Hi everyone. I went to see my neurologist yesterday, and was not expecting this bit of news. I had my MRI's of brain and C-spine last week, and, thankfully, all was stable. So far, so good. Now, a little history: after being on 7 different DMT's over 25 years, I, like many of you, had been reading a lot these past few years about older folks with stable MRI's being able to stop therapy. I went to my neuro back in August and had a long talk with her about this. At 64, I felt that I wanted to stop my therapy. My doctor agreed and even told me that she was taking many of her older patients off DMT's in their 60's if they wanted to do so.
Fast forward to yesterday. My neuro told me she had gone to the ECTRIMS meeting in Italy in October. The new consensus, she learned, was that DMT's should never be stopped. Ever. She was told that "aggressive treatment" was warranted even as patients age into their 70's and beyond. Even with stable MRI's for several years. She told me she wanted me back on therapy as soon as possible.
Talk about a 180 on treatment options! My head was spinning! I am not ready to jump on this new theory, and told her I would think about it and let her know. She pointed out that I could have a bad flare up being off therapy, and I pointed out that over 25 years, every time I had a bad flare up, I was on a DMT! She realized that I was right and that was that.
My head is still spinning and now I am second guessing my decision to stop therapy. I spent months doing my due diligence, reading all the material I could find about stopping therapy, and felt really good about my decision. Now, everything I thought I knew has been turned upside down.
Any thoughts or advice or words of wisdom? Arrgghhh...😫😫😫
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Helpmeup
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I am not against DMT's; I'm simply against them for me. I'm 58. Been dealing with MS since I was at least 15, but I didn't get a diagnosis until about 5 years ago. At that point, the neuro felt that Ocrevus was my only option. I tried the first two half-doses, had too many complications, and stopped it. My relapses occur only every 3-4 years, and we discovered with the last one that Solumedrol works wonders.
I have, for all intents and purposes, been dealing with MS "naturally" my whole life. Even if I'd gotten a diagnosis in the beginning, there were no treatments back then. Maybe I'd be better off if I'd had one; maybe I wouldn't. MS has just been such a part of my life for so long now that I don't think of it much differently than I do my glasses and increasingly-gray hair. It's definitely a PIA, but it's difficult to pinpoint a culprit when so many of my current issues could be attributed to the normal part of aging.
No one can make this decision for you, but I have no regrets.
Thanks so much. Much of what you said is true for me as well. After many different DMT's, my last choice was Kesimpta, basically Ocrevus as a monthly shot, and I had such bad side effects, that I quit after 6 months of feeling awful. I also average a flare up every 4 years or so. My only issue with the SoluMedrol is that it eventually caused my osteoporosis, so I'm hesitant to take it any more. I'm with you on the what is M.S. and what is just aging. Very hard to answer that one. I really felt good about my decision to get off all these drugs, and I'm leaning toward sticking to my guns. The thought of starting yet another therapy, makes me sick just thinking about it! Really appreciate your input.
I don't know anything about this, but I think it's not very nice because you thought you were done. It may not be a new theory, there may be enough evidence now to show the old "burn out" theory of aging and MS was wrong. If she's offering a treatment that stops, and there are not many, it may be less depressing to go back on meds. Can you just enjoy the holidays and worry about this next year 🫣 I'm sorry for your new worries and the terrible timing.
Thanks so much. I am definitely going to wait a while before making my decision. After my miserable experience earlier this year with Kesimpta, I am not ready to start another drug. I'm seeing my neuro in March, which gives me plenty of time to think about it. Gonna try to put it out of my mind til then.
Thank you so much for sharing these critical words from your neurologist. I watch many of Dr. Aaron Boster's videos on YouTube too, and he also says to NEVER stop DMTs. Before it was "agreed" that stopping DMTs at age 65 was a typical choice. But now it's a LIFETIME.
That's why I switched from Avonex from September 1997- March 2022 to Aubagio April 2022 to present. Aubagio is a once-a-day pill that's been on the market for ten years and has a very good safety profile too. So, taking Aubagio forever works for me.
Yes, I don't like the hair thinning PLUS with the hair shedding with Menopause it really stinks, too. But, I have many stylish hats! LOL
Thanks so much for your input. I watch Dr. Boster videos too! So informative! Glad to hear the Aubagio is working for you. And it's always fun to add to your hat collection! 😂🤗
Thanks so much for your response. I was on Copaxone many years ago, and it worked for about a year and a half until the lymph nodes in my groin swelled up to the size of eggs and I had to stop the meds. I completely agree that the side effects of the meds are really awful. As I said in my post, I took 7 different ones over the years, and each had its own set of side effects, some worse than others. That's why I was so upset when my neuro said I need to get back on them. I think I'm going to ignore her! 😂
I don't 🤔 think I'll ever stop taking my DMT ( currently vumerity) after reading 📖 some of the "horror" stories of ppl who did. I've had MS- diagnosed- for 28yrs. I think I've had MS since I was in my teens.
