Have You Noticed?

[SalpalSally]

I want to biotch about something today. I don't know about the
rest of you over 60 somethings, but I feel downright abused that,
none of the new miracle drugs are being offered to us.

Like it or not, we are living longer and I demand to live just as well
as anyone else. They even upped the retirement age, so it's not as
though this is a big surprise or something..

Some of us my live for 100 years. I'd like to think that the quality
of our lives does matter. We can still vote at 100, ya know.

[agate]

I collect cases where people with MS die at an advanced age. So far, the record is 97.


Maybe we should be glad or at least relieved that the MS drugs aren't usually prescribed for us older people. There seems to be a good reason for excluding us, and that is that the older you are, the more likely you are to have other health problems.

These would make it difficult to sort out whether a symptom you're having is due to aging or to the new medicine you're taking--or to MS, for that matter.

And since you probably do have some problems related to aging, do you really want to take on the side-effects that most of these drugs seem to involve?

My aging-related problems are very ordinary--wear-and-tear arthritis, bunions, cataracts, hearing loss, dry mouth and eyes--but they add up to nuisances, and I found that taking Avonex and feeling punk for at least one day of the week didn't improve my quality of life.

Not sure just which miracle drugs you have in mind but I have the impression that you can try any of the MS drugs you want regardless of your age, so long as the doctor will go along with it, and I think many of them would.

I was on Avonex between the ages of 61 and 64, and on Copaxone when I was 66 to 69. I could go back on Copaxone or try Tysabri at any time, the neuro said.

[Ikoiko]

There is no age limit on taking MS drugs!

Edited to say: MS drugs

[SalpalSally]

I was talking more about the Trials and you can't get
into a drug trial if you're over 60. And your insurance
won't pay for most drugs, if you are not in the MS
early stages. (RRMS)

When they are testing drugs for SPMS, the allowed
age limit should be higher..IMO

[SuzE-Q]

I've heard that MS slows down or stops being active when we hit the 'golden' years.

Any truth to that?

[agate]

Ikoiko, I've seen a theory that MS can "burn itself out" in older patients but so far as I know it's still a theory. I did find this:

Presented at the AAN conference, April 9-16, 2011:

Quote:

[P06.027] Very Old (> 75 Years Old) Multiple Sclerosis Patients: Epidemiology, Clinical and MRI Characteristics Jean Christophe Ouallet, Jeremy Chateauraynaud, Jim Ananivi, Katy-kim Lataste, Bruno Brochet, Bordeaux, France OBJECTIVE: To add new insights into the growing population of geriatric MS. BACKGROUND: Little is known about very old MS patients. DESIGN/METHODS: A systematic search in Bordeaux university hospital MS center database EDMUS (European Database for Multiple Sclerosis, used since 1993 in the MS center) with the EDMUS 4.1.0 software retrieved patients 75 years old or older. Age, relapses, disability progression (EDSS), MRI characteristics when available, MS modifying therapies and comorbidity were analysed. Accuracy of the data were thereafter checked and completed directly from the patients' clinical files. RESULTS: From 2446 patients recorded in the EDMUS database, 50 (2.04%) were at least 75 years old (range 75-92, mean 80.0 4.7) on December 31 2009. Mean age at the last recorded visit was 72.8+ 5.8. Sex ratio (SR) was 1.5 (30 females; 20 males). Age at onset (AO) of MS was 44.04 years+ 10.92 (AO 41 for Females and 48 for Males). 42 % had secondary progressive (SP) MS (mean AO 42, SR 1.1), 30% had primary progressive (PP) MS (mean AO 48, SR 1) and only 28% had relapsing remitting (RR) MS (mean AO 39, SR 6.5). Only 15 patients (29%) had at least one relapse in the 5 last years of follow-up (mean 0.1 relapse/year). Mean EDSS was 6.41.9 (4.1 for RR, 7 for SP and 7.2 for PP MS) at the last visit. Mean EDSS progression during the last 5 years was only 0.11/year and 0.35/ year in the 5-10 years period preceding the last visit. None of the patients with recent MRI data had gadolinium enhancements. CONCLUSIONS: To our knowledge this is the first systematic description of very old (>75 years) MS patients. MS may switch off in the very old patients with very mild progression and very few relapses.

Sally, I was annoyed too when I saw that all of the trials for MS drugs had an age limit on them--about 55, I think it was. But I think I see why it had to be like that. Older people have other health problems going on all too often, and the trial results would be too confusing.

I wish they had studied the drugs in older people though. Then those of us who opt to use those drugs will have a better idea what to expect from them.

[SuzE-Q]

(not Ikoiko), but thanks Joan! Possibly some good news there although not so good to see average EDSS of that age group. Good to see many still RRMS though. To those in your 60's here and not on DMD's, is your MS still 'active', any progression that you can perceive whether it be rrms or spms?

I agree, they should increase the age of those eligible to participate in clinical trials. Young people are at greater risk than ever before of diabetes, high cholesterol, heart disease, etc, so they can manage to separate out those situations, no reason they can't separate out symptoms of common elder-ailments too. Better to have an idea if there's any difference of efficacy between those older with longer-standing MS and newer dx.

[renee]

Yes Sally, I occasionally look up trials and find I am usually excluded.
By age or level or disability scale number.

I have been so comparatively stable for the last 16 years that I don't think want to mess
with my status quo unless there is a possible cure or improvement.

I don't like feeling excluded, for sure.
And I am deeply offended by a few things that health pros and technicians have said
to me in the last 2 months.
Most memorable was at an interview for services by a heavily degreed PT specialist:
"So what are you going to do WHEN you can't take care of yourself."

Irrelevant to the purpose of our meeting and an unforgivable thing to
say to someone who struggles to maintain nornal.

Somebody in my world needs a hard slap.

[SalpalSally]

Sock it to 'em Renee...

[agate]

And I am deeply offended by a few things that health pros and technicians have said
to me in the last 2 months.
Most memorable was at an interview for services by a heavily degreed PT specialist:
"So what are you going to do WHEN you can't take care of yourself."

Irrelevant to the purpose of our meeting and an unforgivable thing to
say to someone who struggles to maintain nornal.

That kind of remark sends me into attack mode. "If" might be OK but not "when." And if the question has no reason for being in the discussion, I wish people wouldn't ask it.