Category Archives: Lemtrada

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)

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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)

 

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)

 

Lemtrada for my MS: Ups and downs

It’s been a month since I last posted here.  I’m sorry.  I’ve been spending my time riding a roller coaster.

It’s the roller coaster of reactions that I was told to expect following my Lemtrada infusions.  I managed to avoid most of those reactions for the first month and I thought that I was home free.  Ha!  What could I have been thinking?

Month-two began with a good lab report but also with an appearance of the fatigue roller coaster.  On several days it was very tough getting out of bed.  Other days I felt good when I woke up but took a dive in mid-afternoon and had to head back for a nap for a couple of hours.  Many nights involved multiple “pee” trips, which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s been an uncomfortable ride. One day I finally listened to my body and spent the whole day in bed.  It helped, but it didn’t stop the coaster.

I had a slow start today, but since I got going I’ve been feeling pretty good.  I even had a good physical therapy session in the afternoon and I’m still here, cranking at the keyboard, in early evening. But who knows what morning will bring.  The uncertainty of all this makes me wonder if I made the right decision, at age 68, to switch from Aubagio to Lemtrada.  My MS lesions have been stable for years. Though my mobility has slowly and steadily decreased, I was never really faced with the prospect of not being able to have a good idea of how much fuel would be in my tank to start each day.  But, I’m on the road now.  No U-turns on this one.

As many of you know, I write a column, twice a week, for www.multiplesclerosisnewstoday.com. That’s where I’ve been devoting most of the fuel that’s been in my tank recently.  Apologies for my absence.  Hopefully, the coaster will crawl to a stop soon.

Oh, by the way, the women in the picture on the top of this blog are two very important members of my Lemtrada team; Dr. Heidi Crayton and Carrie Blizard Potter, R.N. They warned me this would happen!

 

 

 

Lemtrada: Is this MS Drug HSCT “Lite?”

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

My neurologist calls Lemtrada “HSCT lite.”  She says that not only is the drug able to reduce exacerbations and limit the overall progression of Multiple Sclerosis, it’s actually reversed some symptoms in some of her patients.   I guess I’m going to find out if she’s right about Lemtrada because I’m getting ready to start using it.

Lemtrada Targets MS-related Cells

Lemtrada, which carries the generic name alemtuzumab, was originally approved by the Federal Drug Administration, at a much higher dose, to treat B-cell chronic lymphocytic leukemia.  The drug is a humanized monoclonal antibody which seeks out and destroys specific immune cells that carry a protein called CD52.  These are believed to be the white blood cells that attack the central nervous system in people with MS.  After those cells are removed, the body manufactures new white blood cells that don’t carry the MS-related protein.  Thus, the similarity to stem cell replacement therapy.  That therapy uses chemotherapy to destroy most of the body’s immune system cells. Then, fresh stem cells are infused into the body which, over time, create new white blood cells.

Unlike other Disease Modifying Therapies (DMTs), which require injections every few days or monthly infusions, patients receiving Lemtrada are treated once a year, for two years.   The first year the drug is infused daily for five days in a row, on an out-patient basis. Each infusion takes about four hours and the patient is watched for another two hours afterwards.  A year later that process is repeated, but for only three days.  And that’s it. (In a few cases patients have undergone a third round of infusions).

lemtrada-graphic

In a study, conducted by researchers at Queen Mary University of London and published in the October, 2016 issue of Neurology, nearly half the patients treated with alemtuzumab (Lemtrada) showed improvements in all 7 functions on the EDSS functional scale two years after treatment began. (EDSS functions include things such as limb movement, numbness, speech and bladder and bowel functions).  Those results, the researchers write, “suggest that such disabilities may often be reversible (at least partially) in patients with active RRMS if they receive suitable therapy, irrespective of the type of baseline functional deficit.”

My own neurologist tells me that one of her wheelchair-bound patients has regained some walking ability.  There are stories about similar mobility improvements by patients who have commented on the Facebook page “Lemtrada for MS Treatment.”  And, there are also stories there from patients who saw no improvement.  It’s worth a look by anyone considering using this drug.

There are Risks

This treatment is not without serous risks.  They include autoimmune problems that could result in severe bleeding or kidney problems, serious infusion reactions and an increased chance of getting certain types of cancer.  Patients receiving Lemtrada are required to have their blood and urine tested monthly and they’re monitored very carefully for as long as four years.

Some patients are also reporting side effects during and after the infusion.  These can include fatigue, headaches, hives, a fever nausea and leg pain.  Many of these are being reported on the “Lemtrada for MS Treatment” Facebook page

Anyone considering Lemtrada will have to have a discussion with their neurologist and then determine whether the possible benefits of this treatment outweigh the risks.  For me, the balance falls on the side of the potential benefits.  My first series of infusions is scheduled for the first week in December and I’m sure that I’ll be writing at least one column that week with an IV stuck in my vein.  Stay tuned.