Interested to hear peoples thoughts - I have the option for both treatment types, and have been consulting with many neurologists on this.
I have read all the data I can (published studies, medline and ncbi searches) and come to the conclusion that these are definitely the most successful treatment options for HSCT. My concern is that neither really have much data post 10 years of treatment.
HSCT does have a great success rate, but there are risks, 1-5% mortality, and a tough ride post treatment to recover. However, destroying B & T Cells seems to work. There have recently been publications showing a very high success rate, and I believe this is to become a treatment option in Norway, (and currently trials going ahead in Chicago (USA) Sheffield (England) Australia)
Alemtuzumab as a treatment tries to do the same thing - destroy T & B cells and when they recover it is without the “defect” that causes the body to attack itself, and again there is open label trial data that shows some patients that have gone 10 years without relapses, but published 5 year non relapses data is at about 60/70% (after 2 or 3 yearly infusions) however, ITP 2/3% and thyroid issues 40/40% are not to be overlooked.
I guess what I am wondering is this - I know there are a lot of people who don’t believe in HSCT or strong drug companies pushing their expensive products. But I believe that sitting around doing nothing is not an option. But I want to hear from people who have made a decision on one or the other, and how they are doing.
The Barts MS blog Prof Giovannoni has a number of articles on this, and some interesting incite from Prof G and staff, in unrelated comments and various HSCT/Alemtuzumab posts, have spoken to Dr Nicholas from Imperial as well, but as said interested to hear patients and their experiences/though processes, (sorry for the long post)