I'm interested in hearing your input about Vumerity (mostly out of curiosity, as my MRIs have been stable since the late 1990's. Yet, I've had a few "mild" flares during stressful times when still on Avonex, 2003 ON & 2009 left-side numbness, but BOTH were during extremely stressful times in my life).
FWIW, I see the commercials almost daily about Vumerity and the fact that it's a once-a-day pill too interests me too. Although Keisimpta, a once-a-month injection I feel is more attractive than Ocrevus. But I love a once-a-day pill.
I'm interested in how long you've been on Vumerity and what side effects may have? How long has it been on the market? Thanks so much! 😇🙏🙂🤞
Hi DMO329 🙂It's not a once/day pill ( though I wish it was) I take 2 pills every 12 hrs- upon investigation- It's because the molecules are larger, you need to take 4 pills/day.
I've been on Vumerity for two years now with no side effects unless I forget to take it on time or if I don't take it with food. The effects of the above are flushing or upset stomach. My MRIs are stable & I have no MS symptoms as of today & haven't had for 3 years now. My MS has gone into remission. I don't know if Vumerity is keeping it that way or not since it was in remission before I changed from Copaxone to Vumerity. But everyone is different & how we react to the meds is different.
I hear you! I had symptoms for years before my diagnosis 24 years ago. So glad to hear the Vumerity is working for you. I tried it after 7 years on Tecfidera, and unfortunately, had bad side effects and had to stop. Thanks so much for your input!
I'm sorry about that, I had heard that also but I had a relapse in 2014 & I was 61. So my question was How do they know who will & who won't? It was decided I would stay on treatment & I was put on Ocrevus. January I will start my 6th year. I'm doing really well on Ocrevus. Prayers and well wishes for all. Maru
Thanks so much. As you point out, there's no way to predict who will get worse or who will get flare ups or what side effects the meds will have. We all have such different experiences with the same disease. I'm so glad to hear that the Ocrevus is working well for you. All the best to you. 🤗
hi I’ve been taking Tysabri since 2008 and it helps a lot and no real side effects except tired the day of infusion. I hope I can stay on it forever or find an alternative when I’m older since I have to travel 3.5 hrs to get my infusion once a month. I am concerned about getting coverage when I’m 65 and hope that when I turn 65 I still will be eligible.
I was diagnosed 34 years ago at age 40. I took Avonex for 16 years and stopped taking it at age 67. I was physically crippled by the Avonex but I had been scared to stop it. I immediately started feeling so much better without that poisonous drug. Despite having secondary progressive disease I have done quite well and I never want to take a DMT again.
Thanks so much for your input. I did Avonex when I was first diagnosed and had to endure the three days a week of "flu like symptoms" for years. Each of the DMT's I tried had side effects, some worse than others, some intolerable. I stopped the last one (Kesimpta) in March after very bad side effects, and feel so much better now that I have cleared all the drugs out of my system. At 64, I really felt good about stopping permanently. For me, it seems the drugs can be worse than the disease. 🤗
Okay, here's my input. I'll be 84 in July. I was diagnosed when I was 70 and the "wisdom" at that time was that I was too old for DMTs. So they have never been prescribed.. MRIs show no new lesions, and I've had no bad falls in 5 years, but my ON, TGN, fatigue, spasticity flare briefly then subside. My gait is more impaired and I am less tolerant of temperature extremes. Some days I have nerve pain that can be dulled with OTC pain meds...but though I am a bit more compromised than those I know in my age group, it's hard to know what is due to age and what is due to MS.
Thanks so much for sharing. I agree with you. It is very hard to know what is disease related and what is caused by aging. All things considered, it sounds like you are doing pretty well. Take care. 🤗
I came off of Avonex in April. I don't have noticeable relapses, but do have brain atrophy which is causing my symptoms to slowly increase over the last number of years despite no relapses. I will need to discuss this with my neurologist at my spring appointment. Thanks for the info!
BTW I was dx at age 26 and started Avonex at age 29 until age 55. My MRIs have been stable for twenty-five years of Avonex, but I did have sensory flares in 2003 ON and 2007 left-side numbness during stressful times. But, I have MODERATE ATROPHY and SEVERAL BLACK HOLES even though I "stuck with Avonex" for twenty-five years.
Since I am choosing to adhere to current MS specialists advice and stay on a DMT for life, I choose to switch to Aubagio at age 55. With hair loss from the DMT plus the shedding with Menopause, my hair is soo thin that I've invested in many cool, stylish hats.
FWIW, I am blind in my right eye and have severe fatigue and cognitive problems, my biggest disablers IMHO. As I'm older now, I must wear Always Discrete Panties whenever I stray outside, too! Yep, MS is a progressive degenerative disease, although we can't see it, right?! 😥
hello, you bring up a really good question. I’m sorry you are faced with this decision. I’ve been on six different DMTs since 1999. I was diagnosed in 1996. Back then, there wasn’t a hurry to start one. I plan to stay on one as long as my neurologist thinks I should be on one. I’m currently on Ocrevus. I’ve been on it since 2019. I’ve spent the last 27 years trying to take advantage of what’s been available.
