those unwilling to practice active contraception during the time of therapy
· Psychiatric illness, mental deficiency, or gross cognitive dysfunction
· Unability to give written informed consent in accordance with research ethics board guidelines
· High disability level in MS patients (EDSS>6.5) and/or stable non-active disease during the last 2 years.

Participant:
Dr Federenko will you be doing any investment in the study of remyelination therapy
Dr. Denis Fedorenko:
We are going to take part in research of remyelinating therapy. Maybe, in nearest future.
Participant:
Hello. I wonder if there are long waiting lists for the hsct treatment now? - Camilla

Dr. Denis Fedorenko:
Waiting list is about 6 months, but you should take into account the factor that patient should stop taking immunomodulating drugs in 3-6 months before admission. You can learn more about it in our book.
Participant:
Hello, I was given a working diagnosis of PPMS in August 2016. I have been trying to get HSCT in the UK. I think to get rid of me the review board have suggested I could have Neurosarcoidosis, despite 2 Neurologists still saying MS. What scans/test results will you require in order to consider me for treatment? There might be a plan to give me Rituximab or Cyclophosphamide. If I was approved for AHSCT by you would I need a period of wash out before starting? If so I would refuse these treatments Regards Shaun
Dr. Denis Fedorenko:
It's difficult to make decision about treatment plan distantly.
First of all you need to take a look at HSCT book, and complete our medical questionnaire.
Special thanks for the support to all members of the Facebook community:
"Russia HSCT for MS & Autoimmune Diseases"
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