Author Topic: (Abst.) Patient-reported outcomes among DMT continuers and discontinuers in MS patients over 60  (Read 35 times)

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Offline agate

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From PubMed, March 10, 2019--"Changes in patient-reported outcomes between continuers and discontinuers of disease-modifying therapy in patients with multiple sclerosis over 60":


https://www.ncbi.nlm.nih.gov/pubmed/30851638
MS Speaks--online for 13 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

Offline ewizabeth

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I saw my neuro last week and he asked if I wanted to go on treatment again. I told him I could take Copaxone in the 3x weekly dose if I were to take something. He said we could wait until summer, and I've had MRIs and talk about it then. I'm almost 61 years old. He must be wondering about the quality of life vs. treatment. I don't really get relapses anymore, just a bit of gradual intensity of old symptoms, probably due to aging and also my bad back.

Offline agate

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I'm sometimes tempted to go back on Copaxone too--and I'd opt for the 3x weekly dose.  So far I've backed away from the idea though. It looks as if these drugs aren't nearly as effective--or may not be effective at all--if you're older or have had MS without relapses for quite a while. But some people take the drugs because they do feel that they're helping.


The older I get, the more reluctant I am to start any medicine. I'm also taking a pass on suggested surgeries. And MRIs. The neuro would like to do 3 MRIs on me but luckily she's not really pushing the idea. If I had really difficult or intractable pain or very severe mobility limitations, I'd reconsider.


I've lost some mobility in my right thumb and in my hands in general, and I can't even lift my grandchild now that he's 20 lbs. But these are limitations I can live with. Also, my back goes out quite often when I stand or bend, but the pain goes away if I sit for a while and take it easy and watch how I do the bending and reaching.  These are all the kinds of things I've heard older people talk about for years, and they get along with those limitations.


Hearing is a big problem but I do have hearing aids, and they help. They go on the fritz at times and the repairs can be costly. But I wouldn't be without them.  This too is an aging issue, I'm pretty sure, though I had hearing problems since my late 30s that seem to have been MS-related.


I'm very happy I've been spared the UTIs and sinus infections and falls that were all too common in my years with MS. I haven't fallen in a couple of years now (knock on wood). Maybe the 5,000 IU of vitamin D3 that I take every day is helping? Or maybe it's just another straw I'm clinging to....
MS Speaks--online for 13 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

Offline ewizabeth

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I bet your grandchild brings you joy! I don't have any yet and our sons are going to be 37 and 39 this summer. Neither is married or in a relationship that I know of. I can't lift my ten pound cat without hurting my back anymore.


Maybe you should get the MRIs done just to help you decide if you should start Copaxone again? I was taking the 3x a week version for a few years and it was much easier than the daily version.


I seem to have inherited my dad's good hearing, as I don't have any problems with that so far. My husband has hearing aids that he only wears for phone calls or when we go to church.


Sometimes I wish I could get a power wheelchair and a van for longer outings because I get so exhausted.


I only had the urinary problems in the early years of my MS diagnosis, thank goodness. But I do have a lot of GI issues that might be related to the MS.


When I think about my health issues it also reminds me of when I was young and I heard older people complaining about aches and pains and failing health.  :)

Offline agate

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No need to give up on the grandchild idea! My son and DIL are in their mid-40s.


Yes to the GI issues. Even a little stress and I lose my appetite and spend much of the day in the bathroom. I'm not sure if it's age or MS, or both.


I'd go ahead with the MRIs except that last time this place did an MRI, it was for the specific purpose of comparing it with a previous MRI from a couple of years before. They did the MRI but during the followup visit, it came to light that they'd never bothered to do that comparison--and the comparison was never made. In other words, a totally useless MRI was done so far as I can figure out.


I'm stuck with this neuro practice  because of some insurance limitations. It seems to be because my PCP is in a hospital healthcare system and any specialist she refers me to has to be in the same system, and that practice is the only one in it. Confusing? Yes indeed.
MS Speaks--online for 13 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

Offline ewizabeth

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Oh the confusing medical professionals. It seems like the big picture is so clear to us, and they can't even remember our name without looking at the chart sometimes. My neuro's office messed up my short term disability application that likely resulted in me losing at least $100,000 of benefits from my company, and SSDI over my lifetime. I would have been smart to consult a lawyer early on, but that's on me I guess.


I'm sort of stuck with them because it's hard for us to travel out of town for appointments anymore. It would be nice to live closer to the city where the better doctors are. But now that I'll be on medicare I don't know how that would work anyway?

Offline agate

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That's perfectly terrible! I hope it's not too late to get some legal help with this.


I don't think Medicare is concerned with how far you're traveling for medical care but I could be wrong. 


There are two MS centers in Portland, where the "big name" neuros are. One doesn't accept Medicare/Medicaid patients, and the other (the last time I checked) wasn't accepting new patients. Both are pretty far away from me but at least not in another town. I have travelled to other towns (suburbs) for medical care many times and Medicare hasn't  questioned it, but the whole system is so involved that what's true for one person isn't true for anyone else, or at least that's how it looks to me.


I don't much mind missing out on  big-name neuros. My impression is that the more renowned a specialist is, the busier he/she is--and the more likely the patient is to have to wait months for an appointment and to be treated in a desultory way during that appointment. But I've heard of many big name neuros (ones often mentioned in connection with knowledge and research) who take time with each patient and really do listen and take your individual needs and preferences into consideration.
MS Speaks--online for 13 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

 

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