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Old 04-02-2019, 02:04 PM
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Default Discontinuation of disease-modifying therapy in patients with MS over age 60

Discontinuation of disease-modifying therapy in patients with multiple sclerosis over age 60

Le H Hua, Tracey H Fan, Devon Conway, ...
First Published March 20, 2018
Research Article
https://doi.org/10.1177/1352458518765656

Abstract

Background:
The risk–benefit ratio of continuing immunomodulating disease-modifying therapy (DMT) in older multiple sclerosis (MS) patients is unknown.

Objective:
To evaluate clinical and patient-reported outcomes after stopping DMT in older MS patients.

Methods:
Retrospective, observational study identifying patients from our MS clinics who were aged over 60 and on DMT > 2 years. Cause-specific Cox proportional hazards regression modeled time to discontinuation and time to reinitiation of therapy. Pre- and post-discontinuation comparisons of Performance Scales (PS), Timed 25-Foot Walk, and Patient Health Questionnaire-9 (PHQ9) were analyzed using linear mixed models.

Results:
A total of 600 patients were included, with 178 (29.7%) discontinuing. Discontinuers were 2.2 years older, had 3.2 years longer disease duration, and 1.6 years lesser treatment exposure. Providers initiated discontinuation more than patients (68.0%). Only one clinical relapse occurred in discontinuers. A proportion (10.7%) reinitiated DMT. Provider-initiated discontinuers restarted less often (hazard ratio (HR): 0.34; 95% confidence interval (CI): 0.12–0.9). In discontinuers, relapsing-remitting patients had lower PS on average than primary progressive. Provider-initiated discontinuation was associated with lower PS than patient- initiated discontinuation. PHQ9 scores appeared higher in those stopping intravenous (IV) therapies than interferons. Lower PS and PHQ9 indicate better outcomes.

Conclusion:
Most patients over age 60, who discontinued DMT, remained off DMT. This study provides real-world data that may guide clinicians considering discontinuing DMT.
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Old 04-03-2019, 01:05 PM
malpais malpais is offline
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Default Over 60 and on DMT

At age 61, some mild but disturbing symptoms (MS hug, arm tingle) prompted me to pursue diagnosis. It took six months and going around my obstructive PCP to finally get the MRI that showed spinal lesions. I then was able to see an MS doctor, who allowed me to choose my DMT. I started on Avonex, switched to Rebif after a year due to MRI showing continued inflammation. I'm doing well on Rebif and find it alarming to think that persons over 60 would be denied DMT.
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Old 04-04-2019, 12:12 AM
penkalet penkalet is offline
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I agree with Malpais. I was DX at 62 and 72 now.
I am on Ocrevus and doing good with no intention to stop.
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Old 04-08-2019, 09:03 PM
GoatHerder GoatHerder is offline
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Well, time will tell. My evil insurance company decided at 60 that they didn't want to pay for Avonex any longer. I've been on it for 18 years.

Off of it for 3 months now but it's still early in the forced experiment!
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Old 04-11-2019, 06:39 PM
Suebee Suebee is offline
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Ohh this is just a horrible injustice to gamble with the quality of life of MSers like this. I couldn’t get more info on who funded this research but I’m sure NIH and other govt backed agencies are pleased. How can a scientist possibly come up with a predictive formula to determine benefit or lack there of from discontinuing??? Goatherder, I hope you use any sign of activity OR increase disability level to resume. Or be really pesky and keep appealing insurer. did they cite scientifica evidence or insurer policy?..
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  #6  
Old 04-13-2019, 11:13 AM
AMFADVENTURES AMFADVENTURES is offline
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Default The Talk

I had "The Talk" with my neuro just a couple of weeks ago. I'll be 69 yo in a couple of months. He brought it up by asking me if I thought the Rituxan was still doing me any good. I explained how 5 years ago I experienced a two year long period of rapid continuous progression in my MS which slowed significantly within a few months of starting Rituxan and which has not returned, except for a brief time when I tried to extend the period between infusions beyond 9 months. He responded that he had heard similar stories from a few others, implying that not all MS patients felt that their DMT's were still necessary. Perhaps that's true.

But, I suspect Suebee is right. Insurance companies, Medicare and Medicaid all have a lot to gain from showing statistically meaningful evidence that the Burnout Theory is viable and I don't doubt they will ultimately be successful. Add to that the increased risk of serious sideffects from staying on a DMT with age and there certainly are valid reasons for considering discontinuation. However, like the rest of you, I am not ready to give up my Rituxan yet. Hard to say how this will all play out but I do think that advocating for choice with neurologists in the mean time couldn't hurt.

Larry
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Old 04-15-2019, 11:48 AM
Beth Beth is offline
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Default Crazy!!!

What about the DMTs like Tysabri that create a rebound effect when they are discontinued!?!!! I hope they get this straightened out soon, and not put everyone with MS in the same "box."
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  #8  
Old 04-17-2019, 06:03 PM
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These are all great points. I would love to believe MS just burns itself out, but that's just not usually the case...
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Old 04-25-2019, 02:57 PM
AMFADVENTURES AMFADVENTURES is offline
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Not to beat a dead horse but I happened to see this today. Dr. Gavin of BART'S Blog notoriety is an advocate of continued disease treatment in people with MS as they age. It's a worthwhile read even for the younger, recently diagnosed, as it emphasises the importance of early intervention as well as the continued importance of maintaining brain health as we age. A must read for the ageing MSer!
https://multiple-sclerosis-research....-to-affect-me/

Larry
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