Hello everyone just needing some advice. I was diagnosed at 27 in 2020 and have been on Tysabri and since then no relapse and no new disease activity. I have always been on extended dosing as my JCV titre is 2.81 so very high. My neuro has said that past June 2023 she is no longer willing to take the risk and has to take me off. She said because I’m still young and a young mother she will put me forward for stem cell therapy as she feels this is the best option to keep me stable. What do you guys think? I really want to but I’m so so scared. She feels tjay I will relapse badly after tysabri as there are no better DMT’s available. Just looking for some input and guidance. I’m also in my career nearing a headship (headteacher position) and I really really don’t want my MS to stop me getting this thank you
You’re at the vanguard of HSCT as a treatment as so few have had it in the UK. This group would be very interested in your feedback if you do get onto an HSCT programme but right now, there may be few if any on this forum who have gone through with it. Much more discussion on US forums.
I am sorry that you’re in this fix. Quite honestly, I think that keeping your MS under control is absolutely central to letting your live your best life. It is a great pity that you have to come off Tysabri. I’ve been on it 10+ years myself and I know what a life-changer it is for those of us with very active RRMS. But your neurologist is clearly switched-on and very keen to make things OK for you, which is great, and HSCT is surely the way forward for young people like you, and wish you every success with it. I have a happy notion that, in ten years’ time, you might take a 5 minute break from your full and busy work and family life and come on here to say what a marvellous game-changer HSCT has been for you and your family. Fingers crossed for you.
It might be useful to talk to MSers that have direct experience of HSCT, in the UK. Hopefully, it will help to put your mind at rest.
I’m in a similar position. Did Ty in 2015 and my JCV raised from 3.36 at the start to 4.58 by dose 8. That was before the extended dose existed. Went on to Lemtrada which worked well, until it didn’t, for me. JCV at 3.2…ish, so with all the treatments I’ve had, plus radioactive Iodine for thyroid cancer earlier in the year my Neuro doesn’t like the idea of me going back on Ty. Have had my letter confirming I’ve been accepted for HSCT, Stems, but I have no idea how long it will be before I actually get the treatment.
Link below is a Vlog a HSCT patient made documenting their experience throughout the treatment and uploaded to Youtube that will give you an idea of what to expect should choose it as an option.
If you really don’t like the idea of HSCT maybe discuss Lemtrada. 5 day infusions 1st year followed with 3 day infusions the 2nd year. That should be it. I’m awkward and the 2nd course lasted 2 years and I got a 3rd course thsat lasted 18months.
Thank you for this really helpful
How are you symptoms how after being in the other drug treatments? Should I potentially have a go at the first?
It’s an option to consider. Problem with MS is it can be both similar but completely different per person.
When treatment works it’s great but there is no way to draw any comparisons of symptoms regarding them. Thus what my symptoms have been and any ongoing symptoms won’t help in anyway. When a treatment isn’t working the symptoms of a relapse, for each of us, is random. They may be similar but could be completely different at the same time. I may have got double vision in the first relapse after DMT1 stopped working but someone else could end up with their hands clawing or something.
I’ve had no official data on HSCT and my Neuro mentioned it back in Feb and then I had to get yet another Mri and data sent to another hospital requesting HSCT. All I’ve had about HSCT was a copy of the letter from a Neuro at the London Hospital to it’s department that does the treatment accepting my referal. So I’ve been accepted and nothing else. My neuro said it could take up to a year and I have no idea if that only starts after I was accepted. My research on HSCT lead me to the Youtube vlog I linked.
I mentioned the Lemtrada as it’s the same tier of DMTs as Tysabri. It’s sidestepping to something of equal effectiveness, assuming it works for the patient. From my undertanding most patient on Lemtrada are fine, have the original 2 courses 1 year apart. Some, like me, may need a 3rd and even 4th course.
Lemtrada is not drastic like the HSCT. That’s why I linked that guys Vlog on Youtube about HSCT so you can see what’s involved. If you decide against HSCT Lemtrada be a viable option. I’m rather surpurised it wasn’t even suggested. Though it’s been 5+ years since I was take of Ty so maybe things have changed.
Forgot to link the mstrust data on HSCT earlier with the Vlog so linking that below