Discontinuing DMTs: I have a thought now... - My MSAA Community

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Discontinuing DMTs

greaterexp
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I have a thought now and then (usually when injecting Copaxone) about when I might safely stop taking any DMT. I'm not unhappy with my DMT, but sometimes get a little weary of the injections, and I am happy with the safety profile and effectiveness for me. I stumbled across this article and thought someone else may find it helpful. I'm staying on the Copaxone until my doctor suggests otherwise or it stops working for me.

mdedge.com/multiplesclerosi...

39 Replies
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I was on Copaxone ten years ago I am currently on Ocrevus and don't want to stop

greaterexp
greaterexpCommunityAmbassador
in reply to Tazmanian

I’m so glad it’s working for you.

I’ve been on five different medications since 1999. No brakes in meds. Most of those 21 years were Copaxone and Rebif. Currently taking Ocrevus (and I’m 55 yo). Thankful to have medications and plan to take them ‘til the bitter end 😆😅

greaterexp
greaterexpCommunityAmbassador
in reply to Ethyrum

I think you're wise. It's wonderful that the Ocrevus is working well for you!

That study sounds like a waste of valuable research funds. To me, it seems to be common sense that if you are using a DMT & aren't having any relapses, then the DMT is working & doing its job. Then you quit because you aren't having any relapses and are surprised that you start having relapses again. Really? Did they need a study for that? Maybe I'm missing something but sometimes these studies seem like a Ph.D. is just trying to keep their job.

I have heard some people say that their Neuro said they didn't really need their DMT anymore because of their age. Usual aging is hard enough, I don't want to add more to that if I didn't have too. I'm not sure why they would think that someone in their 70's would want to feel even worse than they already do. I'm 65 and have no plans to quit with my DMT. As far as I'm concerned I will be on one until I'm 6 feet underground.

Ethyrum
Ethyrum
in reply to hairbrain4

I personally think this research question is a fair one and a good one to ask. People often think research findings are “common sense” until the results are unexpected. Perhaps there is an age, a number of years on medications, or some other variable when a doctor might recommend stopping the med?

greaterexp
greaterexpCommunityAmbassador
in reply to Ethyrum

That was my thought. I wondered if there may be a "magic age" at which I could safely consider stopping my DMT. As with nearly all science, studies' results may conflict with one another, but when I find a trend, I tend to take more notice. I hadn't looked into this subject much before now.

I became allergic to Capoxe - terrible rashes on arms and legs, not at injections site. Got double pneumonia with another DMT that wouldn’t go away til stopped it, had brain virus and stopped the next dmt, so neurologist said at my age of 71 I should stop taking any DMTs unless PPMS changed status. With my strict Wahls diet and lots of rest, little exertion, no stress, avoiding drama people, keeping peace with meditation, prayer, Bible and inspirational reading, etc, MS is maintaining status quo of pain, low cognitive function, lack of emotional control, insomnia, loss of memory and balance, vision problems, painful costochrondritis attacks, etc etc etc, I’m surviving without DMTs and neurologists. Now I am almost 74.

i also thought about stopping therapy going to wait on my next mri and see how i am doing

Jesmcd2
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They can't switch you greaterexp I know I ask this every time! 🙁 Stay Strong!!! 🤗💕🌠

greaterexp
greaterexpCommunityAmbassador
in reply to Jesmcd2

Sometimes my neurologist will ask me how I think I'm doing with the Copaxone. Do I think it's effective? Can I handle the injections, or am I getting needle-weary? She does see some progression, but it's in small bits, and so far my MRIs are stable. Since my disease isn't as active as many others', Copaxone seems to be enough for me right now.

Jesmcd2
Jesmcd2CommunityAmbassador
in reply to greaterexp

Stay Strong greaterexp ! You can do it! 🤗💕🌠

greaterexp
greaterexpCommunityAmbassador
in reply to Jesmcd2

I'm a tough old gal, so I'll plow through!

I was so happy I had a bad reaction to Copaxone. I Hated those shots.

