I would like to know how many ms people have been told that when we reach our 60's (age), relapses become very rare and being on any dmd may not be beneficial or necessary. Thank you!
I'm In My 60's: I would like to know how... - My MSAA Community
I'm In My 60's
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seshultz
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38 Replies
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Hi Seshultz, Please excuse my ignorance but what is a dmd? I am always trying to learn new things and am unfamiliar with this acronym. Thanks FiddleStyx
FiddleStyx dmd is disease modifying drug, blessings Jimeka 🌈 🦋
Jimeka, Thanks for the info. I believe there are no stupid questions. Hope everyone else has the same philosophy. Have a nice evening! FiddleStyx
FiddleStyx I always say there is no stupid questions only stupid mistakes.
I'm glad you got your answer. I'm sorry I didn't see your question before. I just wanted to say, there are no stupid questions! I have questions all the time and sometimes afraid to ask for fear I won't look so "smart"...lol. I always feel relieved, though, when I know the answer. You take care. Oh, and I love your name. Nice to meet you, FiddleStyx!
I have read that this may be true, but I would sure ask your doctor about it. I'd hate to think that I may suffer any relapses that may have been prevented.
Thank you. I appreciate your opinion. I have not gone to my neuro for some time. He didn't seem to believe in that. He finally did say, well, you can try going without a dmd for a time and we can do an mri, see if anything is any worse. Well, tell you the truth, that didn't make sense to me. Mine had already gotten worse. Many more ms lesions, but I don't want to go on anything. I'm taking a chance I suppose. I had an aneurysm (brain) in 2015. August, 2017, I had a colostomy. It was an emergency and get to have it reversed end of this month. There are too many things to think about. Lately, I have noticed my back spasms are coming back, so may have to get something for that since they took me off of med when in hospital. Life has become extremely challenging and I just can't complicate it any more than it is. I know, you're probably thinking "but if you don't go on something, you may invite more complications". Everyday is a bit of a gamble. I have learned that over the past 2 years. I was just very curious if anyone else had been told that it is rare to have a relapse after age 60. Funny thing is, I wasn't even fully diagnosed until age 64! Life is strange sometimes! Well, a lot my last few years. Well, I wish you and all well and thank you so much for your response.
I was diagnosed April 2017 at age 65. Neuro asked if I wanted to wait 6 months for another mri or be aggressive and start a dmt. I chose to be aggressive and he started me on plegridy. Had another mri in June when symptoms progressed and had 6 new brain lesions. Then another in August with 1 new inactive cervical lesion. Having brain cervical and thoracic Jan 23 to see how plegridy’s doing so we will see. I’ll let you know.
Donnie
I hope you are doing better. I knew that I wanted to stop the ABC’s when my cognitive got worsened. I can’t even remember 5 minutes or less, but I have a good bit of long term memory. My family has said it is not always right as they remember it, but usually I can see it in my mind and I don’t argue because I have found I have made a few mistakes. But these are from my family the also yell at me for having the common problems of MS when they know I have a brain disease. Why is it that people can not understand that the brain controls the entire body. I hear a lot oh I have that too, it is old age. I have quit saying that I had it in my youth. Nobody can really understand it unless they have it.
Betennant . I totally understand. I’m so tired of hearing “if that’s a sign of ms I guess I’ve got it to” that I could scream. My wife is a diabetic who thinks that not talking about it makes things better. She won’t accept the fact that sometimes talking about it helps others understand what you’re going thru and would be more than willing to help you out with a hug or a kind word. Diabetes is like MS in the sense that it’s not going away. So I try not to talk about it because that means I’m obsessed.😜🤪.
I’ll be glad to get this MRIs over with because right now that’s my obsession because I don’t do well spending 2 hours and 45 minutes in closed places. So until Jan 23 that will be my biggest problem.
