ClinicSpeak: what about me I have PPMS?

Do we need separate quality standards for PPMS? #ClinicSpeak #MSBlog #MSResearch

In response to the following comment on today’s quality standard post:

‘I have PPMS. I read posts like this, most MS posts in fact, and feel this stuff has nothing to do with me. Are there other PPMSers that feel marginalised just by virtue of their disease pathology? It’s kind of like how working class black people of America must feel in the current climate.’

10 thoughts on “ClinicSpeak: what about me I have PPMS?”

  1. Separating PPMS from relapse-onset MS simply brings up the old debate on whether these are separate diseases. I thought we had settled this argument years ago. Do we want to go this route?

    1. No, I think we need to treat PPMS and relapse-onset MS as one disease and treat them under the same service. No need to divide them into two groups.

    2. What did Novartis say about PPMS when its trial failed? Did they say PPMS was the same as RRMS?

    3. But Prof G, the targets to treat RRMS are not viable for PPMS. To treat them under the same services seems wrong as the latter is untreatable other than a few rotten symptomatic drugs.I think that PPMS needs to break away from RRMS to garner stronger advocacy and agency.

  2. Is it not true that early PPMS could be treated using the treatments used for RRMS?I suppose add this to a neuroprotecive and your halfway there?

  3. Neuroprotectives. We need neuroprotectives. There is no conversation about PPMS until we have proven neuroprotectives. And most people with RRMS also develop SPMS at some point. So they will need neuroprotectives too.

  4. Hey it's ok don't worry if you have spms you have the MS smart trial, if you have ppms though you may be screwed, as PPMS is excluded when it would be just as easy to include and use the drug to treat this type too

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