Is there age discrimination in treatment of MS once you are over 65? Why do doctors want to stop DMTs @ 65-68? Is Medicare causing it?

[Sabs2]

Does anyone out there have an experience or know of a valid reason why doctors seem to want to stop DMTs for MS once you reach your mid-60s? It's happening to several of my friends and I at the same time (different Drs). Dr. Boster on YouTube says it's bologna. My fear is that I'm having no new lesions etc because my DMT is working. I have one friend who is having disease progression after being off DMT for nine months, and can't find a doctor to prescribe a DMT. We feel like because we reach 65 we are no longer considered of value. Does anyone out there have any experience or knowledge of this trend/practise/method of treatment (or lack of ) ? Thank you in advance.

[LJMC]

My M.S. doctors didn't even start me on a DMT until 2003, when I was over 60. I'm near 78 years old now and still on that same DMT. My M.S. doctor says that as long as it keeps working for me that I should keep on the DMT.

[goatgal]

I was diagnosed at 70, ten years ago. Since that time I have seen 7 neurologists, none of whom would prescribe a DMT. All have said the decision is because DMTs were not trialed on elders, so their efficacy is unknown. All further explained that elders react differently to medications than younger folks. In my own case this is probably true as I have had adverse reactions to Ampyra as well as the senior formulation of the flu vaccine. But if my MS could be stabilized or improved, I would gladly try a DMT.

I do not know about Medicare's drug payment policy because a very good supplemental policy covers my prescriptions, as well as everything else Medicare doesn't cover. I do know that Medicare has many limitations on what bean counters consider "unnecessary" treatments and share your feeling of being written off as without much value.

[Hidden in reply to goatgal]

May I ask what company your supplement is with? I couldn't find one that covered meds. Thank you.

[goatgal in reply to Hidden]

Ach, it's a long story, but here goes. Long ago, my employer and the union I belonged to negotiated a contract: they would not give us a badly needed raise, but we would have lifetime health benefits. Within several years, my employer realized what a disastrous error that was. The next contract did not provide lifetime health benefits for new hires, but my employer honored the old terms for those who had been employed/hired while it was in effect. When I retired 15 years ago, Medicare became my primary BUT I am fully insured as well under California Blue Shield because I am one of those covered under the old contract. And it's a very generous policy for those of us still alive and covered by it no matter where we live. My copays are $100 a year. I am grateful every day.

[Hidden in reply to goatgal]

Thanks for the explanation! Glad you have this coverage!

[goatgal in reply to Hidden]

As I said, I am grateful. It picks up when/where Medicare leaves off. It doesn't cover vision or dental but does cover skilled nursing, PT, acupuncture, and chiropractic. Since my pension is only half of what I earned at retirement, my insurance policy is a blessing.

[pamgarner in reply to goatgal]

Lucky Lucky Girl!

[Brindisi1]

I was on dmt until age 70

I wanted off. Because. Progression & no lesions" when MRI done and upset meds went from $4000 a yr when I first started in 2000 to over $70,000 a yr 20 yrs later. Even Generic over priced

Feel about same. Fatigue wise & other issues. But am still walking

One dr wanted me on Tysarbai. But was advised by another made more suspectible to certain cancers.

For me worked out. Medicare paid for meds til I opted out. Visit next month, new doc let's see.

[themswire]

I'm 71 years old and have been on a DMT, steadily, since they first became available around 1996. My most recent treatment was with Lemtrada, which I began at 69. But you've raised what, for others, is a real problem. I wrote about this in my blog a few months ago: themswire.com/how-old-is-to...

[DM0329]

My neuro talked about stopping tx at age 65, too. Also, Dr. Aaron Boster (prominent MS Specialist on YouTube speaks of NOT stopping tx at 65 but about possibly switching tx).

Because your immune system naturally "weakens" as you age and because a DMT suppresses your immune system and because tx's haven't been studied on populations over age 65, many older (trained) neuros have this mentality.

