progression at an older age

[bbelaine]

Hello all,

I have a question and I'm wondering if anyone knows the answer. Has there been any studies done on how MS progresses when diagnosis was done at an older age? I was diagnosed at 55, almost 60 now and apart from tingling, feel pretty good. I had some problems with Tecfidera and had to come off it, did Copaxone for a few months then decided to try no DMDs. I'm happy with the way I'm feeling right now (the Tec gave me sore muscles for over two years then I was sick with pneumonia twice-low WBC was thought to be the reason). I know it's a bit of a gamble but I'm not sure if the meds are worth it. One suggestion was to get another MRI to see if that has changed without me noticing any physical symptoms-seems reasonable. MD doesn't like no meds, hubby doesn't like it either, but I'm happy with the way I feel right now. Curious to see what others might think.

[Thinkimjob]

Honestly, I don't know. I've had this since I was 26; 45 now. Truly can't imagine how I'll be in ten years.

Can barely walk and have the rest of the nasty stuff. Yes, bladder, my wheelie walker and I need a little more notice of your intentions.

Taken the drugs and like your unpleasant experience with Tec, kinda think Beta ruined five good years of my life, but it might have kept me walking freely for a few extra years.

I don't know. When I was diagnosed, Copaxone was the bright and shiny new drug on the block. Choice was A, B or C.

I chose B, only because it was injecting three times a week, not seven, and under the skin, not into a muscle.
I was terrified at the time.

It was a choice based on fear, not reason.

Now there's a list of drugs as long as your arm, and I still don't know.

Is a 50 or 70% reduction in flares worth the additional awfulness of the new drugs?
Maybe.

I want something that will stop progression. I'd cut my arm off with a nail file for a guarantee of no more progression.

Do I want to take something that makes me feel awful and risk death/ even more disability for another year or three?

I can tell you the reality of progression is worse than I imagined. It is BAD.

Good luck with your decision, whatever you decide.

[jreagan70]

Has there been any studies done on how MS progresses when diagnosis was done at an older age?

I'm sure that you're referring to MS onsetting at an older age rather than being diagnosed at an older age, because those are different.

There have been a few studies of people who developed MS at an older age, and the consensus is that there is faster progression in people who develop MS later in life. At least a couple of those studies found that the faster progression isn't due to MS being any different in older people, but instead that, as part of the normal aging process, people just don't heal as well as we get older.

Certainly someone who breaks a bone or has major surgery at age 60 isn't going to heal as quickly or efficiently as someone who is 25. The normal slowing of body processes with age is one (and only one) factor in the theories of why RRMS turns into SPMS -- the body just can't heal fast enough or efficiently enough anymore from myelin attacks to prevent the underlying nerve axons from degenerating.

It seems to be pretty well accepted that older bodies don't heal as quickly or efficiently as younger bodies. But, for some reason, a lot of people with MS seem to forget that. There's no shortage of people with MS in their 50s 60s and even 70s in forums and message boards and chat rooms who are blaming all of their aches and pains and slowing metabolisms and motivations solely on MS, as if they believe that, if it weren't for MS, they'd be bouncing around as if they were still 25. And that's just not the way the human body works. Older people are going to have all of the normal changes that go along with aging, no matter what health conditions they have going on.

So the study findings are certainly reasonable. Progression of late-onset MS is generally faster because, in part, older bodies just don't heal as quickly or efficiently from MS attacks and inflammation as younger bodies do.

That has to be compared to people who develop MS at a younger age. They heal more quickly and efficiently while younger, so the progression during that phase of life is slower. But progression still speeds up as they get older, so when age matched, by the time they get to be 50, 60 and 70, the rate of progression might not be that much different than for folks who don't develop MS until that age. I haven't yet read any studies that compare progression based on age of onset in that way, so I don't know what the general findings are for that kind of comparison.

I know it's a bit of a gamble but I'm not sure if the meds are worth it.

Maybe one of the things that might be a little different for people who develop MS later in life is that older folks may not have the same motivations to be on a DMD as younger folks do. A 60-year-old who has raised a family already may not not feel the need to "stay healthy for the family" as someone who is 30 and has small children might.

And a person who is 60 has put up with more wear and tear of life than a person who is 30 and may be less willing to put up with feeling bad from medications as a trade-off for some future benefit. As time goes on and I have more life behind me than I do ahead of me, I definitely feel that way.