I think my long time memory is very good until I say something about my younger days ( which is anything before today). Then it’s explained to me that I’m wrong and that’s not what happened or not or what who it happened. But I know I’m right and I’ve decided that’s all that matters.😇😇
I know that over 2000 years ago Jesus died on the cross for my sins and I’m forgiven. THAT I KNOW. That’s something that there is no correcting me about and that’s the only thing that matters. Good luck to you with your family. But you’ve got a new family here that won’t doubt you or get upset if you want to talk about MS. In fact we welcome it.
My prayers are with you
Donnie
Well, Donnie, I just wrote quite a reply to you, hit the wrong thing and it all disappeared. My husband has diabetes and won't talk about it. Hates when I do. He has never discussed my MS much either. I have done all the research and tried to help him. I finally had to pretty much give up, but still working on nutrition, etc. I had an aneurysm (brain), in 2015. 2017, had emergency colostomy, need another surgery this month. I have prayed much to God and sometimes I wonder why he saved me both times? Maybe it's to take care of my husband? I just pray nothing else happens. I do appreciate your prayers, Donnie. I mean that. You are such a kind man. Can't thank you enough! Suzanne
seshultz . Thank you for your kind words. I was taught by one of them very best that being kind to people was one of the best qualities to have so I try hard to honor these things and they dont cost a thing. My father was the most humble kindest person I’ve ever known and he taught my brother and myself to be honest and respectful to everybody because it’s the right thing to do. He was an old fashioned Baptist preacher and absolutely practiced what he preached. On his tombstone is inscribed “A Friend to All”. I can only hope that when my time comes the same can be said about me.
My wife does admit that her with diabetes and me with MS that we will need each other when things progress. She does pretty well managing her sugar levels so far. After 15 or so years she knows what she needs and when she needs her insulin. She’s on byduren and toujeo but so far has managed well. Other than neuropathy pain in her feet she’s doing well. I pray that soon there will be something to deal with MS symptoms on a daily basis and drs who will give them.
My prayers are with you on our journey of uncertainty.
God bless
Donnie
Hi, I'm also in my 60's and was told by my doctor that because i have had stable MRI's for years that if I chose to not take DMD's it would not be a bad idea. My doctor did say he would be closely monitoring my future MRI's .
seshultz
I've read this and was told I could stop DMTs when I was 50 (I did) no new lesions but now SPMS. Whether staying on DMTs would have delayed that...who knows 😐
That was me too, however I went essentially comatose within the next 5 years. Comatose being essentially a walking dead. I could not watch anything on TV, because I could not follow a simple program. I could not do much of anything. I found if I stopped eating, I could delay the falling into a coma every morning, but as soon as I ate ANYTHING, away I went into La La Land. So I stopped eating till dinner. Then I found I could juice fruits and veg's and keep from going comatose, so I did for a few years, religiously, then transitioned to vitamixing for the bulk, and now on clean eating primarily f's & v's with lean meats & fish... I have all the MS "gifts" from the Relapsing remitting days, but have actually been getting better and better. I did get a word of support from my neurologist that I'm not necessarily alone, and how important diet is, and that if we all could only do so,... well he didn't speak the rest, but it was understood. Point is however, don't feel bad for stopping the DMT's. I was quoted years after stopping, that 80% of patients on DMT's eventually can no longer take them. To this day I wonder if they helped or hurt. I know my whole arsenal of MS issues related drugs, including drugs to counter the side effects of drugs, went to nothing. Today, only simple vitamins, and medical cannabis for the pain every night (CBD's, preferably sedating indicas since it is evening when I use it anyway) , and occasionally during the day (using an invigorating Sativa) for fatigue when I can be chauffeured if I need to go anywhere that day. I'm lucky in that my pain (burning feet) is only at night. But, without the cannabis, which works immediately vaping, I'd be up all night exhausted. Was for years. Cause of my walking dead? Most likely. But the abstinence of eating to fight the fatigue??? That was years before being able to use cannabis.