FWIW, I plan on sticking with my Avonex to at least age 70 (if I'm lucky enough to continue NEDA stability and life, of course, LOL). It's my guess, that no one really knows, but I suspect that Dr. Boster is knowledgeable about switching a higher suppressing drug to a lower one (after age 75 or so?).

Riddle me this. . .ha ha ha!

[Texandyroe]

No, I’m 67 and my neurologist (an MS specialist) says she’ll keep me on my DMT (Tysabri) forever, unless I develop JCV.

[Ruadh]

My ophtho consultant was discussing this very point with me just two weeks ago. He advised me that due to my 'older age' (82 yrs) it would be unlikely that I would be prescribed 'offered' the MS meds. Which was a relief, as I have take alternative protocols : no possibility of argument. Smile.

[mrsmike9]

Glad to read about this. I am 61 in May so it's good to know if I may need to fight for my meds in a few years. I am on Aubagio and it has kept me level. I DO NOT want to stop!

[stepsforNeeC]

Wow, eyeopening! I'm in my early sixties; and would concurr that denying DMT's because of age is grounds for age discrimination. Now from my experience, Medicare and Insurance Companies hate the fact that at times our doctors will prescribe the most expensive DMT and exclusively deem a patient "Brand Only." I'm on Copaxone and currently stable, but Copaxone is costly. So what do we do if this pattern behavior continues? It can not happen, if a patient needed Proton Therapy for Cancer and was 60 + would we be having the same conversations, and not to minimize any illness. We who struggle daily with MS often have to speak louder, fight harder to make doctors, clinicians and sometimes family hear us clearly. Thank you for sharing this.

Blessings-

NeeC

[pamgarner in reply to stepsforNeeC]

just as I suspected,insurance companies want us to quietly disappear over 65,I guess the decision has been made for us.We shouldn't have to fight for treatment! ah me

[Sabs2 in reply to stepsforNeeC]

I was on Copaxone as well. What started this is that my ins. co. no longer covered it at all. I had to go generic, and had horrible reactions. She (MS specialist Dr) said it was unnecessary to go through this since I should just quit DMT and pushed for that. I am pushing to switch. Everything is on hold during Covid

[Hidden]

My neurologist said that usually MS stabilizes once you reach your 60's. But that may have just been in people like me who were diagnosed in their 20's and have a relatively slow progression.

Because of the cost of Copaxone, he said he would not be adverse to me switching to the generic but I could always go back. My last 2 MRI's have been stable.

I have ranted before about the cost of drugs under Medicare. And I have written my senators and congressman.

[4fishylady]

Well, I was diagnosed at age 71, now 76 and am thankful that My Neuro put me on Tecfidera! In the last 12 months I have only had one relapse that caused me to have to call and get prednisone. The prior year I had it 3 times. I find that the more I exercise, the better I can keep on going and doing pretty much what I want to do.

[cookie12669]

I do not know if there is an age discrimination regarding MS. I have had symptoms since I was 23 and now I am 73. Officially diagnosed at age 70. The small town I lived in Springfield Illinois docs kept saying I was just getting older. Not age discrimination just stupidity. I took the MRIs I had had to Mayo Clinic Jacksonville FL and we all saw the MS lesions. Since being diagnosed I have not had any problems with discrimination. Wish I could be more help. Good Luck!

[kdali]

Changes in immune function, such as reduced inflammatory response, in older bodies mean the drugs may not work as well or at all. Newer cell targeted therapy may be the gray area for some practitioners. I don’t know about Medicare. I would seek a second opinion.

[green244]

My husband is 68 and on Ocrevus. No indication from the doctor that he will be pulled off.

[MsMoose77]

A doctor here (totally useless) said that to me months ago, but I had no idea I'd be facing Medicare refusing to treat the disease that's severely disabled me. I'm 70, was diagnosed very late, was on Copaxone since 2010, can't take it now as my body now reacts badly to it.

[RZ1984]

Here’s a great article about this topic.

healthunlocked.com/redirect...