Last reply 4 days ago
Being told what DMT, not a choice

I always thought the DMTs would be suggested to you and then you’d have a discussion and it would be your choice. Not in the experience I’ve had.

I was told I was going on Tysabri, after a faff, turns out I’m JC positive, so it’s too risky. At the internal hospital meeting they re-tabled my case and put forward Mavenclad and Ocrevus. Got a call today, saying that they want to put me on Mavenclad because I want kids in the future. Personally I think I’d rather be on Ocrevus due to its highly effective nature.

Anyone else had a similar experience?? I just don’t feel like anyone cares about what I want, not enough to talk me through it any way.

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rel12
5 days ago

Hi @erika_galli !

Ugh that’s terrible and I would feel the very same, that no one cared what I wanted to do or take. I felt that at times around old doctors that I would deal with. I made the decision to look for a new neurologist because it is important that you feel comfortable with him/her. Do you have a neurologist? Has the hospital explained to you why they have recommended those DMT’s?


dominics
5 days ago

@erika_galli It is a well-studied area that MS patients tend to be willing to accept far higher levels of risk (far higher is usually not hat much more, it just depends how it is framed) than the clinicians give them credit for.

Back in the day the injectables were treated with kid gloves, oohed and aaahed over and not easily obtainable. Short memories as they are seen by many as sub-optimal and others as ‘very safe’.

Choosing an MS drug ought to be a guided journey. Your opinion and feelings are valid. Your knowledge is likely to be less than that of the Neurologist. Many of the docs struggle to hit the balance of guidance, advice and hands-off.

This is further complicated by the fact that a decision is being made now regarding treating future events.

Personally, I’d get politely and smilingly stroppy and insist that what you choose is what you choose and you are fully appraised of the potential risks and benefits. After all, it is your choice to put your health now and in the future over a theoretical possibility of conceiving in the future. Ocrelizumab is not proven to harm things, providing the wash-out period is sufficient (caveat – it is what I can read from the data, not an absolute medical opinion for I am not a doc).

Cladribine and Ocrelizumab – in some ways, better choices to have to make than many people who are punted off at the point of drug choice to be told they must make up their own mind.

The conversation ought to be around preventing or delaying the onset of fu8ture disability and/or mitigating the effects of things that do (inevitably) happen.

Best of luck.

Dominic


dominics
5 days ago

Have a read of this recent paper – it isn’t rammed with medical gobbledygook!

https://www.frontiersin.org/articles/10.3389/fneur.2018.00174/full

Free to download PDF which is my suggestion as you can print it and manipulate it more easily.


laurab90
5 days ago

I had a similar experience
I was diagnosed, then given the one option of Lemtrada (which I had)
Was confused as to why I only had one option 😬 especially with all the risks 😬


dominics
5 days ago

@laurab90

If it is any reassurance, if the drug is Lemtrada then they are likely to have felt that your MS was/is sufficiently aggressive that they need d to hit it as hard as they could as soon as they could.

Assuming it was in the last 11 months, when Ocrelizumab became available, there would have been little option unless you were on a trial.

Next step up is HSCT.

Best

Dom


laurab90
5 days ago

@dominics

I had my first infusion 2018
So by what you’ve said that was the only option for me then 😬😬


dominics
5 days ago

Ahh, I think you were v lucky then 😉

Go read the Bart’s blog to see just how poorly the European regulators have misinterpreted the data. As ever, the reaction demonstrates the lack of context.

Prof Giovannnoni has written at length about it.


laurab90
4 days ago

@dominics
Just finished reading the open letter in the Bart’s blog
I now realise I was lucky to receive that first and not fails others before trying🙈😂

Thankyou 😊


dominics
4 days ago

Pleasure

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