Due at the relapse clinic today after suspected relapse last week. Diagnosed with RRMS at end of 2017 in late 30’s, intermittent symptoms for 10 years prior to that, but during 2016/2017 things escalated with maybe 4/5 relapses.
Relapsed in Jan 2018 the week before starting Tecfidera, but went ahead and made good recovery. Relapsed again in July 2018, so escalated treatment to Tysabri.
Next week will be my fourth infusion of Tysabri, but very frustrated to have relapsed already, although it’s not as bad as previous relapses
Wondering whether HSCT will be on table given I’ve relapsed on two DMD’s, with one in the highly effective category.
Gone from keen footballer and distance runner to slow walker in a two year period, with various on going symptoms, but have had a degree of recovery after each relapse.
Any thoughts on similar experiences and whether HSCT likely to be an option would be welcome.
I think that is a question best asked of your neurologist. There are a few places in the U.K. where they do HSCT treatment, but it will depend on where you are based, what links your neuro has with anywhere that does it and their own personal view on it.
But I do suspect that your neurologist would suggest you give Tysabri a bit longer than 4 months to really see if it’s going to work for you. Some drugs do take several months to actually start delivering on their promises. So when you next see your neurologist, or if you give it another couple of months and meanwhile have another relapse (in which case get in touch with him/her) and ask their advice.
Hi, I just got out of the clinic and was offered autologous hematopoietic stem cell transplant (AHSCT) if my latest MRI is showing active (grown or new) lesions… they are currently analysing it. I have had Lemtrada and I have had two relapses since May. As I can tell, you would fall within the categories and one criterium you need to tick (for the NHS) is that you should show new lesions since you started tysabri and have 2 or more relapses in a year despite being on Tysabri. I would echo the others and talk to your neurologist and see if you can have a scan now and maybe a year later. I also would give tysabri a bit more time and meanwhile make sure you are regularly/yearly scanned (some neurologists are not as pro-active). But I hope tysabri works for you as AHSCT is an investment and carries considerable risks.