But please, do yourself a favor, and really, really concentrate on nutrition. I'm convinced it is the key to reversing this horrible disease, at any stage of it.
thank you so much for your reply. We do try to watch nutrition around here. My hubby is diabetic, so have my work cut out for me. I know these drugs have so many side effects. I was taken off three due to bad side effects. I'm just staying off and doing the best I can to take care of myself. Unfortunately, other things disrupting things! Had aneurysm (brain) in 2015, hospital for 2 months. 2 Years later, colostomy and emergency surgery. Get to reverse though end of this month. So, I'm really less worried about my MS than this other stuff. I'm just lucky to be here! You take care and I wish the very best for you all!
I was dx in 2015 at age 65 with PPMS. I started Ocrevus 5 mo. ago. When I went to the MS center for a post med. check-up I saw a new Dr. and I was shocked when he suggested I not take the Ocrevus. To be honest, he gave me some reasons why but I was so surprised, they did not register. I opted to get at least one more dose (due Feb. 7) and see what happens. So we shall see... seshultz .
I'm 58, and I was just told by my neurologist that after having gone now 5+ years without a relapse, still have lots of MS "gifts" (GPS bladder, memory issues, fatigue, pain, loss of feeling.....from the relapse years), but he mentioned the same thing to me. That it is not really known science, but that he's heard of that. I had not known prior to my visit.
P.S., I have stopped DMT's (or DMD's) about the same time as I stopped having relapses. I have not had one for a couple years prior to stopping DMT's.
I have no relapses since not taking med since 2015,so I believe I will stick with what I'm doing. Neuro told me if I have a relapse he will just treat that.
Did your Neurologist tell you that? I am in my 60's but I am SPMS. I have a friend that is also in his 60's and he is still having relapses. Usually it is and exacerbation of existing symptoms. Now it is true that once you reach 60 the drugs are not as effective as they are when you are younger.
yes, the head doc at OHSU told me this. But the disability still progresses, which she said they still do not understand. I never did take DMD, as I was 56 when i was diagnosed, and all my MRI s were stable for a year.
Well, like I said, I was diagnosed at age 64! They put me on dmd to keep it from progressing. I'm not taking anything now and will continue that way. My neuro said he would treat me if I had a relapse. Good luck to you and all in this New Year!
seshultz , I am 65 and just met with my neuro a couple of weeks ago. I asked her that very question, and she did a very good job of containing herself and not laughing in my face. She is a MS specialist and said that there is nothing to prove that statement and that, if I were to stop my DMD (Tysabri) I would likely have a relapse within 6 months.
so strange. I have had 2 specialists tell me, the meds don't do much for us in our 60's and relapses are very rare. My specialist this time told me he would treat me if I had a relapse. Hoping I don't! Wishing you the very best!!
thanks for starting this. I'm now 78 and probably starting to get off Copaxone next month. New MD suggested it. Probably high time. But comforting to hear everyone talking about this
I talked to my neurologist who specializes in MS and stated there is no proof that DMT do not work over 60...My MS was mildly progressing a year ago. Went on Aubagio and last MRI two weeks ago showed no new lesions and existing ones were stable. I am 62 and have had MS for 23 years next month. Have been on DMT the whole time. Had relapse year ago that is why I changed DMT to New one. He has over 200 patients and stated most produce a pattern after several years, but still everyone is different. He states if you can afford it stay on DMT👍🙏 Ken
OK. I am 75, diagnosed 3 years ago, but have had many of my symptoms for about 40 years. 2 years ago was put on Tecfidera. My Neuro said that if the Tecfidera cuts down on the number of flares, wouldn't it be worth taking? His approach is to be proactive, not reactive. To my Neuro, age had nothing to do with it. (Another MS Specialist Neuro said that I should stop taking it, that it could do more harm than good. She went to medical school with my Neuro. Both have been practicing 10 years. Interesting! I stuck with my first Neuro!) In my own opinion, what would any particular age have to do with it. There is no cut off point for any disease. I'm for taking anything that might slow disease progression and lessen the number and intensity of flares. There is no test to determine which type of MS we have.
