Last reply 1 year ago
Trial or not?

Firstly hello everyone.
I was given my active diagnosis of Relapsing MS in December, then there was mention of a trial, today I received an email with the details.
Info of the trial drug is on the https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ocrelizumab

My question to everyone is… Is it worth risking a trial when the alternative drug in the trial is a weak first line compared to the alternative known non trial drug?

My appointment is on Friday so responses would help please.

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Anonymous
1 year ago

Will be on licence sometime this year, so will be available through your neurologist at some point in the future…


stumbler
1 year ago

That’s a tough call, @letha . I actually thought that Ocrelizumab was about to be licensed? It is looking to be the next drug of choice.

So, how do you feel about taking part in a trial? You’ll have the benefit of having your MS closely monitored for the duration of the trial.

It all depends on how active your MS is and whether your Neuro feels that it would be a good move………….


daniel2025
1 year ago

I wouldn’t take any trial drugs to treat my ms. Reason been 1 I could end up with the placebo and 2 if I get the trial drugs I’d be afraid of it not working well for me. But at the end of the day where would we be right now for any form of treatment not just ms treatment if it wasn’t for all the brave people who allow drugs to be trailed on them in medical trails. We would be a lot worse off. You have to make a decision which yoi feel is right for you.

Good luck


letha
1 year ago

@stumbler it’s used in primary progressive already, trial is for relapsing.

I like the benefits but I share @daniel2025 worries too.

I see from the trial paperwork my Neuro is leading the trial (on behalf of the medical company), although I know it shouldn’t, it makes him biased about the trial.
My nurse has just read about it too though and she’s completely turned around on her opinion of the trial. She’s been very negative about me waiting to see since December.


stumbler
1 year ago

@letha, I would hope that it isn’t being used for Primary Progressive. It don’t think it has been granted a licence yet!

There’s already been trials for Relapsing/Remitting, I think.

But, being a trial participant requires a fair amount of time and commitment. So, you have to weigh all these things up.

Good luck with whatever you decide.


letha
1 year ago

Sorry @stumbler I misread the first part, it’s been done for both. And both seem to have had applications for licensing go in already. Answer in Europe due late 2017.

You’ve helped me come up with a good question to ask though.

What is the trial for if an application has already been submitted?

The company associated with this trial isn’t Braun, who put the original application in though. The company states working with the NHS, but Braun can too.

As for time, truth is I work for the trust that I’m a patient of, tests that don’t require me being seen will be done on my site, then I pop to the main hospital when I need to be seen.

Either way, it’s time off sick just for treatment and any reactions thereafter.

What other medication would use consider if you weren’t on the trial? The FDA is supposed to approve it here in the US at the end of the month and there looks to be a lot of people waiting for it. How active does your ms seem? Is cost a factor for you at all? What does your dr think?

Would be great to know some more details because I think it’s a tough call to make.


tracyd
1 year ago

@stumbler

Ocrelizumab is lisenced in the US for use in PPMS and SPMS treatment I believe under special lisence by the FDA pending full approval as a result of the trials.

@letha

Since you’ve said you work for the trust here’s a question ……

Would I be right in thinking participation in the trial would negate the cost of treatment to your local NHS Healthcare Trust and the cost would revert to the trial?
Perhaps this is why you’re being encouraged to Ocrelizumab before it’s fully approved rather than the incredibly effective but also incredibly expensive Lemtrada which is already fully approved?

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