Opting out DMTs may be ok for some

[erash]

I often wonder if I made the right choice stopping my DMT. This research makes me feel a little better about that choice 🙄 multiplesclerosisnewstoday....

[melack01]

Not sure how I feel about this. Just started medication, so don't know if it will be effective or not. I am already in their older patients group and I was just diagnosed.

[erash in reply to melack01]

melack01 i don't think it's a black/white decision. Many shades of gray. Most of what I've read says get and stay on DMT

Since I didn't, I was semi-assured it was an ok decision 🙄

[Bamfan1442]

Hello erash and good morning! I'm confused, been seeing a lot of the term "DMT" on posts but I just now remembered to ask what it means? lol I assume it's some kind of medication? Sorry I must sound ignorant here.

[CalfeeChick CommunityAmbassador in reply to Bamfan1442]

Disease Modifying Treatments, sorry, we tend to abrieviate the big words. I think I had to ask about that too😊 You are not ignorant. We are all learning something new every day about MS. Keep on coming here. I have learned more about MS in the last 10 years than I ever learned in my first 67 years. 😀

[CalfeeChick CommunityAmbassador in reply to CalfeeChick]

Should say last 10 months!

[Bamfan1442 in reply to CalfeeChick]

Thanks CalfeeChick ! I knew it must have been a medical term thanks for clearing that up for me.

[SueAB]

@erash , I am right with you! I had been on Beta Seron and Avonex for 10 years after my DX. I was told by Dr. Timothy Vollmer, the MS Director at Barrows, that since I had moved into SP and I was now over 50 years old, he would suggest my DMT was not doing me any good and that I discontinue it. It is scary to discontinue DMT'S, but it was the right choice for me, too.

[Fancy1959 in reply to SueAB]

SueAB, it's Fancy1959. I am amazed that your neurologist took you off all DMTS like that and has basically given up trying to modify your disease or control it.. And that's exactly what he's done if he told you that your age and the amount of time you've had the disease DMT'S are no longer doing you any good. My previous neurologist said that at 57, and having had the disease for 15-20 years, I was at a state where he could no longer do anything to help my disease. After I finished crying for two weeks I pick myself up off the floor and I found a new neurologist. If you go through the National MS Society 800 number of 800 Fight MS they will give you the phone number in your area of a practice of neurologist that they call their Partners In Hope. These doctors will never give up on you. There are always different alternative treatments you can try. And new therapies coming out constantly right now. Don't give up on yourself and don't let any doctor give up on you either. That makes me Furious just hearing you say that. I left my previous neurologist when he said that and I nicknamed him Dr. Death. And I was not going to be one of his patients that didn't matter any longer and just sat around waiting for my Ms to make me totally disabled.. The choice of course is yours so think long and think hard. My current neurologist is adamant that I stay covered because my MS is still active. With Secondary Progressive MS it is always active as in Primary Progressive. He doesn't want to leave any gaps in my coverage ever. And if new drugs come out he's always on the forefront of both the research of them and using them in his patients.

Erash, it makes me sad to think you stopped your DMTs six years ago and your neurologist has watched your steady decline in disability without saying a word to you about possibly trying other new DMTs. It's never too late to start back up to try to stop your disability from increasing. Remember what we see in our disability level it's just the tip of the iceberg. There's so much more that goes on underneath and within our bodies that we have no clue of. I'm not going down without a fight. I hope you all think about these words long and hard. But of course, as always, you are the best advocate for your health. The choice is yours. Good luck and God bless everyone's trying to solve this difficult decision and dilemma. 🤔

[erash in reply to Fancy1959]

Fancy1959 i have questioned my decision to stop DMTs. But...

[greaterexp]

The findings of research can leave us a little confused, since it occasionally seems to contradict what we just read somewhere else. Ah, science! I'm glad you posted this. We have to be our own advocates no matter what, and the final choices must be ours.

[Raingrrl]

@erash...that article is interesting. Thanks for sharing the link! Since I'm unhappily facing the decision to switch from Tysabri to something else, I had wondered if maybe due to my age, I can just stop using the DMT's. They certainly aren't tested in the older age groups, (nor in kids), so what knowledge do they really have about affects on older people?? But...as far as I know i'm still RRMS. I still have disease activity but not anything new on my MRI's nor new symptoms. Just the same old annoying symptoms that appear almost every day with varying degrees of strength.

[erash in reply to Raingrrl]

Raingrrl isnt that SPMS? Gradual progression w/o new lesions or new symptoms?

[Raingrrl in reply to erash]

I've wondered if I've slipped into SPMS too. I thought SPMS indicates decline. Some of my symptoms have worsened but some and up and down even multiple times a day. My neuro hasn't said I'm now SPMS but I also keep forgetting to ask. The whole Tysabri PML risk has most of my attention these days.

[erash in reply to Raingrrl]

Raingrrl

I'm still a bit confused about what determines RRMS change to SPMS. Since I can't get a consistent answer from my neuro, I think it's a shade of gray and have heard rumor that they refrain from labeling in case insurance decides they won't pay for DMTs in SPMS

[WAshingtongirl in reply to erash]

My neuro said it's no change in MRI, but a slow decline without actual relapses. Also that the solumedrol doesn't provide the symptom relief as it did before. And age--said that age is a contributing factor (at least in my case). 😉

[StacyHayward in reply to erash]

My rebif nurse reminded me that none of the DMTs are cures so a gradual progression of the disease doesn't mean the treatment isn't working.