Ditto. They have in my “allergic to” column of meds i am allergic to. After that i was on aubagio which made my hair fall out in clumps and what was left looked nasty so i quit all together. Which also worked out for me. I got pneumonia and had to be on oxygen for 6 months. I also have asthma so wen the pandemic hit - well i need my immune system to be at fighting strength in case i get covid.

Long story short - i have had 2 relapses since stopping my DMTs but my MRIs seem to be holding steady with no active lesions. We shall see what my new neuro has to say in september. 🤞🏻

If stopping works for you, good for you! I'd love to have even 1 day without all the pills. I am on Aubagio now. For me, it's the one I did Not have a bad reaction to. Copaxone and Tecfidera, stay away!

Yes! I had bad reactions to both of those too!! Aubagio was ok except for the hair thing. I am so vain wen it comes to my hair

My hair wasn't touched. After the other two I kept waiting for something to happen but nothing did!!

Lucky! Mine fell out so bad it broke our vacuum cleaner! Broke my self esteem too. Its all good now tho.

Sorry that happened to you! I wouldn't need hair falling out to break my self esteem. I've never had it. Gotta have it to break it!

My hair is all i got left of the old me. I so regret putting blue in it. But hair does grow so next time maybe pink.... the dif colors make me smile 😁💜

Ladies—-

Just had to interject

I used to think 🤔 hair was a BIG deal too.

Until my sister got cancer and lost all hers

I came to the conclusion that hair doesn’t make a person

She ended up losing all hers and when it grew back, she dyed it bright pink.

I actually have come to like ball caps—-

Guys have it soooo easy. 😆

Well as most of you know my neurologist mentioned the last two appointments about going off DMTS. I have been on seven different DMTS over 26 years and over age 65. Most recently Aubiago the last two years and everything was stable. I decided to give it a try four months ago and stop 🛑. Have the same problems as before and nothing new and actually a little less fatigue. So far has been good. My good friend that’s wheelchair 🦽 bound stopped her copaxone three months ago after 22years and is 73 years old and is the same as when taking. She has had MS for 30 years. She has been stable the last ten years. So anyway so far both of us are doing the same 👍🙏😊 Ken 🐾🐾

The article opened: A significant minority of patients with multiple sclerosis (MS) who were in remission for at least five years before discontinuing disease-modifying therapy (DMT) experienced disease worsening upon stopping their medication, according to research presented at the 67th Annual Meeting of the American Academy of Neurology.

"A significant minority" I went into remission after stopping my DMT, of which I tried several, for many years. My Neurologist reviewed my history after living with flu-like symptoms after every shot. (Originally I had the original couple weeks, then nothing. ) Anyway, my history showed the DMT's were not helping, and with the Neuro's knowledge of others like me, who the DMT's didn't seem to help, he suggested I stop.

I did, like magic, all the drugs I depended on, for this side effect, and that, were no longer needed.

I did get worse. Went essentially comatose for 2+ years. But, when I drastically changed my diet, fighting the comatose effect, by only juicing fruits and veggies for about a year and a half?, I seemed to be winning?

I did similar for another year and a half? Now I'm doing great. On no meds whatsoever, except the CBD flower I vape at the suggestion of my Neuro. Yes, I still have a 101 M.S. battle wounds, BUT, I'm again walking 10K+ steps a day, I can with difficulty and lots of post it like note helps, pull off some great meals, day after day. And again, accomplish some engineering like tasks, if it doesn't involve balance, or non-written tasks.

It's been well over 5 years since my doctor pointed out, I fall into the "old farts' category where M.S. can seem to let up. But, not without battle wounds. But Hey, I'm still fighting. I did loose the cane I could not live without for 5-1/2 years! Just don't ask me to get on a roof. I can climb the ladder. Just can't get onto the roof from the ladder.

Getting off DMT's after many, many years, since the inception, almost, has in later years helped me. Don't ever regret being on them. Who knows what I'd be now. Just, there may be a time to move on?

