Ocrevus, Hope and a Suicide Postponed

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay.

Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years.

Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he changed his mind.

Campbell has been writing about his MS for the Sunday Herald in Glasgow since late April. (He’s also the paper’s “Beer of the Week” writer.) He describes himself as “a man on death row,” and on May 20, his MS article began, “Well, unfortunately I am still alive.”

Campbell has mobility problems, and living in a second-floor flat has been tough for him. He says he’s had no support in getting ground-floor accommodations. He complains that he was recently discharged from a hospital without the possibility of receiving home care. He has no caregivers and exists on microwave dinners.

Campbell had hoped that a stem cell transplant would allow him to live a life that was worth living, but his neurologist told him that he thought HSCT would be too risky. So, at age 56, Campbell made plans to die.

Then came a glimmer of hope. In a column he wrote two days after he had been planning to die, Campbell explained that a former police sergeant named Rona Tynan gave him a reason to live, at least a little while longer.

“Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed,” Campbell wrote.

That treatment is the disease-modifying drug ocrelizumab, sold in the U.S. under the brand name Ocrevus. The U.S. Food and Drug Administration approved it a few months ago, and it’s the only drug approved to treat progressive MS. Some neurologists refer to it as “stem-cell lite” because of the way it attacks the rogue B-cells that are believed to cause MS. Ocrelizumab is expected to be available in Scotland later this year.

“For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting risk-free treatment for multiple sclerosis sufferers within the next few years,” Campbell writes. “The timing could not have been more perfect — although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.”

Colin Campbell’s hope, now, is that Ocrevus will halt the progression of his MS and avoid a future that he pictures as becoming bedridden, needing help to eat and bathe, and using a catheter. He’s not sure how much hope he realistically should have, but he ends his June 17 column with: “Wish me well.”

That, we certainly do.

****

(This post first appeared as my regular column on www.multiplesclerosisnewstoday.com)

My Lemtrada Journey: 6 month report

It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?”

The answer: I’m not sure.

For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly, but steadily, declined.

So, I’m really not sure how much of an impact any of the disease-modifying drugs that I’ve been on since 1996, including Lemtrada, have had on my MS. I like to think that all of the shots, pills, and infusions that I’ve been treated with over the past two decades have, at least, slowed the progression of my disease, but it’s really hard to know for sure.

Enter Lemtrada

As you probably know, Lemtrada is designed to halt further progression of MS. In addition, some patients have had some symptoms reversed. But that benefit wasn’t expected, it just sort of appeared during the clinical trials. On the other hand, more than a few patients are reporting a variety of negative symptoms following their infusions.

My 6-month timeline

The first three months post-infusion were a real roller coaster. The lowest point on the ride was at about two months post-infusion, 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 better. Today, just past six months, I think I am — sometimes, but not always. I also can flex my left foot up from the ankle just a little, and I think that’s new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been significantly reduced. So, all positive stuff.

But, on the other side of the coin, I developed an aching pain in both hips around mid-February. At times, that pain would shoot down one or both legs when I put weight on them. It’s been worse in the mornings, particularly if I’m trying to get up from squatting down. But, is this drug-related, or is it something else? My neuro says it’s not related to the infusions. Some Lemtrada patients have suggested that it’s the feeling of my body “making new bone marrow.” I just don’t know.

This pain has slowly eased since it began four months ago. That improvement may be related to receiving physical therapy treatments in April and May and getting back into the swimming pool in June. That physical therapy and the swimming may also be responsible for the mobility improvements that I mentioned earlier. Or is it the Lemtrada? Or, maybe it’s a combination of both.

The six-month mark is the time at which, I’ve been told, the ups and downs tend to level out or to swing upward. That seems to be the case with me. So, I guess it really doesn’t matter whether it’s Lemtrada, or PT, or swimming that seems to be helping, or if it’s the drug or the natural course of my MS that’s responsible for my low points. I’ll continue doing what I’m doing and hope for the best.

(A version of this first appeared as my column on www.multiplesclerosisnewstoday.com)

 

If You Have MS You Need to Speak Up Now

This came into my inbox today and I think it’s important to pass it along to as many of us with MS, or another chronic disease, in the U.S. as possible. We may never have another chance to stand in the path of these cuts.

Health care ad

Here’s why we’re opposed to this bill:
  • Many families will have to pay higher premiums.
  • If you’re fifty or older, insurers could charge far more than they do now.
  • There are millions of Americans on Medicaid, including children, the elderly, and people with disabilities that would be cut off completely.
  • People with pre-existing conditions could be priced out of meaningful insurance.
  • Americans could face lifetime and annual limits on care.

