A Tough Year to Fight the #Flu

My son and his wife and one of my grandkids have been fighting the flu.

This is not a year to get the flu.

The type of flu circulating in most of North America right now is the H3N2 variety. And, in the words of Helen Branswell in a STAT article she’s written, H3N2 is “the problem child of seasonal flu.”

H3N2 kills more people than any of the other flu varieties. It’s also the toughest strain to protect against. Research shows the flu vaccine, which inoculates against several varieties, is only about 33 percent effective against H3N2. The component in the same vaccine that fights H1N1 flu, on the other hand, is about twice as effective. Influenza expert Dr. Ed Belongia, quoted in Branswell’s article, puts it this way:

“The biggest challenge or frustration is that H3 … for whatever reason, is the virus that we see causing the most severe illness in large numbers of people. And it’s also the virus for which our vaccine is least effective. And so that’s a double whammy that so far we have not been able to adequately deal with.”

The statistics this season bear this out. The Centers for Disease Control (CDC) reports “widespread” flu activity in 49 states. Only Hawaii has escaped so far. As of the final week of 2017, flu claimed at least 211 lives in the U.S. In Australia, where flu season precedes North America by about six months, health officials reported a record number of flu cases.

Flu shots for MS patients?

Last fall, when the North American flu season was just gearing up, I posed this question to my readers: “Flu Shot or No Flu Shot for MS patients?” The response I received on some social media platforms surprised me. Though the majority of people said they had (or would get) one, several answered: “never,” “not me,” or “I got the flu from the shot.” It seems to me this is a dangerous way of looking at a vaccine that saves lives. I got mine in October.

The National Multiple Sclerosis Society thinks getting a flu shot is a no-brainer. Its website says:

“The seasonal flu vaccine has been studied extensively in people with MS and is considered quite safe, regardless of the disease-modifying therapy they are taking. However, individuals being treated with Lemtrada® should be given the inactivated flu vaccine six weeks before receiving their Lemtrada infusion.”

That NMSS webpage is a good source of more detailed flu vaccine information with information related to specific disease-modifying drugs.

Can the vaccine give me the flu?

Doctors say the flu vaccine doesn’t give you the flu, but here’s why some people may think it does, according to the CDC:

  • Other respiratory viruses cause symptoms similar to flu and also spread and cause illness during the flu season. The flu vaccine only protects against influenza, not other illnesses.
  • It’s possible to be exposed to influenza viruses, which cause the flu, shortly before getting vaccinated or during the two-week period after vaccination that it takes the body to develop immune protection. This exposure may result in a person becoming ill with flu before protection from the vaccine takes effect.
  • The flu vaccine can vary in how well it works and some people who get vaccinated may still get sick. That seems to be the case this flu season.

Have you had your shot?

The flu generally peaks in February, so there’s still time to get a shot. You can get one in nearly any pharmacy in the U.S. and, in most cases, it’s covered with no co-pay. If you’re still on the fence, at least hear what your doctor has to say about it.

I’m very glad that I got my flu vaccine again this year, as my wife and I have for decades. I’m really glad that my son and his family all had theirs. Though they’re sick they’re getting better. Their illness could have been worse.

(This is an updated version of a column that first appeared on http://www.multiplesclerosisnewstoday.com)

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Monkey See, Monkey Do: Helping Hands for People with MS

I was just monkeying around while on vacation a few weeks ago, amazed that the animals jumping between my wife and myself were actually listening to the commands of their owner. I knew that chimps and apes were smart, but seeing monkeys respond to commands was new to me.

I had no idea how well some monkeys can be trained until I read an article in Neurology NowThere, I discovered that some of these little guys are helping people with MS and some other disabilities with their daily activities.

These service monkeys are capuchins. They’re considered to be the most intelligent of the monkey family, similar to chimps and, some say, as bright as a 3-year-old. Since moving in with MS patient Corrine Peters, who’s profiled in the article, a capuchin named Glassie has learned to take off Peters’ shoes, retrieve objects, and help get mail out of her mailbox. Capuchins can also be trained to turn book pages and door knobs and even scratch an itch or groom a patient:

The monkeys are trained to do all this at a nonprofit organization called Helping Hands, and it’s not a quick or simple task, as the Neurology Now article makes clear:

“The monkeys are raised from infancy with a foster family to become accustomed to living in a home. At about age 8, they are transferred to “Monkey College” in Boston, where trainers work one-on-one with them — a process that can take up to five years.”

Once a monkey is placed in a home, a trainer spends about a week with the family getting the capuchin and the family comfortable with each other. And then there’s continued telephone support.

It’s also not a simple task to obtain one of these six-to-eight-pound helpers. The application process may take as long as six months and it requires interviews with family members and caretakers and a video tour of a patient’s home. And not everyone is eligible. For example, you need to spend most of your time at home; to be able to control a wheelchair; and there can be no young children in the home. Also, the Helping Hands website cautions that not every patient will find a monkey match.

“The application process is deliberately designed to give us adequate time for this exploration. For most applicants, this takes three to six months. Applicants who complete the entire process may be matched with a carefully selected monkey helper. For others, the process will reveal that a monkey helper is not the right fit.”

