Should MS treatments stop after age 50?

 

Maybe you’ve heard this: Plenty of multiple sclerosis doctors seem to be halting patients’ disease-modifying treatments at or after age 50. Others point to 60 as the magic age when such prescriptions may cease. The popular theory says the efficacy of such medications commonly diminishes as patients age, while the risks of continuing with the drugs may increase.

 However, recent research also reveals that up to a third of those included in the studies found their MS relapses and related disabilities increased after discontinuing their meds.

 

Holy moley. What’s a middle-aged MSer to do?

 We have to wonder whether this is an efficacy issue (for the medications), an economical one (for insurance companies), an efficiency concern (for medical providers) or perhaps an ethical one (for all of us).

 

We have to be our own advocates.

 Most definitely, each MSer needs to continue to research and learn and question his or her own care and treatment.

 Some of us may be able to stop disease-modifying treatments without suffering for it. After many years of unchanged MRIs (e.g., no new lesions), this may be an option. But this tactic is clearly not for everyone battling multiple sclerosis. Those with the most progressive forms of the disease may be least likely to benefit from such a choice.

 This simply cannot become an across-the-board standard for all MSers, regardless of health challenges, symptoms, and other conditions.

 

It’s not like the medical world can turn us out to pasture, as we age.

 Some 50-somethings (or even 60-somethings, 70-somethings, and beyond) still pursue a wide range of activities and endeavors. We may still have careers in our later years. We juggle multiple responsibilities and chase all sorts of interests.

 

Don’t let them tell you it’s all downhill from here.

 We still have mountains to climb and summits to reach. And if that means we need to continue disease-modifying therapies, then let’s make darn sure those remain available (and insurable) for us.

 

Related items:

·        Ain't nothin' pseudo about a pseudo-exacerbation

·        Beware the MS hiatus hangover

·        Changing meds: Safety tips for tossing leftover drugs

·        Reviewing the four types of multiple sclerosis

 

 Image/s: Adapted from public domain image/s.

 

 

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Got MS? Should you get the COVID-19 vaccine?

 Multiple sclerosis warriors are wrestling with this sticky question, as pharmaceutical giants feverishly roll out their own versions of coronavirus vaccines. For many, this is an answer to prayer. But for MSers, the whole COVID-19 issue may be stealing our sleep.

 

The answer is that there is no easy answer.

I’m not playing click-bait or bait-and-switch here. It’s the reality.

 

MS is different for everyone who has it. And that colors the answer about the vaccine.

Each of us needs to make his or her own inquiries about the vaccine.

At this moment, it seems specific testing has not been done with MS patients and COVID-19 vaccinations. That makes our decision more difficult. It does appear a group of MS experts are examining the possibilities, so we may learn more about this eventually.

Here are the questions I have asked, in my personal search for answers about the accepting a coronavirus vaccine. Frustratingly, there are at least two sides to every answer.

 

What kind of MS do I have?

Life is very different for those with the more progressive forms of MS than it is for those of use currently living with relapse-remitting MS (RRMS). So is the COVID-19 threat.

 

Based on my type of MS, how should I proceed?

Those with progressive types of MS may be categorized as high-risk and boosted ahead in the line to receive COVID-19 vaccinations. The coronavirus can be extra dangerous for those already immunocompromised and physically challenged in various ways by MS. On the other hand, their personal medical conditions (and MS medications) may increase their risk of MS complications arising in response to the vaccine.

Those of us with RRMS tend to have stretches of time (of unpredictable duration) where some or most of our symptoms seem to abate. Of course, the last thing we want to do is awaken the sleeping giant. COVID-19 can do exactly that. Can the vaccine to that too?

 

Am I taking medications that may compromise my immune system?

Many of the disease-modifying therapies commonly prescribed for MS are aimed directly at the immune system. That may forestall some MS flare-ups, but it can also leave a person extra vulnerable to infection. And that includes the coronavirus. For that reason, a physician might direct an MS patient to have the COVID-19 vaccine.

At the same time, lots of experts recommend MSers refrain from this vaccine (and perhaps also flu shots) because those shots are intended to cause the body to produce antibodies. That means rousing the immune system.

The issue is really a double-barreled shotgun for anyone with MS.

 

Which would be worse, catching COVID-19 or reacting to the vaccine?

It’s a crap shoot for sure. The simplest response sounds like a pat answer, but it rings true:

Check with your own MS doctor.

Sorry, that’s the best we can do.

 

Which COVID-19 vaccine will I be offered?

It’s too early to tell, at least around here. Currently, two coronavirus vaccines are in play, with more potentially entering the arena soon. Each may come with its own set of potential side effects and risks. We may or may not have the opportunity to pick which shot we receive, as shipments seem to target various organizations and facilities.

We kind of have to watch and wait … and pay attention.

 

As for me, I am generally leaning towards receiving the COVID-19 vaccine.