[agate]

After 3 years on Avonex and nearly 3 years on Copaxone, I told the neuro I wanted to stop taking Copaxone and just skip the DMT for now because of my age and the fact that I've had MS for so long (diagnosed in 1980, and it was already SPMS at that time). He agreed that the Copaxone might not be helping me enough to justify putting up with the side effects (lipoatrophy, the possibility of a post-injection reaction that could be severe). I was very interested in that article.

[ddeadred]

The good news is that you can quit DMTs knowing they are till there if you change your mind... After 8+ years on Betaseron, I had a horrible reaction with dead tissue under my skin that basically got infected requiring surgical clean-out. Quit all DMTs for 5 years then started having big problems. Went back on one, Copaxone, which I still take 10 years later...

[ddeadred in reply to ddeadred]

BTW case you didn't know about me, MonSter Warrior since 1986...

[CalfeeChick CommunityAmbassador]

I appreciate the good read and have allot of confidence in your opinions. Having just turned 69, and it hasn't even been a year since I went numb, I'm hesitant to even start DMT's. Reading side affects is enough to make you think twice. If they would eliminate all my symptoms, I'd be first in line. My neuro doesn't think they would stop the leaden, numb and tingling in my lower legs and feet.

[erash in reply to CalfeeChick]

CalfeeChick

I'm not sure I made the right choice stopping Copaxone 6 yrs ago. My symptoms have progressed while my MRIs are stable. SPMS???

I am reading about those who have to deal with PML risks and DMT choices and I am so empathetic! Horrible choices to make. No one right answer

[CalfeeChick CommunityAmbassador in reply to erash]

I am JCV positive, erash. So have nothing to do with Tysabri or Tecfidera. I was approved by my ins. for Tysabri at no co-pay, but after reading and consulting with the newer Neuro, we decided never of those. He is willing to start me on Orecevus, but for now we are just using meds that try to treat symptoms. Gabapentin and Modafinil.

[kdali]

erash This article will not make the pharmaceutical industry happy 😂

It is nice to see support for those who opt out of meds.

[StacyHayward]

For me I'll stay on rebif. No doubt in my mind it has totally slowed down this disease. But everyone has to make their own decision.

[BillD999]

erash , this is a personal decision that everyone has to make with their dr. It doesn't help that we still don't have a clear definition of the line (if there is one) between RR & SP. I know there are neuros who will recommend patients with SP stay on a DMT that is really labelled for RR on the small chance that it will slow disability. This may be one reason a dr might hesitate to label a patient as SP because that might disqualify the patient for the med. Another dr might refuse to prescribe a med because of that labeling and he thinks the chance for a benefit is too small or he just believes in following the rules.

As someone with SPMS, my own experience with DMTs (Copaxone, Rebif) was that they were not stopping the progression & were therefore not effective. I don't think they were even slowing it down, so I am totally comfortable with my decision to stop those. But someone else might see some benefit where I didn't. Like everything else with MS, very individualized & very personal.

[Nom_De_Plume]

Hello!

I would caution against stopping DMTs and have a few thoughts to share with readers in general:

1) I believe that MRI's only tell part of the MS story. As a diagnostic tool, they're among the best we have right now, but I think we need more tools. I am told my disease is "stable" on MRI, but, since my symptoms continue to get worse, that is enough to tell me that MRIs don't tell the whole picture and we shouldn't let "studies" involving the "absence of active lesions on MRI" dictate treatment decisions. (I am all for research, and had been an active researcher myself, so don't get me wrong! We should just recognize its limitations.)

2) Not seeing active MRI lesions may be evidence that one's current DMT is working, not that the DMT isn't doing anything for us.

3) Sometimes a little knowledge is a dangerous thing. I was taking Copaxone at one time. I read that it decreased the number of relapses by 1/3. I hated the daily injections and the burning afterwards. I averaged one relapse per year at that point. I figured, wrongly, that I would rather have one relapse per year than 2 relapses over a 3-year timespan (the equivalent of 30% less) if it meant I could stop the daily Copaxone injections. What wasn't conveyed in the study literature, but which was conveyed by my neurologist, is that some clinicians believe there is underlying damage that accumulates over time when we're not on DMTs, and which may not lead to overt relapses, but, it accumulates none the less, and does eventually manifest itself. My neurologist said then that I was now behind the eight ball and we needed to try to catch-up. Looking back, I regret that I stopped my DMT. This also further illustrates the point that not all study data (MRIs, efficacy data, etc.) is the final word on a topic.

4) I wasn't able to find the details of the actual study the article was based on, but my sense is that it was a meta-analysis of pooled patient withdrawal data from multiple studies. The problem I have with this is that follow-up data is relatively short for most studies. The longest I have seen is 2 years. In my opinion, that is not long enough to determine "outcomes" for MSers who withdrew from treatment studies. As noted above, a pt may not have a relapse in the space of 2 years, but may accumulate disease "burden" that is detrimental and manifests itself later. If you stop looking at the 2 year mark, for example, and make your determination then that it made no difference to these patients that they stopped, I think that is not adequate data collection and the conclusion may be misleading.

There is no one-size-fits-all solution to the question, but I hope I have introduced additional points my fellow MSers will consider when weighing treatment continuation/discontinuation decisions!

[erash in reply to Nom_De_Plume]

Perfectly said Nom_De_Plume

[Kompany]

I’ve tried at least 3 DMT’s & had a poor reaction to all of them.. After finding a doctor who actually read my previous dr notes, she realized my body couldn’t handle DMT’s available at our appointments, I asked about trying CBD.

Unfortunately I got sick with an infection & went a few days without the oil 😢. My body has reacted poorly to not having the CBD oil. I started to just drop it under my tongue after I get up in the & half way thru the day. That’s been working for me 😁.