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.

 

 

Feel free to follow on Twitter. Please visit my Amazon author page as well.

You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

Did COVID-19 flip you into an MS flare-up?

 Had COVID-19 yet? Did it lead to an exacerbation (relapse or flare-up) of multiple sclerosis?

You’re not alone in that. Tons of MS warriors can share similar stories of symptoms arising, reappearing, or intensifying after they battled the pandemic virus.

 

It’s the nature of the MS beast.

 The Cleveland Clinic lists MS as an autoimmune disease. That puts MS in a group with such conditions as these (listed on Web MD):

• Chronic inflammatory demyelinating polyneuropathy
• Graves disease
• Guillain-Barre syndrome
• Hashimoto’s thyroiditis
• Inflammatory bowel disease (IBD)
• Multiple sclerosis (MS)
• Myasthenia gravis
• Psoriasis
• Rheumatoid arthritis  
• Systemic lupus erythematosus (lupus)
• Type 1 diabetes mellitus
• Vasculitis

 Other lists also include Addison disease, celiac disease, chronic fatigue syndrome, and more. The Autoimmune Association cites more than 100 autoimmune diseases, while pointing out that it’s not uncommon for individuals to battle clusters of these.

 

Holy moley.

 The National MS Society calls multiple sclerosis “immune-mediated.” That’s how autoimmune diseases generally work their wickedness.

 In short, when the body’s immune system goes into action, it begins fighting infection. But in a person with an autoimmune disease, the immune system doesn’t seem to know when to stop. Essentially, it begins attacking healthy cells, tissues, or body structures. For the MSer, this means the immune system goes after myelin, the protective covering on nerve fibers.

 

And that can cause all kinds of havoc.

 Personally, I had a very mild case of COVID. I’m pretty sure it was the Omicron variant, breaking through the vaccinations I had received. I coughed pretty hard (like a cold’s chest cough) for one night. I had extra hearty headaches for a couple of days. Then it was over.

 

Except it wasn’t.

That’s when MS sent me whirling with its nasty old vertigo for a couple of days, coupled with fairly significant fatigue. My vision blurred in the same eye that first pointed doctors to identify MS via optic neuritis more than a decade ago.

 Ugh.  It was an MS flare-up. Doctors tend to tag such episodes, if they arise at least a month after the last time and persist for at least 24 hours.

 

And then, the whole ordeal truly was over.

 I’m grateful that this whole episode was uncharacteristically brief and that it is in my rear-view mirror. We’ve all heard of so many cases that did not go this way.

 If you have MS and have already come through COVID, how did it go for you?

 Because battle the MS MonSter and illness at the same time is no picnic.

 

Related items:

• Ain’t nothin’ pseudo about a pseudo-exacerbation.
• MS is like a carnival thrill ride without the thrill.
• MS is like the cancellation disease.
• MS symptoms fire when we’re sick.
• Optic neuritis: A look at sudden blindness

 Image/s: Public domain image.

 

Feel free to follow on Twitter. Please visit my Amazon author page as well.

You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

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.

 

Feel free to follow on Twitter. Please visit my Amazon author page as well.

You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

MS makes me clumsy sometimes.

Some days I wake up and want to be a dragon-slayer. I climb out of bed with great ambitions, hoping to tackle a long list of tasks. I want to work out and run a bunch of miles. I’d love to fill my calendar with all sorts of stimulating and enjoyable activities, especially with people I’ve been wanting to see for a while.

Basically, I aim to put multiple sclerosis on the back burner – as if that were actually possible. Sometimes we can sort of do that for a while, if we’re between exacerbations.

I should have known better today.

This past weekend, I ran a half marathon. Yes, that’s 13.1 miles. And I pushed the pace a bit. So I might have expected to feel pretty spent (and out of so-called “spoons”) for a couple of days.

That’s the staccato rhythm of MS, as I live it:  Feeling good, feeling crummy, feeling good, and so on.

I lounged around yesterday, for the most part. I finished some sedentary projects, but didn’t exert myself much physically. That was a given for the day after a big race.

Today I was raring to go.

I hit the gym for a midday break and cranked out a 5K on the elliptical machine, followed by two miles of track running and weight circuits. Midway through those, I bumped into one of the weight machines, with the metal handle smacking me squarely in the middle of my back.

“Ouch!” It’s not like I don’t already have MS demyelination in that neighborhood. And it’ll definitely leave a mark.

I yelped and grimaced and gasped. Then I kept going with my workout routine.

Eventually, I climbed into my car and reached for my seat belt.

“Yow!” I bent an entire fingernail back, catching it between the car seat and the center console.

Not exactly nimble.

It is certainly shaping up to be an MS-clumsy day. I probably should have seen this coming, as soon as my toes went numb during the first mile on the elliptical.

I almost want to wrap myself up (head to toe) in bubble wrap till this bout passes. And I am evaluating all of today’s remaining calendar commitments to determine which are worth the risks my current clumsiness can bring.

Image/s:

Adapted by this user from public domain photo

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.

You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.