Has anyone gone off their DMTs?

[BigMar7]

I have read that as you get older the DMTs no longer work. I brought this subject with my MS doctor at my last appointment and he looked at all my MRIs and spinal scans for the past 12 years and we decided I could try going off Copaxone which I have taken for 12 years at the end of this month. I will do a MRI in January and follow up with him in February. Has anyone gone off their DMTs and been successful? Anyone with bad reactions? I have RRMS.

[Nom_De_Plume]

Hi BigMar7 , I can't comment on "as you get older the DMTs no longer work." I did stop Copaxone for a time, earlier in my diagnosis. and I believe that was a mistake. I was in my early 40's and it was about 2 years after I was diagnosed.

[agapepilgrim in reply to Nom_De_Plume]

Nom_De_Plume yep, research shows as you get “older” DMTs don’t work. Permanent damage. Guess that’s why first contrast MRI at age 69 neuro said white matter disease; MS won’t be totally active til 80! (He retired, the foolish man).. But was sent later by cardio to MS specialist and here I go on the merry go round of DMTs! But, always told “this may not help at your age and very suppressed immune system, and other “comirbidities” (that word cracks me up- so morbid like death but now means other poor health conditions). Last letter to primary from neuro he wrote new DMT Tysabri and going for psych counseling (he demands) probably won’t help! After reading that, why not quit!!?? Yes, ‘‘tis true, after 70 nothing stops progression. All an insurance swamp. After all God only promised 3 score and 10.

[Kath55]

I read an article about people going off their med. These people were probably in there 60's and so

I hope it's true. I have four years to go. LOL

[agapepilgrim]

@bigMar7 I have same problem. Was on Capaxone, horrible full body rash developed. And Lesions are bigger and right side brainbI got angry and went off 8 meds, including Capoxone. No new symptoms, feel the same. And at 70, neuro said he didn't know if any would stop progres nèvgg

[erash]

BigMar7 i was on copaxone for 2 yrs, MRIs and disease stable. So discussed with my neuro and at age 51, stopped all DMTs.

Now 7 yrs later, MRIs remain stable but I do have disease progression.

Neuro says staying on copaxone may not have made a difference but I do wonder. More is now known about the benefits of DMTs beyond new lesions.

Wishing you the best!

[MrBigCat in reply to erash]

@erash, can you explain how your MRIs remain stable but you have disease progression? Thank you

[raegun67 in reply to MrBigCat]

I would also really like to know because that's me...BIG TIME!

[YLGram in reply to raegun67]

MRIs don't look at the full brain, mainly white matter connections. MRIs are of different strengths, commonly 1.5 tesla, now 3, research institutions, 7. The stronger the MRI the more contrast and therefore the more ability to identify lesions. I understand that gray matter lesions (that's the thinking part of the brain) really only show up in some 3 Tesla and above MRIs, not at the common 1.5. Ask your neurologist to go over the ability of MRIs very carefully with you.

[BigMar7 in reply to erash]

erash, my MRIs have been stable. As far as disease progression, I walk with a cane or walker, depending how my legs are feeling. Sometimes I have brain fog but it doesn't last too long. I exercise with my PT once a week, ride my bike 3-4 times a week and do my balance exercises at home. If the MRI I do in January shows activity I would probably go back on DMT. I also have 1 kidney so I am very careful about what I take. Thank you all for responding to my post. It's given me a lot to think about.

[MarkUpnorth]

I went thru many years of DMT"s since the days of the ABC drugs as options only. For more than half that time, I lived with flue like symptoms full time, easing only by the afternoon prior to my next injection. After years of life like that, my neuro told me that I should probably stop, as up to 80% of patients became intolerant to the drugs and/or it simply stopped helping. That was years ago, old drugs. But yes, I went off them, and life got better. Never had a relapse since, though it had been a couple years prior to stopping. It's been many years now, no relapses. Just a lot of baggage from the years of relapses. Was told recently that they believe many older ms patents stop having relapses, leaving them only with the baggage or "ms battle wounds". Yes, I have more than my share, but relapse free, and very slowly working on those accumulated battle wounds. So yes, it can get better after it's gone very bad, sort of like recovering from a relapse, but on a much grander scale!

Years half comatose from ms was my bottom. Serious nutritional changes pulled me out. I'm now a very firm believer in nutrition.

[Nom_De_Plume in reply to MarkUpnorth]

@markupnorth Would you please clarify, at a high level, the nutrition changes that you made? Thank you!

[MarkUpnorth in reply to Nom_De_Plume]

Eliminate processed foods, think hunter gatherer. Use Dr. Terry Whal's Protocol (paleo) as a guide, though I still do dairy. Mostly fresh fruits & veggies, argument ed with tastes of lean meats, fish, and seafood. But lots of fres veggies! Eliminate anything processed.

[Nom_De_Plume in reply to MarkUpnorth]

@markup north Roger that. Thanks! 👍🏼

[Brindisi1]

I am 70 and on dmt for 17 years. Had some "relapses" but never enhancing lesions but neuroS talk about more effective meds which I resist. Also upset about cost of meds. I am going to approach neuro next visit about discontinuing

I am having double vision but neuro opthalmolgist said due to lesion load not active lesions. Other opthomologist confirm same. On good diet and lots of supplements. Still walking driving less.

Still blessed!

Thanks for your stories

[greaterexp]

BigMar7 , I'm glad you asked this question. There doesn't really seem to be a clear consensus among neurologists about the benefits of DMTs after age 60 or so. I'll be watching the responses here.

Let us know what you decide and how you're doing.

