When will PPMS patients get treatments?

[JerryD]

I have been searching and re-searching for any crumb of information regarding treatments for PPMS. I was dx'd in 2009 with this form of MS and it was then that I discovered that 'progressive' MS does not have any treatments available, as does Relapsing-Remitting MS. I know that the treatments for RRMS are relatively new to the market. When I read some literature from the AAN convention held this year in Philadelphia, it was made clear that neurologists are well aware that we who have PPMS are frustrated by the lack of treatments. I have felt like the medical community has 'abandoned' me. What is the point of seeing a neurologist, every 6 months or so, just to sit and 'shoot the bull'? I am so sick of being sick. This situation is frustrating and demoralizing.

[Marco]

Jerry - I really hate not having a better answer for you. It grieves me ...

Has your doctor ever discussed methotrexate or pulse steroids with you? Masitinib might be the first drug approved for PPMS, but there are no guarantees. We're still years away from a remyelination therapy, but that would conceivably help us all.

[Dale76]

I have been searching and re-searching for any crumb of information regarding treatments for PPMS. I was dx'd in 2009 with this form of MS and it was then that I discovered that 'progressive' MS does not have any treatments available, as does Relapsing-Remitting MS. I know that the treatments for RRMS are relatively new to the market. When I read some literature from the AAN convention held this year in Philadelphia, it was made clear that neurologists are well aware that we who have PPMS are frustrated by the lack of treatments. I have felt like the medical community has 'abandoned' me. What is the point of seeing a neurologist, every 6 months or so, just to sit and 'shoot the bull'? I am so sick of being sick. This situation is frustrating and demoralizing.

I was reading that they are working on some cannabis based drugs for treating PPMS, of course it is early stages of development so that would be years away.

I have PPMS and use MMJ which works well for me.

[JerryD]

Thanks for responding , Marco. The only drugs that my neuro has discussed with me are Copaxone and Ampyra. I have been following the research on Copaxone and it isn't promising. As far as Ampyra is concerned, I had some bad nausea after taking a few doses. So I gave it up.
I have, recently, applied for inclusion into a clinical trial of Ibudilast. I am encouraged that there is, finally, some serious consideration being given to therapies for PPMS. It's been a long time coming. No one but us (PPMSer's) knows the feeling of being left out in the cold.

[dck696]

A friend of mine, who's husband has PPMS, said he takes Retuximaub infusions, which is a synthetic chemo.

I have PPMS, and took methotrexate. I stopped, in order to be able to participate in the ibudolast clinical trial.

[poppydarling]

All I can say is: YES. I feel exactly the same (and as I said on another thread, really let loose on my MS researcher/doc about this at my last visit. Maybe my rant will help as he goes back to the lab ).

[JerryD]

I just 'googled' MD1003 and found a bunch of stuff that may explain a new treatment option for progressive MS. One can 'hope' ! A 'glimmer'!

[JerryD]

There is some news about an infusion drug for treating PPMS. I just received some info from my psychotherapist about the clinical trials for this drug. I don't know much more. You can believe I will be searching for news!