Thanks to all of you who have taken the trouble to get in touch to ask about my health, and if everything is ok generally. Well, the news is that, although there was a small health issue the week before Easter, I am fine. I realise that your concern was triggered by a lack of posts on this site but that was because I have been so busy, and therefore so tired, that something had to give.
Anyway, the good news is that I am as well as multiple sclerosis allows me to be and this site is back in business.
Back in business: My sympathies
Before I go any further, I want to express my sympathies to the family and everyone affected by the death of Kristen Dyson, of Oklahoma, while undergoing HSCT in Moscow.
I am not going to go into detail here; it is enough to say that Kristen developed an extremely rare heart reaction to an element of the treatment. Despite the efforts of intensive care staff, sadly Kristen passed away.
I did talk to Dr Denis Fedorenko, head of transplants for multiple sclerosis patients at the A.A. Maximov centre, after the news broke on Facebook and it was evident that both he and his team had been deeply affected. He took the time to explain to me what had happened but I see no need to cause more upset to anyone by going through it in detail here.
Back in business: Ocrevus not welcomed universally
On the ‘latest development’ front, we have seen the news of the approval of Ocrevus (ocrelizumab), by the USA’s Food and Drug Administration (FDA) for the treatment of both relapsing and primary progressive forms of MS. The subsequent reactions have varied from something approaching ecstasy that at last a drug has been approved to treat primary progressive, through guarded optimism to concerns over safety. Many have also expressed the opinion that Ocrevus is no better than Rituxan (rituxumab), which is at the end of its patent life and which can only be used for MS as an off-label medication. Manufacturer Genentech has attracted criticism, whether justified or not, that the two drugs are the same.
Now, although the two drugs are very similar and both work in the same way, there is a difference. Rituxumab is a chimeric antibody, meaning that it was produced from the cells of a non-human organism, actually a mouse, while ocrelizumab is a humanised antibody. Humanised antibodies also come from a non-human species, but whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans.1
I am not going to join in the Ocrevus argument one way or the other; I’ll leave you to make up your own minds.
Of course the FDA decision only affects the USA and the rest of the world continues to wait. In Europe, the European Medicines Agency (EMA) says the approval ‘clock’ has been stopped as it is still awaiting answers to questions it asked last September. The agency says it is waiting for the company to supply the answers. Once it gets them, the EMA’s approval process will be back in business too.
1 Riechmann L, Clark M, Waldmann H, Winter G (1988). “Reshaping human antibodies for therapy”. Nature. 332 (6162): 332–323. doi:10.1038/332323a0. PMID 3127726. Queen C, Schneider WP, Selick HE, Payne PW, Landolfi NF, Duncan JF, Avdalovic NM, Levitt M, Junghans RP, Waldmann TA (Dec 1989). “A humanized antibody that binds to the interleukin 2 receptor.”. Proc Natl Acad Sci U S A. 86 (24): 10029–33. doi:10.1073/pnas.86.24.10029. PMC . PMID 2513570. (This is an early example of the use of the term “humanized antibody”.
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50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.