MSers 50 & 0ver...what do you think?

[shelleyannjohnson]

In the latest edition of Narcoms Now, Dr. Robert Fox, practicing neurologist at the Cleveland Clinic, posted this comment on page 17 of the magazine:  "Another tricky area with DMTs (or DMDs as we call them) is how to know when someone doesn't need them anymore. MS inflammation typically quiets down as patients get older (i.e. over 50 years), and many patients will "graduate" from needing DMTs at some point - but when?"

So by his comment does he mean inflammation dies down, because the disease progression slows down when we are 50 and over? If so, I will stop paying the enormous cost of my DMD. And also, what does that mean for the disability progression?  I sent Narcoms an email questioning the statement, but still have not received a response.

Have any of  you heard this said before? That basically the older you get the more the inflammation slows down. Have your neurologists said anything regarding this possibility? This is news to me and I am knocking on the door of the 50 threshold, so maybe that will be one good thing about turning 50!

What do you think he means by this comment? And what has been your experience?  

[HVAC]

I have heard this statement before. Each case of MS is unique. I have a very slow progressing MS I have had since my first attack in 1965. In my case my MS seems to have leveled off. My MRIs are identical to each other even years apart. I have even had lesions disappear on my MRIs. I am just 50.

I am not on a DMD since I also have Cancer.

Alex

[kwarendorf]

I was diagnosed @51 in conjunction with a major relapse. It was determined at that time that A) I have had MS since I was 31 and B) I now have SPMS. Since my DX I have been receiving Tysabri.

I have not had a relapse since. Who knows whether it's the slowing down of the MS inflammation, the Tysabri or none of the above (it was 18 years between my first 2 major relapses and another 2 years before my third).

At this point I'm not sure I care why my MS seems to be quiet. I have a handful of everyday, permanent symptoms that are fairly well managed with meds. I'm not ready to forsake DMD's at this point to test a hypothesis :-)

Kyle

[supermum_ms]

Good morning,

I believe what he was talking about is the progression from RRMS to SPMS and the "ie over 50 years old", being the oldest MSer age group, which is when that is more likely because of the number of years (decades) that they've had MS for.

With progression into SPMS, the pwMS no longer have the relapses and recovery stages but they continue to decline at a much slower rate and with a less obvious pattern to it. DMD's are targetting the relapse rates a pwMS has, and if they arn't relapsing, then the DMD's are not going to be working for them anymore.

I dont' think he was inferring that 50 is a golden age or anything, transfering from RRMS to SPMS is as individual as the disease but if its going to happen, its more likely (or on average) going to be after your 50. Graduating as he puts it, is not really a good thing if there isn't an alternative medication available.

Cheers.........JJ