That is awesome and inspiring! I have been off my DMTs for 3 years now and i am still holding steady. I for sure need some meds - like ambien cr and blood pressure meds. And i have to avoid stress for fear of a relapse. But i think that is all of us maybe? 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️

Thank u for sharing!

I stopped taking a DMT just about 3 years ago. I had previously been on Copaxone (6 years), the Gilenya (5 years); in both cases I developed a severe allergic reaction after years of use. Since the last reaction was so intense it took months to recover; I was off meds for about 8 months. The DMT were working as no new lesions developed, but what do I take that will not cause me severe harm. I am that rare patient who gets the worst of side effects and is a high risk for PML, lucky me. My doctor and I, along with family, had an thorough discussion and agreed to remain off DMT's until my next MRI. As I said its almost 3 years (this August), no changes in my MRI. Research is believed to have shown that there can be a dormant period, appears to be common in late 50's to mid 60's. Don't know how true all that is because as we all know MS is very individual. I stopped the DMT's at 56. I will say my abilities are diminishing and the MS is making my life a challenge, but those symptoms are a result of the initial damage the MS brought to me and trauma over the past couple of years.

If you are unhappy or uncomfortable with your meds, talk, really talk to your doctor. It's your body, you do what you think is best for you. There are many meds available now versus 10 years ago, find what works for you and what is comfortable for you. MS isn't going away, but you control it, it does not control you.

Just my two cents. Best of luck in your decisions.

Not sure of your age but my personal belief is that your opening the door to future issues.

I just the other day from Novartis on a new medication that seems to be directed to older patients. The name of it is Mayzent (siponimod).

It is still a mild DMT but works to keep your current lessons from getting worse. Not exacerbations just a combination of age and MS.

Trial results were impressive. I am on Ocrevus and don't have a need to change but for older patients it's worth investigating.

greaterexp
greaterexpCommunityAmbassador
in reply to JTZES

I’m not actually considering stopping, but just get needle weary from time to time. I thought I’d look at studies about “older” patients stopping DMTs. Some doctors feel it’s fine to stop at a certain age. I am only convinced by my reading that it’s usually best to stay on one as long as one can tolerate it.

JTZES
JTZES
in reply to greaterexp

Did you look up the new medication that I mentioned. It's one pill a day. No needles.

greaterexp
greaterexpCommunityAmbassador
in reply to JTZES

Yes, I'm familiar with it. We have one person on the forum taking it, who reported some unpleasant side effects, if I remember correctly. I'll just continue with the Copaxone. But thank you!

Interesting article. I have wondered the same. Have heard about some neuros saying can stop with age although i do not know that my neuro agrees. After my initial attack that led to diagnosis last summer, i am too afraid to chance not being on a dmt. I delayed my infusion for 2.5 months due to covid and was petrified of a relapse. Luckily there are so many dmt options for all of us now a days.

I was on Copaxone, then Tecfidera, and now Ocrevus, greaterexp I often wonder if I should discontinue any DMT. I always ask my neurologist this question and they say no. I wonder if there's an age when the insurance company says that it's no longer covered. There has been some whisperings about this. Again, my neurologist says that there is nothing that they are aware of that they have heard. So, I will continue to use a DMT until I am told not to, or I expire, whichever comes first! :-D

greaterexp
greaterexpCommunityAmbassador
in reply to carolek572

I think you’re wise!

You have been bamboozled! :-D

You are tough! I got off copax after 8 years 2 years ago. Glad to be switched to orals but now the orals aren't working so much either. Glad your symptoms are minimal. Keep being tough! Going off would be the experiment you don't want to risk, right?

greaterexp
greaterexpCommunityAmbassador
in reply to Sandydemop

No, I’m not going off. I found that article interesting and confirming about staying in DMTs.

good deal. Do you have someone at home to help you with the injections in hard to reach areas?

greaterexp
greaterexpCommunityAmbassador
in reply to Sandydemop

No, but I can only use my hips and abdomen, which I can reach pretty well. The other areas just have no fat layer, except my arms, but i always have a bad local reaction there, even with the Autoject. It's fine.

I never did my arms. too hard to reach.

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