Speak up now before it’s too late.

Don’t let Congress jeopardize your health. Call your U.S. Senators at 202-224-3121 and/or write to them today.

 

In case you missed my live FB stream…

You can see a recording of this afternoon’s live stream on the MS News Today Facebook page here. I’m sharing my experiences with various DMDs that I’ve used over the past 20 years or so.

I’ll be live on Facebook talking about DMDs for MS Fri., 22 June, 3pm edt

I hope you can join me Friday on the MS News Today Facebook page to share experiences using Disease Modifying Drugs. The live stream will begin at 3:00 pm eastern time, 7:00pm GMT, and will run about an hour.

Ed

An MS “House” That Lets You Walk in My Shoes

Several months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.MS House sign

People walking through the MS House are able to see and feel things from a different, and often difficult, perspective. For a short while, as they walk through guided by headset audio, they can better understand what multiple sclerosis is all about.

The living room

Living room
(Photo by Andreea Antonovici)

A TV displaying half-definition pictures is used to illustrate vision problems. An armchair that’s set very low to the floor demonstrates the difficulty of getting up from a chair due to leg strength issues and fatigue. A sign explains that MS fatigue is like sitting down, and you’re so tired that you can’t get up again. An inflatable mattress is on the floor to simulate how someone with MS has difficulty balancing while walking and may be very wobbly.

The kitchen

A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms.

The study room

Study room
(Photo by Andreea Antonovici)

A “jumbled” computer keyboard simulates how cognitive problems may make it difficult to find the correct word to use when typing. These problems are also illustrated by an “Alice in Wonderland” book where the same page is read over and over again because, by the end of the page, the reader has already forgotten what he read. Ankle weights appear under a sign that says “Don’t drag your feet,” and then describes how people with MS can feel as if they’re walking through sand.

The bathroom

An infrared heater and a blurry mirror are used to simulate how a hot shower or weather can flare MS symptoms.

On display

The MS House was created under the sponsorship of the European Multiple Sclerosis Platform. It was displayed to mark World MS Day at a meeting of the European Parliament in Brussels, May 30–June 1. It would be nice to find a way to put it on a worldwide tour to broaden everyone’s understanding of what those of us with MS experience in our lives.

My Lemtrada Journey: “Do You Think You’re Walking Better?”

“Do you think you’re walking better?”

The question came from my wife, Laura. It’s now about 4 1/2 months since my first round of Lemtrada infusions and I’ve had ups and downs physically. The day she asked, I was feeling pretty good. I also think I’ve been sharper mentally than in the past. Yet I wasn’t sure I’d noticed any improvement in my mobility.

“I don’t know,” I told her. “Maybe. It’s hard to tell.”

But she could tell. “Well, I think you’re walking better.”

Laura is a retired physical therapist, so she looks at my walking with a professional’s eye. My left foot drops and that leg drags. She thought the drop and drag were looking a bit better, and she told me to see if I could put my left heel down first when I walked.

I couldn’t do that but, in trying, I could see that my toes flexed upward, just a bit, rather than dragging. I could also lift my whole foot a fraction of an inch off the floor as I moved my left leg forward. So, yes, I seemed to be walking a bit better. Laura also noticed that I was standing straighter. Again, once she pointed it out, I could see she was right.

The next day I improved a bit more. Now, after getting rid of my usual morning stiffness, I find that, if I concentrate, I can lift my left foot high enough so that I can pretty much put my heel down first. And I’ve been able to do that for a couple of days now.

The last time I wrote about my Lemtrada journey was three months ago, and my roller coaster was spending more time in the dips than in the peaks. My fatigue was up and down. On several days it was tough to get out of bed. Other days I felt good when I woke up, but took a dive in mid-afternoon, and had to nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level.

Then I developed a fever and dry cough, which was diagnosed as a strep infection. It took an antibiotic, and about two weeks of rest, to regain my energy. Since then I’ve been on a plateau, not feeling bad, but not experiencing the walking improvement that some Lemmies report. Not until Laura’s six words the other day: “Do you think you’re walking better?” And, I do.

Of course, not everything has been perfect. I’ve written about a pain that I developed several weeks ago in my hips and thighs, and it’s still with me. I’m getting some physical therapy to see if that will help. And I’m stiffer than I’ve ever been in the morning.

My first post-infusion MRI and an appointment with my neurologist are scheduled for mid-June. I can’t wait to see what the scan and her 25-foot walking test show. Stay tuned.

(This is an updated version of my column that first appeared on www.multiplesclerosisnewstoday.com)

 

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