Getting Older, Hitting a Plateau

[JaneK1975]

Hello all. I was diagnosed 12/27/2011, and have been on Copaxone since 02/02/2012. Things are great for me lately. I have some nagging remaining symptoms from my last relapse (the one that resulted in my diagnosis), but nothing that stops me from remaining very busy at work and school. My last MRI (performed 8 days ago) showed no new lesions when compared to the one performed 6 months previously, and I am very happy.

During my neuro appointment last week, in which we reviewed my latest MRI results, one of the topics my neuro brought up was "How long will I need to take Copaxone?" I wouldn't have asked this question, because I figure I'll take it until I have a reason to stop, but I guess he wanted to broach the subject early. He told me that some people with RRMS find that when they get older, the disease becomes "inactive", and they are able to go off the meds without any consequences. This was news to me, so I wanted to see if any others here had heard of this or know anyone who has had this experience. I did some Googling and found very little on the subject, other than this page: http://www.everydayhealth.com/multiple-sclerosis/specialists/getting-older-hitting-a-plateau.aspx

I'm not trying to start a debate here about whether this is possible, I just want to know if others have heard this from their docs or have seen this happen. I think it is most likely that this is a somewhat rare possibility and my doc was trying to make me feel good about my future (He is a very kindly old man- it's just his way). He followed that comment with an explanation that he is a general neuro who sees all types of neurological patients, not an MS specialist, and if things ever get bad for me, he will recommend me to a specialist.

Best,
Jane

[fern36]

I had my first MS symptoms way back in 1985 and was diagnosed in 1990. So I've had MS (RRMS) for 24 years. I have also been wondering about this since I've been on Copaxone for a very long time, since 2000. I am doing very well, (no issues for about 8 years)  but I'm not sure if it's the medication or something else, like my very healthy diet.

On the one hand, I have read as you may have that pregnant women tend not to have MS issues during the pregnancy, possibly due to elevated hormonal levels. So I wonder if the oppose might be true after menopause, when hormone levels drop.

[SarahL2491]

Well, the "aged" one here, was diagnosed at 69 and my neuro was insisting that we start a DMD as soon as possible to try and avoid future episodes.  I was given the impression it was forever.

I have never heard that either.  

[scorpio19th]

I was diagnosed in 2000.  My neuro did not suggest there would be any plateau that would "allow" my stopping therapy.  So I assumed I would take copaxone for the rest of my life.  As MSers know, therapy costs an arm and a leg.  When friends ask if the drug is working, I'm reminded that I haven't gotten much worse in 12 years, except for fatigue.  But I don't know whether that's because of the drug, or because I'm just "lucky".  So I expect to stop treatment at some point simply because I can't afford the drug.

[kwarendorf]

I'm old, as far as these studies are concerned. I was 51 when I was diagnosed and my initial DX was SPMS. I had my first relapse at 30 and the next at 48/9.

I have been fortunate. My MS has been rather considerate, in terms of how it has impacted my life. It seems nearly impossible to know whether my current, highly functional state is due to natural remission, Tysabri, SPSM's characteristic lack of relapses or the leveling off Jane's doc talked about.

I'm not sure I care :-) Until this thread, I had always though that, absent a cure, my DMD use was for life.

Kyle

[supermum_ms]

Hmmmmm I've not heard of 'age' being connected to conversion either, length of time with MS but not their actual age. The only thing i can work out is that in a lot of research studies, they commonly list the average age of participants and when their category of MS are mentioned, SPMS is often in the oldest age group eg CIS 39.4yrs RRMS 38.4yrs, SPMS 47.5yrs

http://www.utasip.com/cpms/jrnl_set2/cs_set3.cfm

Though i've never heard or read anything about MS becoming 'inactive' when you get older, its basically expected for most people to eventually convert from RRMS to SPMS but having less relapses doesn't mean its inactive, more the reverse i'd think. I have no idea where this idea is coming from.

I'd be interested in what comes of this :o)

Cheers.........JJ

[JaneK1975]

Oh, I would love to hear your neuro's take on the subject if you remember to share after you see him :)

[JaneK1975]

I think you are totally thinking about it correctly, DB. Today, I  agree with you as far as staying on a DMD regardless of progression or number of relapses. If I needed to convince my neuro, I don't think I'd have any problem doing so (or I'd switch neuros if I had to). On the other hand, I can envision the possibility that I might feel different after 15 or 20 years of taking Copaxone. You make a great point, that even if the disease remains relapsing throughout old age, what is a minor relapse for a 30-something could be way harder to handle for an older person. Ah, the decisions we get to look forward to!

[doublevision1]

That "i" in front of "regardless" is a typo!  drives me nuts when people say "irregardless" and other made up words!  :)

[doublevision1]

Not sure if I'm thinking about this correctly, but I would think that it makes more sense to stay on a DMD indefinitely while still RRMS, iregardless of likelihood of progression, order to continue to stave off relapses of acute inflammation, or at least, reduce their severity when they occur.  Even if one reaches an age where likelihoof of progression has decreased, and even if relapses naturally decrease as one ages, if the dx is still RRMS, there's always the chance that the next relapse will be the one that does the most severe and lasting damage.  So decreasing the number of relapses would decrease the chance of this occurring, irrespective of the matter of progression.  Don't know if this makes any sense to anyone else.

I start seeing a new neuro next month.  His research is mainly in the area of MS progression.  I'll get his take on the question of age and likelihood.of progression to SPMS.

[JaneK1975]

Here's the abstract for the research article that Dr. Stachowiak didn't bother to cite in her blog:  http://msj.sagepub.com/content/19/2/188.abstract

It's an interesting way to think about things. According to the study's findings, if a person gets to 45 without converting from RRMS to SPMS, the chance that they ever will convert drops to less than 50%. Also, "Onset of progression is more dependent on age than the presence or duration of a pre-progression symptomatic disease course." That last part makes a lot of sense to me since I've never understood how doctors think they can reliably determine when symptoms began for an individual...

This feels a bit like a double-edged sword for anyone in their 30's. If you're going to convert (which is technically the more likely case), it's probably going to happen pretty soon.  On the other hand, the older you get without having converted, the more likely the chance that you won't ever convert.

- Jane

[JaneK1975]

There doesn't appear to be any research on this, as with so much of our MS questions - just anecdotal evidence...

This has me wondering now: If approximately 80% of RRMS'ers convert to SPMS withing 20 years or so, what about the other 20%? Does everyone convert, given enough time? Or is it possible that some who don't convert find themselves having fewer relapses with age rather than more? Is it possible for relapses to someday begin to reduce in frequency rather than increase? I'm being curious...

I just found this: http://blog.nationalmssociety.org/2012/10/will-we-all-develop-progressive-ms.html

Hmmm,
Jane

[doublevision1]

Never heard this.  As far as I know, there's no reliable way to predict who will have what kind of disease course.  Until there is, I wouldn't take that gamble and I don't think my neuro would want me to.

Whenever a doc tells me something that seems out of left field, I always ask her/him to point me to the research.  Not in a suspicious way, but in a Wow, Really?  I'd like to learn more about that! way.

[essdipity]

No, I have never heard that MS lets up with age. That's contrary to the experience of many, but I'll be interested in reading the replies.

ess