There have been many studies done on the effectiveness of DMDs in slowing MS progression. These are not age-related studies, but the comparisons of outcomes over time of people with MS who started treatment early vs. those who didn't. Now, there will always be outliers who don't fit into the statistical bell curves, but generally, the earlier treatment was started, the better the outcome. So the general consensus is that early treatment is better than late treatment, and late treatment is better than no treatment.

Study outcomes can make very good guidelines for making choices about treatments and lifestyles, but in the end, every person has to do what they feel is right for them. So whatever choice you make about taking a DMD is a good choice as long as you're prepared to live with the consequences.

[ru4cats]

Wow, jreagan70, you nailed it! I couldn't have said it better myself.

I was diagnosed at 58 1/2, I'm now 64, and I'm on Tysabri. For me, I've decided to stay on Ty since I'm doing so well on it, and I'm not willing to risk possible damage. I'm gambling that in another 10 years research might show that staying on Ty was the best decision.

However, if I was not dealing with a DMD well, I could see myself opting out. Neurologists seem to feel that older MS patients don't have as much inflammation, hence fewer, if any, relapses. I know I haven't had a relapse since before diagnosis.

The Rocky Mountain MS Center in Colorado has just begun a study of DMD's in older MS patients to see if no DMD's is a reasonable choice or if it raises the risk. Here is the link to the webinar; it is well worth watching and might answer some of your questions.

https://www.youtube.com/watch?list=U...&v=Mzvyut29dsg

If you choose no DMD's, I could recommend at least one MRI a year to keep watch on any further changes. So much damage occurs "below the water" that you want to keep track. I do know you need to feel comfortable in whatever decision you make. Good luck.

[Seasha]

The Rocky Mountain MS Center in Colorado has just begun a study of DMD's in older MS patients to see if no DMD's is a reasonable choice or if it raises the risk. Here is the link to the webinar; it is well worth watching and might answer some of your questions.

https://www.youtube.com/watch?list=U...&v=Mzvyut29dsg

ru4cats~ This video is almost one hour long, so I didn't view the entire webinar. I looked at the highlights of the talk (on the right hand side) for information on the study of DMD's in older patients and couldn't find the segment. Is this the correct url you wanted to post or am I missing something? I'm interested as I am an older person and on no DMT.

Thanks!

[bbelaine]

Thanks everybody for their input. I'll explain my situation in a little more depth here. I was diagnosed in 2011, but, like many others on here, I think there were things going on before that I just sort of ignored-the tingly feet thing was there around 1990, I just sort of got used to it.

There was a diagnosis of Bell's Palsy about 30 years ago, but that cleared up pretty well, just a slightly crooked smile. My symptoms are pretty much just tingly lower limbs, and I know that's definitely a blessing compared to so many others in these forums.

So when the drug companies say that there are 30% fewer relapses for people using the medications, I understand the significance of that statement for people severely afflicted, but it doesn't seem to be meaningful for me. I've had the tingling now for almost 30 years, and if that's how it's going to be I can definitely live with it. I'm taking no drugs right now and I'm definitely happier-no thinking, "Okay, it's shot day today" or "My legs and arms sore and really sore and do I really want to slide myself over to the edge of the bed and get up to get my glasses?"

It was a good day when I could sit down on the loo without holding on to something to lower myself because my muscles were so sore, then thinking "Okay, time to get up now." When I came off the Tec to do a cleanout before starting on Copaxone, the sore muscles just went away. Now, I don't even think about getting up or down-I feel like a normal person. Don't think about MS much now, other than wondering if I'm making the right choice with no drugs.

If I start to notice things changing, or maybe an MRI shows more lesions, I'll probably go back to some sort of treatment, and I'll definitely watch the broadcast that some of you have mentioned. Thank you all so much for your input.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Jules A]

There's no shortage of people with MS in their 50s 60s and even 70s in forums and message boards and chat rooms who are blaming all of their aches and pains and slowing metabolisms and motivations solely on MS, as if they believe that, if it weren't for MS, they'd be bouncing around as if they were still 25.

Lol, so true!

Maybe one of the things that might be a little different for people who develop MS later in life is that older folks may not have the same motivations to be on a DMD as younger folks do. A 60-year-old who has raised a family already may not not feel the need to "stay healthy for the family" as someone who is 30 and has small children might.

