Tag Archives: Lemtrada

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)

 

Starting Down the Lemtrada Road

[This is an updated version of my column that first appeared on http://www.multiplesclerosisnewstoday.com]

The final drip of my first week of Lemtrada infusions will drop in about 30 minutes.  The headline is: It was a good week with no significant problems or discomfort.  I’ll be writing about this experience, in detail, in my next column.  But first, for those who aren’t yet up to speed on my journey, some background.

A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis and is also being used by some people who have the progressive forms.  There have also been many reports of some people who have had some symptoms improved.  But, I was writing about those reports.  Now, it’s personal.

Treatment Starts Before the IVs

Two days before my first infusion I began to pre-medicate to reduce the chance of some side-effects. I’m taking Acyclovir to reduce the chance of contracting the herpes virus. Doctors say that Lemtrada treatments raise the chance of getting this virus for some people. The allergy drugs Zantac and Zyrtec are being taken to limit hives and rashes.  I also have on hand ibuprofen, Benadryl and hydrocortisone creme to use, if necessary, to treat any pain, rash, hives or any increased temperature.

The Infusions

The five days of infusions involve three drugs.  First comes Solumedrol.  My neurologist tells that it serves two purposes.  As a steroid it calms the body’s immune system. But it’s also a histamine blocker, serving as another guard against hives, rashes and the like.  I’m to receive 1,000 mg on the first three days, 500 mg on the second fourth and 250 mg on the final day.

Next comes 25-50 mg of Benadryl by IV.  Finally, the star of the show…the Lemtrada – 12 mg over four hours.  Oops, not done yet.  After all the drugs there’s a two hour “watch” period, during which IV fluids continue.  In all, 7-8 hours each day.  Whew!

Drink Up

For the next several months I’ll be drinking lots of water. (That’s going to be tough for this MSer who has spent the past 35 years trying to avoid water). My neuro, and most “Lemmies” who’ve had these infusions, say it’s the best thing to do to limit uncomfortable side effects.  Flushing the toxins and dying cells out of my system, they say, is the best approach to feeling as good as I can.

Watch What You Eat

There are also foods that I’ve been told to avoid for the first month after my infusions.  This is to reduce the risk of listeria.  They include:

  • Hot dogs and deli meats (This will be a hardship).
  • Refrigerated pates and meat spreads.
  • Unpasteurized milk and dairy products.
  • Soft cheese made with unpasteurized milk, e.g. Feta, Brie, Queso Fresco and Camembert
  • Raw sprouts
  • Smoked seafood
  • Raw fish, e.g. sushi (I wouldn’t, anyway).
  • Raw eggs or meat
  • Prepared salads, e.g. chicken salad, ham salad and egg salad.
  • Wash all vegetables and fruits thoroughly

And After the Infusions

For a time I’ll be continuing the meds that I began before treatment started and I’ll be taking Prednisone to taper off the IV steroids.

I’ve been told to expect a roller coaster ride of good and bad days for a week or two – headache, body aches and fever – some days feeling like I’ve crashed and burned and others where I’m feeling well. After a month I’ll be scheduling physical therapy. After four or five months I’ve been told that I should see an improvement in my overall endurance.

That’s quite a ride for a 68 year old guy to anticipate but, as I’ve said several times in writing about Lemtrada, the potential benefit makes the risk and discomfort worthwhile.

So, my fingers are crossed.  Unless I’m really dragging, and at the bottom of the roller coaster loop, I’ll be reporting on my ride in about another week.

 

 

 

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.