New MS Phenotypes

[kjg22170]

How does whether your DMT is working well for you fit into this?

In addition to the concerns other people have already mentioned, I have to wonder how the efficacy of the DMT a patient is on might affect that person's phenotype label. Two years after I was Dx'd, my neuro, the director of a major MS center, told me that, based on both MRIs and clinically observable relapses, I appeared to have a pretty active case of RRMS.

I was unable to take the DMTs available back then. Fast forward several years -- I participated in the Phase II trials for what would become Gilenya and have been on it ever since. I have had only one relapse, and a relatively minor one at that, in the last maybe five years while on Gilenya.

I have severe fatigue but almost no other disability, and while the fatigue is extremely disabling, it is not progressing. Would I be RR non-active, non-progressive because so far Gilenya has worked really well for me? If I had to go off my meds, I have to think that I would have relapses again.

Does this new system just gloss over that point? Given the extent to which MS continues to disrupt my life (certainly less than it disrupts the lives if those with more severe cases of MS but still substantially)? That just feels so dismissive and insulting. Every day is a struggle, even if my meds are doing a good job preventing relapses and keeping my level of disability from progressing.

I certainly do not have "benign" MS, and if people like me are labeled with RRMS, non-active, non-progressing, and if others think we therefore have what was once considered a "benign" course of MS, the system is doing us a major disservice. The way my doc explained the old classifications to me is that they are basic silos that are somewhat helpful, but that MS is an extremely individual disease, and those of us living with it don't actually fit into nice neat silos. We're on more of a continuum. Seems to me that these new classifications are just another attempt to put us into silos when silos fundamentally just won't work.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KSeraSera]

I'm wondering what impact these definitions will have on those seeking SSDI and those of us who have to be reviewed. I would be classified as non-active, non-progressing, now anyway, but MS has already taken it's toll on my body. I couldn't work 8 hours again, even when I did, that was all I could do. I couldn't come home and make myself dinner, or clean house, wash clothes, see family or friends. And that cycle of work then collapse had a huge impact on my psyche. The weekends, well, saved those to recover from the drugs.

So much work has been put into getting Social Security to understand the unpredictable nature of MS and to see that it can be an invisible disability. With this new system, how are they going to react to seeing all this non-whatever in your diagnosis and then understanding how that translates into you can't work if your disease isn't active. Chronicling your symptoms doesn't always get them to a clear point, since they can fluctuate so much.

I also am confused by the statement "has flare-ups but recovers fully". I was told that a relapse (is that the same as a flare-up? and don't get me started as to how benign that makes what we go through sound, like a wart or hangnail) moves your baseline and you never fully go back. You may seem ok, but each one takes a little more of your functioning. Maybe that was just my doctor's interpretation of MS.

I suppose I don't really care for the labels then, and I hope they won't have a huge impact.

[OrangeMetal]

I'm confused. I know we are all somewhat confused here or not sure of the future of these phenotypes. I read the report on the phenotypes fairly closely. So if I understand: right now is what's happening is that these are *recommendations* by a group of neuros, are asking the neuro community to abide by them for diagnosis? Or is it at simply an informative stage right now? Has there been no official "rule" or "guideline" that says we have to be classified this way, and that insurance companies or patient assistant programs will use the rules in a certain way?

Or is it some kind of "general consensus" guideline that this new phenotype classification is going to be followed by neuros everywhere?

Or is it possible it might not spread so much, or do neuros not have a choice now? Is it recommended or an official rule or dictum that these new phenotypes have to be followed?

I'm wondering like many of you - I am taking a drug that I think is probably helping me not have any relapses or progress at all. I was asked on the phone when my patient assist program was renewed what type of MS I had and I said RR.

Now IF AND ONLY IF the big pharma assistance programs and insurance co's decide to (or do they have to?) adopt the new phenotypes - they could EITHER still provide the med even if I said nonrelapsing, nonprogressing BECAUSE THEIR MED IS HELPING ME BE THAT WAY or they could deny it because I am NOT progressing/relapsing? That doesn't seem right and certainly doesn't help what the pharma co is trying to do which is to reduce relapses & progressing.

Is the issue here that insurance could say "well you don't need it because you are not progressing/relapsing"? But doesn't insurance and big pharma patient assist programs realize that the med is HELPING prevent relapses like it is supposed to? So it wouldn't make sense for the insurance or "big pharma patient assist programs" to NOT help or fund the med just b/c you are not progressing or relapsing.

I don't see how they could do such a thing. It's like any other med situation if you take meds for high blood pressure or diabetes, etc. and they help you, why would that not be supported by insurance.

Otherwise I will be compelled to lie (which makes no sense) and say I have active and progressing Relapsing Remitting - unless they would want details and facts from neuro. But my neuro I know would not go for this - and I don't think many neuros would, so I think they - either would take a stance that nonprogressing, nonrelapsing patients should still get medicine or if they have to fill out paper work, somehow insist the patient needs to take it.

Even though I was told I'd have a mild prognosis, the neuro team that helped me through my diagnosis could not stress enough that I needed to be on a med.

I agree with the previous poster who said Montel, et al would be super angry. I don't see how the phenotypes could progress to us being denied meds for not being active or progressing enough when the pharma co's take pride in that they apparently help.

Sorry to be long winded, but this is insane if there is any potential for insurance companies denying drugs if you are not progressed enough, when the drugs help with that.

[OrangeMetal]

PS
I asked my neuro about this and he said "do not worry" and that he agreed with a line in the Healthline article that was just published about the new phenotypes (google it):
“Being moved from one [phenotype] to another is still so subjective, even with these new definitions,” Anne Pappas, who lives with relapsing-remitting MS in Atlanta, GA, told Healthline. “Almost any neurologist, I believe, will continue to maintain a diagnosis level which will allow their patient access to any necessary [DMTs].”