zondie 16/03/17
Last reply 1 year ago
Hcst and Ocrelizumab

HCST and Ocrelizumab.

Just had abouther attack taking all 4 limbs and my voice. Needless to say I’m very scared and these are the two my family and my new neurologist have been going through. I’m conflicted because I still believe Ms can have a route cause and be fixed but it’s a rough decline until you do figure it out lol

So has anyone had personal experience with either of these or know someone who has? Heard of hcst three years ago at DX but there wasn’t as many people doing it back then, how successful is it? Still a hard one to get full info on. And ocrelizumab is a knew Rituxan and it’s just being released so once again unless you were working with a doctor involved in the trial as I am now, I wonder if he leans towards it because it’s great or because he was involved with the trial, any and all experiences and info much appreciated!

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stumbler
1 year ago

@zondie , HSTC is pushing boundaries and may be the ultimate MS treatment. But, it is still in its infancy and requires a very aggressive chemotherapy pre-requisite. This is not without risk!

Ocrelizumab is being rushed through the licensing process and is the next great hope. It may already be available in the US, although I’m not sure.

Have you or your Neuro considered Lemtrada? It’s a mature treatment and is the present treatment of choice to aggressively treat MS. Use of Lemtrada would not preclude you from using Ocrelizumab or HSCT, if it was not successful.

Just some thoughts for you.


mmhhpp
1 year ago

But ocrelizumab is for PPMS.


californiadreamin
1 year ago

Ocrelizumab is actually highly effective for rrms. It’s just the first drug shown to have a measurable improvement in ppms.


zondie
1 year ago

Lemtrada scares me because of 1/3 patients getting there thyroid messed up. I’ve read that retuxun(can’t spell) may actually have all he benefits with less of the risk of Ocrelizumab even though Ocrelizumab is more human that retuxan(can’t spell). Anyone have info on that?

I had no new lesions when on Tysabri but developed many Cushing she like symptoms and came off tysabri to see if it caused it, i was still bed ridden with fatigue and when stopping so I’ll never know if it’s what through off my hormones or not and since I don’t know I think it best to go to abouther.

Hcst is SO tempting because “end to disease and treatment of old lesions” is tempting and I know someone who had luck with it. But I know it’s not a cure for everyone and risks come with it. I will say this, it seems it’s not done the same everywhere and more luck comes from those done abroad, they use a stronger chemo to wipe out the immune system. I wonder if I can go on a dmt but still go get stem cells put in to heal lesions abroad somewhere. Pretty devistated with this last attack as I fell it affected my cognition. Just looking for hope I guess


stumbler
1 year ago

@zondie , here are some details about Rituximab, https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/rituximab . It’s from the UK’s MS Society website.

As for Lemtrada, yes, there is the potential to be left with Thyroid issues. However, this is easily managed with medication and is considered a lot less disabling than what MS can potentially do.

There would seem to be little point in adopting a DMT, then introducing Stem Cells. The DMT will only reduce the frequency and severity of relapses, which would continue to accumulate damage. The introduction of stem cells would seem to be like trying to use a bucket with holes in it. The more water that is added, then more is lost………….

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