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.
Announcement
Collapse
No announcement yet.
When will PPMS patients get treatments?
Collapse
X
-
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.
-
Originally posted by JerryD View PostI 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 have PPMS and use MMJ which works well for me.
Comment
-
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.
Comment
-
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.Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
Filed for SSDI 8/12. Approved 11/12
dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS
Comment
Comment