But when the fit is right, the match can be a life-changer. Helping Hands’ Erica Noyes, quoted in Neurology Now, says having a monkey “puts the recipient back in control. The monkey doesn’t see the person as injured or ill. It sees him or her as its protector and boss.” And, says Corrine Peters, “Every day is a new adventure.”

(This post first appeared as my column in http://www.multiplesclerosisnewstoday.com)

My Lemtrada Journey: A New Year’s Update

Happy new year to all.

The start of the new year seems like a good time to assess what my journey has been like since my first round of Lemtrada (alemtuzumab) back in December 2016. The road has had bumps and hills and dips. But, overall, Lemtrada has taken me where I hoped it would — a place where my MS seems to be stable and my symptoms seem to be a bit improved.

The first three months post-infusion were a real roller coaster. The lowest dip was in late January of 2017, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days I was much better.

Around the five-month point, my wife thought I was walking a little better. That’s still the case, but not always. I can flex my left foot up from the ankle just a little. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been reduced significantly. An MRI of my brain at six months showed no new, active, or growing lesions. But my brain scan has been stable for many, many years anyway. It’s the lesions on my cervical and lumbar spine that are giving me mobility problems. On the other hand, a physical exam by my neurologist confirmed what my wife Laura had detected: I was walking a bit better. So, all positive stuff.

Other small changes involve my B&B: bladder and bowels. Sorry if I’m over-sharing, but I’m happy to report that my bowels have become slightly more regular and my bladder control has improved, with less urgency and less frequency. Most nights I’m up only once to make a pee trip and, occasionally, I even sleep a straight six or seven hours. That alone is worth the price of admission to the Lemtrada roller coaster.

Are there still problems?

Back in February, I developed an aching pain in both hips. At times, that pain would shoot down one or both legs when I put weight on them. My neuro told me it wasn’t related to the infusions. Some Lemtrada patients suggested that it’s the feeling of my body “making new bone marrow.” The shooting pain disappeared last spring. The ache remains today, but it’s much less noticeable.

Last fall, I developed a pain in one shoulder that runs down my arm when I move it to certain positions. It feels like it’s in my muscle and I’m thinking it may be tendonitis. It seems to improve with rest and staying away from my keyboard (!), and I’m planning to try some physical therapy to see if that helps.

What about my labs?

Lemtrada is designed to deliver a knock-out punch to B- and T-cells that carry an antibody that’s thought to play a roll in destroying myelin. When the immune system reboots, it’s hoped the new B- and T-cells will appear minus that rogue antibody.

Because the Lemtrada treatment attacks parts of our immune system, we “Lemmies” have a fixation with the results of the monthly lab tests that we’re required to have. So far, they show my treatment is acting as advertised. After one month, my CD-4 count was down to 40 (normal is 359-1,519) and my CD-4 percentage was 10 (normal is 38.8-58.5). That showed the drug destroyed a bunch of T cells, as it should.

A month later, the CD-4s were above 200, which is the level at which anti-viral medications are no longer required. That count has hung just below the normal range ever since. That’s to be expected. CD-4 measures T-cells, and we want them to return slowly, over a year or even much longer.

On the other hand, B-cells are expected to return to normal after six or eight months. (That’s why Ocrevus, which only attacks B-cells, requires an infusion every six months.) I’m happy to say that at six months, most of my B-cell measurements were just a little lower than normal.

Then, there’s the TSH count, which measures thyroid function. That’s an important measurement because Lemtrada can impact thyroid function. I’d been on a thyroid medication for a number of years prior to Lemtrada, so when my TSH count began to rise slightly above normal at about the 10-month point, it was a simple matter to correct that by slightly changing the dose of my thyroid med.

Ready for round 2

Well, not quite yet. Normally, I would have had an MRI and a visit with my neuro last month in advance of round two. But my wife and I left Maryland on New Year’s Day to drive to Florida, and my doctor and I decided that the MRI, the exam, and round two could all wait until after our late March return home. Look for my next Lemtrada update in early Spring.

(The post first appeared as one of my columns in www.multiplesclerosisnewstoday.com)

MS Marketing Study

I’m not familiar with Baltimore Research so I can’t vouch for them. However, this information was sent to me by the folks at Can Do Multiple Sclerosis, which is a solid organization. Since many of you may be interested this marketing research I’m passing it along FYI.

Ed

Baltimore Research has a study coming up that you or someone you know may be interested in. If you know of someone who might be interested, please forward this email to them.

We are looking for 18-64-year-olds who have been diagnosed with MULTIPLE SCLEROSIS (MS).

Those who qualify and participate will receive $150 for their time and opinions.

To see if you qualify, please call our office at 410.583.9991 and reference Project Hazel. You will then be directed to a recruiter who will ask you a few questions to see if you qualify for the study.

Please be assured that we are not selling anything, nor is this for clinical trials or endorsement for any products. This is for market research and we are only interested in your opinions.