I took a flu shot for the first time in a decade last fall. And I had minimal adverse reactions. I did feel a little funky for a couple days, but I have (so far) avoided the flu. My hopes are high that I will respond similarly to the COVID-19 vaccine.

 

My opinion about the COVID-19 vaccine may change before I am eligible for it.

We are likely to learn a lot more in the coming months, so I’ll be reevaluating my position on an ongoing basis. My personal characteristics place me pretty far down the list in vaccine priority.

I refuse to pass judgment on anyone who does or does not choose to have the coronavirus vaccine, although I do look forward to the day when the pandemic lifts.

 

On the up-side, we MSers are pretty good about enduring injections.

We definitely take this in stride. I cannot tell you how many people I have heard complaining about having to get a COVID-19 vaccine, simply because they dread shots.

Heck, we could do it ourselves!

 

Related items:

• Reviewing the four types of multiple sclerosis
• Are flu shots safe for people with multiple sclerosis?
• MS is like the cancellation disease.
• MS symptoms fire when we’re sick.

 

Image/s: Adapted from public domain image.

 

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Feet? Feet? Where are my feet?

Living with relapse-remitting multiple sclerosis means walking a strange path. Often, we may seem to cover miles with reasonable ease, taking the MS life in stride. But at other times, usually without warning, the most curious neurological symptoms can bring us to our knees.

Daily, we walk a veritable tightrope between normalcy and numbness, movement and misery, spryness and spasticity, energy and exhaustion, vigor and vertigo, wherewithal and weariness, power and pain.

If you are an MSer (or if you know and love one), then you might understand.

For most of my life, I have jumped into all sorts of experiences with both feet.

Maybe that’s just how I’m wired. And I kind of think it’s hereditary, because I come from a family of ready-set-goers. I’m not one to drag my feet, except when MS foot-drop kicks in. Or when the MS MonSter somehow steps on my toes and makes them go numb.

Then it’s as if my feet have somehow slipped away.

Sure, I know they are there. I can see them. I can touch them. But I cannot feel them. Or they actually hurt. Or they don’t obey what I ask them to do.

MS is a crazy thing. Our own bodies betray us in the weirdest ways sometimes. And that’s no walk in the park.

It’s OK. I hope to be back on my feet again tomorrow.

Image/s:

Adapted by Kicking MS to the Curb

from public domain artwork

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Reviewing the four types of multiple sclerosis

MS is MS, right? Well, not exactly. In fact, neurologists specializing in multiple sclerosis currently identify four different types of MS.

Diagnosed individuals generally fall into one of the four categories, although the chronic neurological condition can change. That means an MSer may be living with one type of MS, but eventually shift to another form.

What are the four types of multiple sclerosis?

The National MS Society outlines the four forms of MS as:

1. Relapse-remitting MS (RRMS)
2. Secondary-progressive MS (SPMS)
3. Primary-progressive MS (PPMS)
4. Progressive-relapsing MS (PRMS)

How are these four multiple sclerosis types defined?

Here are the current descriptions of each form of MS.

1. Relapse-remitting MS (RRMS) – This MS type is marked by distinct attacks, exacerbations, flare-ups, or relapses. Such instances occur periodically (and basically unpredictably), but tend to be followed by partial or total recovery times (remissions), with little or no disease progression. Close to 85 percent of all MSers are initially diagnosed with RRMS.
2. Secondary-progressive MS (SPMS) – This form of MS may follow RRMS in some individuals. Like RRMS, this MS type includes identifiable relapses. But SPMS usually brings partial recoveries, with symptoms often remaining, or even worsening and leading to more steady disease progression.
3. Primary-progressive MS (PPMS) – PPMS usually brings more constantly decreasing neurological function in affected individuals. The disease progression may be steady or sporadic. The changes may occur slowly, but remission is rare. Symptoms that arise tend to remain. PPMS may affect approximately 10 percent of MSers.
4. Progressive-relapsing MS (PRMS) – This rarer MS form is known for steadily progressing neurological symptoms and occasional flare-ups as well. With PRMS, the disease appears to progress without times of remission, although some symptomatic relief may be seen after exacerbations subside.

What are the symptoms generally seen with MS?

To review, the most commonly symptoms of multiple sclerosis include:

• blurred or double vision
• bowel function issues
• chest tightness (MS hug)
• clumsiness
• cognitive problems
• electric shock sensations
• facial pain
• fatigue
• headaches
• heat sensitivity
• loss of balance
• memory issues
• muscle spasms or stiffness
• nerve pain
• numbness
• paralysis
• speech issues
• swallowing difficulties
• tingling
• tremors
• urinary incontinence
• vertigo and dizziness
• vision loss
• walking and gait problems
• weakness
• and more.

 

Specialists estimate 60 to 70 percent of those with RRMS eventually manifest progressive symptoms of MS.

Medical experts continue to research, develop, and test potential treatments for all forms of multiple sclerosis.

Image/s:

Created by this user

With information provided by the

National MS Soicety

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