Dr says older pts don't need treatment?

[NFK]

Hi, all -- Have any of you been told this? I have RRMS and am 62. He says he is taking all his patients older than 55 off DMTs; we don't need it.
He claims Mayo and others are doing this.
Anyone heard of such a thing? I have insurance (not cheap!) but it's not a cost issue for me, particularly.
Thanks so much.
In rainy Portland.
(But at least I know he's not shilling for Big Pharma, right?)

[Sequoia]

No, I have not been told that by my neurologist, nor have I heard of any other doctors who are taking all their patients over 55 off DMDs. I don't think it's standard (or acceptable) medical practice.

As long as a patient is still Relapsing-Remitting, or Secondary Progressive with Relapses, being on a DMD is indicated regardless of age.

Some doctors keep their patients on a DMD even when well into full-blown Secondary Progressive.

I'm not a medical professional myself, but I've learned a great deal about MS over the years as an "interested layperson."

[owlnona]

No, my neuro always asks to make sure I'm still taking my DMD. & I'm 66yrs. old I don't need a relapse at my age.

[Alicious]

Definitely time for a second opinion!

All I'm hearing is "NEW DOCTOR, NEW DOCTOR, NEW DOCTOR!!!!"

[NFK]

Thanks!

Thanks for the feedback. I'm definitely headed to a new neuro.

[techie]

My Neoro sort of fired me

Because after I got the result of the veinous return as positive I think she was all ready to put me on one of the new treatments and was all excited about it. But I spoke up too soon saying I didn't want to go back on any DMDs.
My personal decision. My husband is too close to retirement ( and Medicare if it will still be around) to go on one of these expensive meds.
I don't want to waste the money we've saved for our retirement on medicine.
Back story: I have had only 1 relapse. And with the current McDonald criteria I would have been dx'd Definite instead of Probable in 2000.
techie

[Rachaels Rainbows]

I have Primary Progressive MS and will be 70 this coming April.
I was diagnosed at age 61.
I have a top notch neurologist and he has always told me I could try any DMD I wanted. I have opted not to. None of them are necessarily prescribed for PPMS no matter what the age.

[0485c10]

I read in an article by Dr. Tim Voeller of the rocky Mountain MS center, in the normal life cycle of MS the person has a very inflamatory process at first, then for MOST the inflamation(which DMT treat, inflamation) slows down and stops for most sometime in their late 50's or early 60's.

i'm 48 and after i read that i went directly to my doc and said i don't want to miss that exit, when i pass it. she said she would prefer i go for 5 years without a relapse and then we would investigate this exit....

I think you are SO lucky your doc is doing that without any prompting from you

remember the DMT's first came out in 1993 and most of that time has been proving that people with MS need them, no effort was put into determining when people no longer need them. the answer was you need them always? that the next step to dmt evolution, is to determine IF they are needed always and it sounds like mayo, the Rocky Mountain MS center and people like your doc are taking the lead.

thinking outside the predefined limits of someone elses box!.

[0485c10]

I use Tysabri now-dosage is recommended at every 4 weeks--which i did for 2 years. last year every 6 week, next year i'm thinking about going to 8 weeks then back to a standard crab, gradually step down so i am ready to step off in my mid 50s. That's my plan. i gradually stepped up, now i can start stepping down, thats my goal.

[MSLazarus]

well....

I'm 65 and one doc I went to see said I was too old to try the chemo I wanted to halt my advancing MS. Thank goodness that this doc was just a second opinion and I reported to my neulologist (of 20 years).

Anyway, that led to novantrone and a wonderful 2 years during which I continued farming!

I now do rituxan and ampyra and also am still farming. That consulting neurologist who told me I was too old to keep trying was the head of a neurology department. Imagine the chubby old women he has dismissed with his faulty assessmants.

Linda

[onlyairfare]

I took myself off DMDs a few years ago because I was in my mid-50's and hadn't had a relapse in 5 years, and prior to that my relapses had been very infrequent anyway.

Though my neuro would prefer I take DMD's, he does not disagree with my decision because he too believes that it is possible that I am past that "frequent relapse" period of my life that happened in my 20's and 30's and on into that period where I would be having fewer relapses either on or off DMDs.

I'm taking a chance, but we agree it is not a big risk. Until there is better information, I think this is up to each patient whether they want to continue medication, or risk stopping them. I have had very good experiences with Mayo Clinic in other matters, but I would not care to be ordered off medication if I thought it was helping me.

[chalknpens]

Thank you, OnlyAireFare. I feel better reading this from you.

[onlyairfare]

You're welcome!

I just call them as I see them.

[there]

No, I have not been told that. I took myself off dmds as well 3 years ago, glad I did, I have improved since then probably due to some radical (for me) diet changes. Much less fatigue and less spasms.