Currently, I am going through a flare, had prednisone, and IV-solumedrol. It did not make the issues in my head go away, so may not want to go that route again. It has taken a couple of weeks to get my legs strong again, and my head still feels pressure in front between the temples. Lots of "cog fog". I will see my Neuro in about 10 days. Had new MRI which indicated some enlarged areas of intensity. Waiting to hear his explanation of these issues. Whatever, it is what it is. Unless he wants to make a change, I'm sticking with this Disease Modifying Therapy.
There is a new report on MSAA about a recent seminar, a discussion of the new ways of treating MS. (I only heard part of it, due to a grandchild coming to visit, but I will listen again to the whole thing.) It was very interesting, discussing the benefits of DMT's and diagnosis criteria, etc. I recommend you all to watch it.
Blessings to you all this New Year!
Oh, thank you so much for your information! So strange how so many neuros think differently about MS. I was diagnosed at age 64, as I said, but had lots of symptoms throughout the years. They just never diagnosed me before that. Had my worst flare at age 64, and yet I'm told it is rare to have one in our 60's. I have been doing good right now. At least with my MS. I so appreciate everyone's opinions, etc. May I ask where and when do you listen to that seminar? Thank you!
Thank you for your reply! Wish you the best of luck and hope you do well on tecfidera! I hope you have a great New Year!
I think that what they mean about relapses (and or remissions) become rarer is because the disease is more active (location, location, location) and “many scars” are affected making you actually feel past relapses on a regular basis basis due to a higher level of progression with time..Relapses are difficult sometimes to tell, if they are really relapses or just worse flares of common symptoms. Stress causes worse flares. Sadly it is when progression is worsening that people are not having remissions but are affected to the point that there is less healing of brain matter to remit. It is now rare for me to feel good and I have take sedatives to sleep, and even that not helping me feel “good” for a year. So, I would consider it a gift of God if I felt no pain or rested and good on any given day. I still consider that my Multiple Sclerosis was a blessing at times and at other times I did not understand why God did not stop the excruciating crushing or tearing pain. Pain is a symptom of something being wrong, even if it is labeled Fibromyalgia, or Chronic Fatigue Syndrome or Myofacial pain syndrome or a triad of them all. I just hope not to go blind but whatever, God will help me somehow. I knew that almost constant migraines versus the occasional bouts of migraines was not good last year. No matter how bad we have it, there is always someone who has had it worse. I was blessed with so many active years when my son was growing up, although there was always kind of sensory pain, until I knew it was more then became Secondary Progressive and degeneration of my spine is not treatable they tell me. I hope patients of the future are more treatable as they are putting more emphasis on MS now as it is increasing in numbers. There is no cure. They are still not sure what causes it. I try not to think about a future no matter what I have learned can happen because I read one doctors article about how he thought one man would surely die soon and another would have a long course and the opposite happened.
Bottom Line: No Cure Yet. Everyone's different. And the drugs and disease progression is different for different people. Everything is evaluated on probabilities, not certainties. Doc's really don't know it all, so they all have a slightly different opinion. Docs change their opinions all the time too, with new/more information on what works and doesn't work for the majority, as reports come in. We're all still learning and trying whatever it takes to get better. So, if something works for you, shout it out, and maybe it may work for others. Maybe not. The drug manufacturers make no promises, that's clear if you ever tried reading their legalese.
For me, the drugs stopped working years ago. I actually felt better off all drugs. Yes, I got worse in other ways from when I was on the DMT's. Nutrition and exercise (walking with a cane) seem to help the best. My relapses (be it new symptoms, or worsening of existing) seem to have stopped with what I am doing, so I will continue what I am doing. Now my time to shout it out: My symptoms aren't all going away, but a few have! And those were relapses that stuck for years and years. Example, like my lost vision from 7 bouts of optic neuritis, which I was told over and over, that was now permanent. Happy! And new ones don't seem to be starting, so I'm happy! Because I can now kill my pain and sleep at night, something I lived with for so many years, I'm really happy! I'll keep eating healthy, and walking my 10K steps a day with my cane, and whoever else will join me.
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