Treatment with RRMS DMT when you are not RRMS

[Tawanda]

I don't know exactly how to word this, so bare with me.

I have never had an obvious "relapse/remission" since diagnosis, but was on a DMT for years. Was this a stupid waste of money on my part, or are there important unspoken "unknowns" indicating I should still be on one, no matter what "style" of MS the textbooks indicate? The mechanisms built into these DMTs are for the purpose of slowing down MS progression. Doesn't it seem logical that no what "kind" of MS you have, you would want to slow it down, whether or not you can track relapses and remissions or not? The one truism that reaches all across the MS board is that unless you are dead, it could always be worse!

"Categories" of MS vs DMTs has always confused me. I almost felt like being on a DMT was like I was "cheating" or something. On the other hand, after being off my meds for a year or so, I had a blowout in my left ear and lost significant hearing along with a fluttering eyelid on the same side.

When I asked my neuro. if he thought this was a result of my DMT vacation he just shrugged and asked if I wanted to go back on a DMT. I don't know! I knew from day one I was my own healthcare advocate, but sometimes I need some help here! As far as the meds for official treatment for "other" types of MS besides RRMS, no thanks, as I am really not impressed with them at this point.

[Jules A]

This probably won't help but based on the way I understand it I wouldn't necessarily say you don't have RRMS simply because you haven't had what would normally be thought of as flares and remissions.

I had two obvious flares with loss of vision in the first six months but none in the 10 years since. The way my neuro explained it to me is that I am still considered RRMS since my overall condition, my EDSS, has not declined despite annoying neuro symptoms such as bladder frequency, fatigue and paresthesia.

[andi b]

same here, no relapses in 5 years

I was diagnosed in Oct of 2010 with optic neuritis and an MRI with lots of lesions. Not much else, except tinnitus, some tremors and some forgetfulness (which could be other than MS).

I was started on Avonex in November 2010 and have faithfully done it for the whole 5 years. So I understand what you say about feeling like you are cheating being on this heavy duty drug. I even asked my (new) neuro about the possibility of going off of it since I'm 65 and have had no issues -- and he said "NO".

But once I stop working and have to pay for the Avonex on my own under Medicare part D (I currently am on a 0 copay program thru Biogen) I might not be able to afford it. So that is my dilemma. I do understand why a person might not want to stay on a medication that may or may not be helping (and who's to know if it is or isn't?).

[Jules A]

I was diagnosed in Oct of 2010 with optic neuritis and an MRI with lots of lesions. Not much else, except tinnitus, some tremors and some forgetfulness (which could be other than MS).

I was started on Avonex in November 2010 and have faithfully done it for the whole 5 years. So I understand what you say about feeling like you are cheating being on this heavy duty drug. I even asked my (new) neuro about the possibility of going off of it since I'm 65 and have had no issues -- and he said "NO".

But once I stop working and have to pay for the Avonex on my own under Medicare part D (I currently am on a 0 copay program thru Biogen) I might not be able to afford it. So that is my dilemma. I do understand why a person might not want to stay on a medication that may or may not be helping (and who's to know if it is or isn't?).

You are an inspiration if you are 65 and have had no issues! Personally I would say keep on doing whatever it is you are doing because it sure seems to be working. Even though I know we will never know for sure if it was the medication or not there is no way I'd take that chance with our wonderful track record.

[KoKo]

Tawanda

I think that the mechanisms built into these DMT's for RRMS are for reducing inflammation, aren't they (and thereby slowing progression)?

Several DMT's have been studied in PPMS without a positive effect on progression.

The DMT's work for RRMS by reducing inflammation in the central nervous system.

PPMS has a disease course that is characterized by nerve degeneration, rather than inflammation.

That's basically what all the various literature says regarding the difference.

The researchers are still researching all of this, though.

Take Care

[Tawanda]

I was diagnosed in Oct of 2010 with optic neuritis and an MRI with lots of lesions. Not much else, except tinnitus, some tremors and some forgetfulness (which could be other than MS).

I was started on Avonex in November 2010 and have faithfully done it for the whole 5 years. So I understand what you say about feeling like you are cheating being on this heavy duty drug. I even asked my (new) neuro about the possibility of going off of it since I'm 65 and have had no issues -- and he said "NO".

But once I stop working and have to pay for the Avonex on my own under Medicare part D (I currently am on a 0 copay program thru Biogen) I might not be able to afford it. So that is my dilemma. I do understand why a person might not want to stay on a medication that may or may not be helping (and who's to know if it is or isn't?).

Money is definitely a factor for me. Copays are nothing compared to "retail", but being on a fixed income, I need a really big bang for my "drug" buck! I have gotten rid of all drugs that don't knock it out of the park, and for me, that was about every one of them! The DMT was the last to go. I have an extremely intellegent daughter who will be college-aged in less than four years and clueless as to how we're going to finance that (pan handling?)! It would be a lot easier to rationalize paying for a DMT if it was so good I could actually go back to work and generate a paycheck! All I've managed to generate all these years are expenses!

[Tawanda]

Tawanda

I think that the mechanisms built into these DMT's for RRMS are for reducing inflammation, aren't they (and thereby slowing progression)?

Several DMT's have been studied in PPMS without a positive effect on progression.

The DMT's work for RRMS by reducing inflammation in the central nervous system.

PPMS has a disease course that is characterized by nerve degeneration, rather than inflammation.

That's basically what all the various literature says regarding the difference.

The researchers are still researching all of this, though.

Take Care

Thanks for the explanation. The only thing I have ever understood about MS is that my immune system has mistaken my nerve coatings for food! I have never understood just what exactly it is in my body that is "inflaming". I do know that steroids never helped me any though...