My mother was diagnosed with MS in 1970 when there were no options except for steroids. I often think about where she was at my various ages. At this point (age 58) she was already a quadrapalegic. my goal has been to do as well as I can and take advantage of all the options as much as possible. I’m grateful for that.
Thanks so much for sharing. You really make a very good point about wanting to take advantage of available therapies. Sounds like the Ocrevus is working well for you. My last attempt at a DMT was Kesimpta, which is very similar to Ocrevus, but I had terrible side effects and had to stop after six months on it. After going through seven different therapies over the years, I am, at least for now, glad to be on a "drug vacation". All the best to you!
I'm 58 year old, diagnosed 6 years ago and on one the most aggressive DMTs available to me at the time, Ocrevus.
The science says that your immune system is less active as you age, and I believe it. Maybe a relevant path could be either be able to space infusions or switch to less aggressive medicine.
But I would not think of this until in my 70s. That said, blood tests should reveal where the immune system is at.
Thank you so much for your post. You point out exactly what I have researched about the immune system slowing down as we age. That's why I was taken aback by what my neuro reported as the latest research being exactly opposite! The last few years, I have noticed that I am having more severe side effects from DMT's, and I have learned to listen to my body when it starts yelling at me. It really makes sense to me that our immune systems slow down, and I really thought at 64 (almost 65) that I could finally stop DMT's after taking 7 different ones over 25 years. I have considered an option that you mention, which is going back to a less aggressive drug. I really appreciate your input. Take care.
I have always been on a DMT, and have never had a flare up since my diagnosis, Helpmeup , but I have PPms, so no flare ups, just a steady decline. I have often wondered if my DMT helps to slow the disease, and no DMT would accelerate its progression. I don’t want to find out the hard way. I will continue my DMT adherence until my neurologist tells me otherwise.
Thank you. You bring up such a good point. Over the years, I have wondered if the DMT's I took were helping or not, and there's really no way to know for sure. One of the great mysteries of life, I suppose. 😂. It's good to listen to your neuro for advice. That's what confused me. This summer, my neuro was in complete agreement with me to stop my DMT, and this week did a complete about face on me! 😖. Take care.
At the age of 55, having been on dmt’s for 10 years, I stopped taking them completely. It’s a personal choice, but I felt strongly about it. I have come to realize that it was the perfect choice for me. My symptoms have improved significantly. I am now able to do things that I never dreamed I would do again. I go hiking, play golf, bowling, and so much more. My neurologist says that I am a miracle. I don’t know about that, but I sure am grateful that I stopped the medication. For me it was life changing. Good luck with your choice and please let us know how it goes. 🤗
Thank you so much for sharing your experience! It's comforting to know that for some, it can be a very positive change. I was on DMT's for almost 25 years, and suffered the different side effects of each one. Not sure if I'm going to start again, but I will tell you that the "vacation" I've been on for eight months now has been great!🤗
Helpmeup, I'll be 84 in a few months and am still doing Copaxone (Glatopa 3 times a week, actually). I was on Avonex for 3 years, then Copaxone for nearly 3 years, then 10 years on nothing, and now Glatopa for 3 years. I'll stick with it so long as it's not causing me too much grief. Now and then I'm tempted to stop those shots and just coast along and let MS take its natural course.
You mention that you had some relapses while taking DMDs. You might have had even more relapses (or worse ones) if you hadn't been taking a DMT, right? That's the funny thing about DMDs for MS--you really can't know if they're helping you. If the side effects are intolerable, though, I can really understand stopping them.
But on the offchance that this DMD I'm taking just might be helping, I'm still taking it. I like to think I'm doing something to keep MS from getting worse even if the "something" I'm doing isn't really doing anything.
Thank you so much for your insight. You make a lot of good points. As you say, it's so tricky to know if flare ups would have been better or worse or more frequent or the same. If I wasn't having such nasty side effects, I would most likely stick with it. I started on Avonex, and moved on to Rebif, Copaxone, another go at Avonex, Tecfidera, Vumerity and Kesimpta. It was frustrating with all the changes and I began to feel like a lab rat. Now I am considering going back to a less "aggressive" therapy. I am so glad to hear you are doing well on your therapy. I believe if you think it's helping, then it's helping. Keep up the good fight! All the best. 🤗
Yes, some side effects can be brutal. I passed out and fell one night a few hours after an Avonex shot. I didn't want to continue on it after that. I'd already been through at least a year of the "flulike symptoms" while on it, and those had pretty much gone away, but then there was that time when I just passed out. Avonex may have had nothing to do with it but I wasn't taking any chances.
I feel your pain. I know you read my recent post about having to think about a new DMT after finding a new lesion. You're intelligent and know how to research, so I'm confident you'll make the best decision you can for yourself.
Hi. Sounds like you and I both have decisions to make. It is really difficult though, even when we do the research. Sometimes it just comes down to listening to our inner gut and keeping fingers crossed that we've made the right choice. I wish you the best in moving forward.
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