And a person who is 60 has put up with more wear and tear of life than a person who is 30 and may be less willing to put up with feeling bad from medications as a trade-off for some future benefit. As time goes on and I have more life behind me than I do ahead of me, I definitely feel that way.

I feel this way and have no intention of living well into my 80s so at 65 or 70 my threshold will be lower with regard to what I'm willing to tolerate treatment wise. I have a fairly minimalistic advanced directive, pain meds and nothing else.

The truth is although I know everyone can site at least one 90 year old who is still independent and mowing their 2 acre lawn with a push mower but I think those examples are few and far between. In my experience the difference even between 75yo and 80yo can be huge. I'm trying very hard to accept the natural aging process and embrace my own mortality. Quality over quantity is my motto.

[bbelaine]

I listened to the presentation mentioned above and around 14-15 minutes, it starts to discuss if there are benefits to using DMDs at older ages. It made me think that what I want to do (no DMDs) is reasonable and not completely off-the-wall. Thanks ru4cats for bringing it to my attention. My husband it going to watch it later too-he has more reluctance about me giving them up but will support me with whatever way I go.

[ru4cats]

Seasha,

It begins at 14:49 in the video. The slide says "Aging". It talks about brain volume loss being faster with no DMD's, and then goes on to talk about the study. The right side contains all the videos available from the MS Center, not the highlights from the talk.
Hope this helps.

Kris

[Seasha]

Thanks Kris - got it!!

[Tawanda]

I think you have to consider that by the time you feel worse and/or see new white blobs on your next MRI, you won't be able to go back in time and take a DMT. Of course, stuff happens without a DMT, too, but you will never know for sure. It could be like shutting the barn door after the horse already got out. I dunno. I struggle with this same issue.

[Tawanda]

It seems to be pretty well accepted that older bodies don't heal as quickly or efficiently as younger bodies. But, for some reason, a lot of people with MS seem to forget that. There's no shortage of people with MS in their 50s 60s and even 70s in forums and message boards and chat rooms who are blaming all of their aches and pains and slowing metabolisms and motivations solely on MS, as if they believe that, if it weren't for MS, they'd be bouncing around as if they were still 25. And that's just not the way the human body works. Older people are going to have all of the normal changes that go along with aging, no matter what health conditions they have going on.

There's also a flip-side to this. I feel like people without M.S. aren't allowed to age! I see the same relatives around the holidays once a year and feel them scrutinizing me to see how bad my M.S. has progressed. Of course I am a year older and I look a year older, but I doubt they are factoring that part in judging by the pitiful looks I get. In case they didn't realize it, they aged a year, too, and I don't scrutinize them!! Hey, nobody I know is getting any younger!

[Mable]

In one of his webinars, Vollmer says that MS may burn out in older people. But what I've heard him and others say is that the trick is to figure out who it burns out for...before recommending everybody over a certain age go off DMTs. Some older people do relapse.

I'm 54 and have been without any disease activity since I was first diagnosed and started Copaxone 4 years ago (knock on wood). For me, I don't want to know where my next relapse might be, so I keep taking it. I would be very very careful about quitting all together.

[Wonderdog lady]

Don't know what anybody else thinks but "more brain volume loss without DMDs" is enough information to convince me to continue taking DMDs! Diagnosed 2007 at age 56. no confirmed relapses, new lesions or inflammation. I just don't need any more black holes than I have already

[palmtree]

I will just throw my 2 cents in. I was diagnosed at 57. The way I look at it is I had a really good life until then. And then it was over. I was in the hospital for 5 days and everyone came with flowers and cards as if they were expecting me to die. If I had died then, everything would be right.

When I got out of the hospital I was determined to get back to my life. I started Tysabri and it was supposed to prevent any more relapses I figured I had it made. I was still very physically fit, my brain was working and I could walk. But my life had changed. The doctors appointments started. When I used to get up, clean the house, make a meal, do my exercises and head for the pool.

Suddenly I was going to a doctors appointment at 2:30 in the afternoon. I would come home so tired I had to head straight for bed. I still wonder if I hadn't had so many appointments I could have kept up with my swimming much longer.

I can understand why you don't want to have sore legs and arms all the time. But you still have the option of Tysabri. And coming soon is ocrelizumab which is less arduous and safer. If you decide to go without a DMT, do it for the right reason.