[Midgey_Midge06]

I have been off my DMT's for a year and a half. I am 46 years old. I am gonna do an MRI in december. I made the decision because the side effects seemed worse than the benefits. I am trying to do the Terry Wahls protocol thing.

So we shall see what the MRI has to say

[ddeadred]

Way back when I was dx'ed, Betaseron was the only choice... Stayed on it 8+ years with horrible side... went off all DMTs for 5 years until I got bad... Then I got on Copaxone which I've been on 9+ years... Need to see neuro, so we'll see if we'll continue or if something else would be better... xo Cj Good luck deciding!!!

[agate]

@BigMar7, lately I've been hearing this idea that the DMTs stop working after you reach a certain age. I don't know if it's true but all along they've been saying that the DMTs haven't been shown to work on people with SPMS--mainly because there's no longer any inflammation going on at the SPMS stage. And since many people with RRMS become people with SPMS as time goes by, that may be part of the reason they've decided that the DMTs "stop working." It may be more that they just can't figure out whether they're working in someone with SPMS, at least sometimes. The MRI changes for SPMS aren't as obvious as for RRMS.

I was diagnosed when I was 39. It was clearly already SPMS at that time. I went on Avonex 21 years later, when I was 60, and stayed on it for 3 years. I thought I was too old for it to have any benefit, and I thought that my SPMS would also mean that Avonex wouldn't help, but the neuro seemed to want everyone with MS to be on one of the 3 or 4 injectable drugs that were available at the time.

A couple of years after stopping Avonex, I tried Copaxone for nearly 3 years. I decided to go off it because I couldn't see that it was doing anything for me but it was costing a pretty penny. Medicare/Medicaid paid for it entirely but why waste money on something that wasn't helping me--and might even be doing some harm?

I have Type 2 diabetes as well (diagnosed when I was 44), and watch my diet very carefully. I have very limited mobility, and my hearing and vision are far from perfect, but the MS has been progressing very slowly, and that's about all I can ask at this point.

I don't know if the DMTs stop being effective after a certain age but I do know that the effect of DMTs on older patients hasn't been studied much, and older people have quite different reactions to medicines in general.

[rlh1974]

BigMar7 I can't speak of age. I can only speak to age of the disease. Meaning, I have had at the time of DX, MS for over a decade, causing me to have DMT's not work because I had already progressed by the time they found my MS. That being said. I read stories all the time that DMTs keep progression at bay and you may have to switch types. But people have had MS for decades without progressing because of a quick as possible dx and getting on the DMTs. So, my point if it is making any sense, is this. I guess it depends on your body and how MS progresses in you.

Rob

[BigMar7 in reply to rlh1974]

Rob, what you said makes a lot of sense. I’ve had no new symptoms since being on Copaxone, just some days are good,some bad. That hasn’t changed since going off DMT. I am trying to eat more veggies and fruit and I work with a trainer once a week. I also get out and walk with my walker by myself as much as I can. I will see my neurologist at the end of this month, my MRI last month had no new lesions. I’ll see what he thinks. 😀

[Hidden]

Hey BigMar7 , hi there!

I truly believe that age is just a number!🎉

You're never too old to achieve your next goal. 😎N-E-V-E-R.

Keep your spirits high!

We're all kids at heart. Don't you think?!🎉😎👍😜

😊

[BigMar7 in reply to Hidden]

I sure do Supremo! It’s been more than a year later that I went off Copaxone and I’m doing great. I had an mri in January of this year and will see my neurologist in February. I have to admit I have had my doubts about going off the Copaxone, especially after reading more about it, but I am feeling the same since I went off DMT. I attribute it to exercising once a week with a paralysis injury and neurological speclist. She gives me floor exercises to do and I ride my stationary bike for 30 minutes every day. I got myself a Fitbit and count my steps everyday. 😀❤️

[Hidden in reply to BigMar7]

Aah..The Fitbit thing!

I really had, quite a different experience with them.

Yet, exercise helps. For sure.

[Hidden]

Okay!

Coming to stopping DMTs, I've a mixed response.

Earlier (in 2014), I was on Rebif. I had PPMS then.

As my MRI did not show any new lesions or any lesion-growth in my old lesions, my Neurologist advises me to be off from pricking needles all over my body

.

And off the Rebif, it shoots to SPMS (by 2018, in 4 years!

The Neuro was horrified.

He declares my MS was aggressive in nature.

I have no idea, now!

I plan to be on Ocrevus from April, this year. Ocrevus is not readily available in India.

How sad! 😱

[BigMar7 in reply to Hidden]

I will be thinking of you this April and hope you have a great experience with Ocrevus. Quite a few people in this chat room are doing that drug and you appear to be much younger than me so that’s probably in your favor. Good luck. 😀❤️

[Hidden in reply to BigMar7]

Thank you BigMar7 . 😎😊

[falalalala]

Yes.I quit Copaxone.

It was prescribed to me upon my diagnosis of MS. I went for it partly out of fear and misguided faith in the medical profession.

I had continual bad reactions to it.I threw out over 10K worth of it and was happy to do so.

A friend suggested Tecfidera.She likes it.

I had no interest in using a fungicide for furniture as an immuno-modulator.

As it stands,I take no prescribed drugs for MS and am doing very well in spite of it.

I am not suggesting that anyone stop their meds. One must do what feels right for their own sake.

[pamgarner]

I haven't, the only thing my dr told me is they don't like you to try to go off for at least 5 years,also dr counts success as no new lesions on mri, meds work toward that goal. I probably would be alittle frightened