At what age did you stop taking a DMD?

[Mamabug]

... then I will be talking it over with my neuro to see what happens next.

Thanks for the update! Keep us posted. I'm at the stage where I am also considering going off. I'm just 57, but probably haven't had a flare since 2014. I also likely need an MRI to help me decide. My MS specialist and I have talked about it too.

[90stangg]

It was about ten years ago when I was about 48 that I stopped taking anything. I too never had relapses, and have steadily gotten a little worst. My nero figured I had advance to SPMS.

I just had a MRI done in July. Really no changes. If anything my nero thinks a couple of the lesions have shrunk a little compared to 5 years ago. Have no idea how this would have happen. She thought my left leg was a little stronger too. For this I have a answer, I started elec-stim on my hamstring and thighs back around July.

I was dx'd in 1994 was on Beta for seven years, than Avonex for couple, Rebif for a couple and than tried Tysabri for 8 months wasn't doing anything for me so I quit taking it and have not been on anything since.

I still walk short distances with forearm crutches and the help of a HFAD. Use a scooter a GOGO (can't carry anything with the crutches) in house, and electric chair for walking the dog and neighbors and have a bigger scooter for in the yard. The bigger tires on the chair spin in the grass and the treads fill up with dirt. I used to collect cars and now it's scooters.

[SNOOPY]

I just had a MRI done in July. Really no changes. If anything my nero thinks a couple of the lesions have shrunk a little compared to 5 years ago. Have no idea how this would have happen.

Hi 90stangg

My Neurologist told me they see improvement in MRIs in patients that use the treatments as well as those that don't use the treatments. There have been drastic changes in my MRIs going from too many to count lesions to a very countable 2 in the cervical spine. I have never used any of the DMDs/DMTs.

[Tawanda]

I Asked MS soecialist

I asked my doctor his opinion on patients of a certain age (ahem!) discontinuing DMTs. His response? "Everyone is different."

He didn't exactly go out on a limb there now, did he?!

[Mamabug]

He didn't exactly go out on a limb there now, did he?!

No; he sure didn't. My doc and I have had more than one conversation about it. At our recent conversation, she indicated that she believed my most recent flare was likely in 2014. She talked about what changes she would make in the fx of MRIs if I decide to go off so that she can monitor what's going on in my brain.

Your doc seems somewhat unwilling to have a conversation with you about it?

[REG53]

I ask my neuro two days ago and he said "I don't believe in age burn out" or something like that.

[Leenyi]

Asked my Neuro last year when I was worried about drug costs. He said he wouldn't recommend it.

Now I'm back in the same boat again. I'm scared to death to stop or change meds since I've been relatively stable for over 20 years. But I'm sick and tired of worrying about the cost.

Wish we had more data. This thread helps. Glad for all the posts!

[Mamabug]

One MS-specialist neurologist/doctor's view on this idea, FWIW. A 5 1/2 minute video.

I listened to this video today.

I've been leaning towards considering going off within the next year or so.

I'm 57. My most recent MRI indicated that I had 3 new lesions between 2013 and 2018. Based on symptoms, both my MS specialist and I suspect they occurred during 2014; I had two flares that year.

Dr. Boster's recommendation to continue meds has me re-thinking that. My doc is comfortable leaving the decision up to me. She'd monitor with more frequent MRIs for five years.

[Leenyi]

Hi Mamabug,

I had watched that video a while back. That's part of my hesitation for ditching the meds.

I'm doing ok now. I can hobble around and do the things I want but another relapse could change that!

Wish we had a crystal ball or a little more data!

[Tawanda]

Your doc seems somewhat unwilling to have a conversation with you about it?

Indeed he is very stand-offish, but not sure what to expect from a MS Specialist/Neurologist. Lately I've had some questions as a rapidly aging female MS patient that I am too embarrassed to ask him! He's been my doctor for 15 years, and he is adequate, but I have been thinking about checking out a new MS facility in Waterbury, CT, which is very close to me. Of course he is the devil that I know and do I want to mess with the devil that I don't know? Hmmmm. Good question! Thanks for pointing this out, Faith!

[Tawanda]

Wish we had more data. This thread helps. Glad for all the posts!

Me too! And what about DMT risks? We don't even talk about PML or JCV anymore...! On the other hand, I also worry about being a person who becomes a part of the MS medical literature as "Patient X: She stopped taking a DMT to her own peril!"

[Mamabug]

Wish we had a crystal ball or a little more data!

Yup; that's what we need. A crystal ball.