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@Erika_Galli 

Last reply

Erika_Galli

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
@Rel12
 

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
@DominicS
 

@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