Thank you,

Baltimore Research

Dancing in the Rain

When writing about the challenges of MS I often share some advice that’s printed on a wall-hanging my wife picked-up a few years ago: “Life isn’t about hiding from the storm, it’s about learning to dance in the rain.”

This dancing isn’t in the rain but this video, from the French TV show “Got Talent,” gives true meaning to those words:

(You’re invited to follow my regular columns on http://www.multiplesclerosisnewstoday.com)

 

She Has #MS and She Just Hiked 500 Miles!

Well, 460.75 miles (741.5 km), to be exact.

When I wrote about April Hester in late September, the headline on my post was “She Has MS and She’s Hiking 500 Miles.” Well, she did it, hiking the Palmetto Trail from Walhalla, in the South Carolina mountains, to Awendaw, on the coast. With husband Bernie alongside, April completed the hike on Nov. 3. The couple had expected the hike to take 35 to 40 days. They did it in 34!

April with MS Warrior

April with Madeline, newly diagnosed with MS, who drove eight hours to hike a bit with April.
(Photo courtesy of Bernie Hester)

April was diagnosed with MS in 1996, just after she turned 20 years old. Like many of us, she has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot. April used “trekking” poles for the hike, even when the trail took them through through the downtown sections of some towns. She also wore ankle braces.

Needless to say, the hike wasn’t easy. Over the first seven days, the Hesters covered almost 100 miles of mountains, with some sections that were almost vertical walls. Bernie Hester tells me, “April nearly lost two toenails but we pushed through all the pain.”

The further she goes the stronger she gets

April is on one DMD, Gilenya. She also tries to eat a lot of vegetables and fish. But, Bernie says, the hiking exercise is what really builds April’s strength:

April crosses the stream

Tough going as April crosses a marsh. (Photo courtesy of Bernie Hester)

I can say from watching the progression that, as hard as it was on her in the beginning, the more exercise she did the stronger she got. The transformation happened right in front of me and it was amazing to watch. The hardest part was getting started with all the falls, short distances, quick breaks needed and learning curve of how to do long distance with MS. But once we got it down, she just got stronger and stronger.”
That’s probably a good take-away for all of us who are able to do some sort of exercise, but who don’t. Day three, as Bernie told me, was “a tough day as we ascended to Sassafras Mountain, the highest peak in South Carolina. April had a lot of struggles and we only managed to cover nine miles that day. But she pushed hard so we could make the summit and we were rewarded with a beautiful sunset.”

 

Isn’t that the kind of effort and reward that those of us with MS should try to seek every day?

Why did she hike?

April hiked the trail to raise awareness about the fight against MS. She also hoped to raise money for the National MS Society. Unfortunately, she fell short of a lofty goal. There’s still an opportunity to make a donation, however, by clicking here.

You can also read Bernie’s day-by-day journal of the hike by clicking on April and Bernie’s Trail Journals web page.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com)

Flu Shot or No Flu Shot for MS Patients?

It’s that time of year again. The time of year where I keep seeing posts on MS social media sites asking, “should I get a flu shot?”

In my honest opinion, yes, definitely! There are certainly different opinions about this, but I think that my opinion is the same as that of nearly any doctor that you’ll ask. For example, here’s a what a couple of doctors have to say in a U.S. News and World Report article that’s specifically about MS and the flu:

Dr. Robert Shin, director of the Georgetown Multiple Sclerosis and Neuroimmunology Center: “The flu infection may stimulate the immune system, which may in turn trigger an MS attack.” Note that Shin says the flu, not the flu shot, is what should worry you. He says that getting the flu, or any illness, raises that chance that you’ll have a relapse or a worsening of your symptoms.

Dr. Amesh Adalja, an infectious disease specialist with the Johns Hopkins University Center for Health Security: “When you see flu outbreaks, you see MS relapses.” 

If you just think about what happens to your body in hot weather, or when you have a fever, then the flu-MS connection should be clear.

Docs sat the flu shot doesn’t give you the flu

Are you worried that getting a flu shot can give you the flu, or make you sick with something else? Doctors say don’t be. The flu shot uses a killed virus to protect you against the flu. So it’s highly unlikely that the vaccine will give you the flu. In fact, Dr. Shin says “infection really is impossible.”

On the other hand, the nasal flu vaccine is created from a live virus. The Centers for Disease Control and Prevention recommends against anyone using the nasal vaccine, because there are concerns about its effectiveness.

Since the flu vaccine takes about two weeks to become fully effective, it’s possible that some people who’ve had a shot will still get the flu. There have also been some years where the vaccine hasn’t been a good match for the strain of flu that was prevalent in those years. This may lead some people to believe that the shot gave them the flu when, in fact, it didn’t. It just, for whatever reason, failed to protect them from catching it.

For a lot more detail…

Here are a few places where you can obtain more information:

U.S. Centers for Disease Control and Prevention (CDC)

National Multiple Sclerosis Society

A “STAT News” story, with an international overview

Of course, you should always check with your own doctor.

We had our shots

My wife and I got our flu shots in October, just as we’ve been getting them for many years. Neither of us has ever had a problem.

 

(This post first appeared as one of my columns on http://www.multiplesclerosisnewstoday.com)