Monthly Archives: October 2016

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.

 

Pilates for M.S.?

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

Have you tried Pilates to improve your mobility?  When my wife and I tried it, a few years ago, I thought that it was sort of like doing yoga stretches using exercise equipment.  It felt good and, for the short time that I did kept it up, Pilates seemed to improve my flexibility, somewhat.

Pilates is a stretching and exercise program focuses on trunk muscles and there’s plenty of evidence that, in healthy folks, it improves flexibility, balance and muscle endurance.  But there haven’t been many studies that have examined whether people with MS receive the same benefits.  One of the few that was done came from researchers at Izmi University in Turkey and was published, last March, in the Journal of Physical Therapy Science.

Pilates Versus Traditional Exercise

In the Izmi study twenty MS patients were studied, 65% of them women.  Eleven did Pilates exercises and the remaining 9 exercised traditionally. People in both groups were, on average, in their late 40s and had a disability score of about 3 on the Expanded Disability Status Scale (EDSS). (Someone with an EDSS score of 3 is pretty mobile, with no impairment to walking). All of the patients had had MS for about 15 years.  The exercise program was organized in two weekly sessions, each 45–60 minutes long, for eight weeks.

That study found that both groups improved on all physical performance tests, including rolling to the left and right, sitting up from sitting and standing from sitting, as well as a 50-foot walking test.  The patients using Pilates, however, also improved their balance, had less fatigue, and improved their scores on a cognitive test. The patients who were doing traditional exercises improved their arm function and their performance on the timed up and go tests.  A second analysis found that cognition and quality of life were better only in the Pilates group.

Pilates Versus Physical Therapy

Another study was conducted at Israel’s Sheba Medical Center.  This one compared Pilates with physical therapy. Forty-five MS patients participated with half receiving 12 week of outpatient PT and the other half receiving Pilates sessions.

The results, published in Clinical Rehabilitation, showed that both groups had significantly increased their walking speed and the length of their walking strides. Overall, the researchers felt that both approaches helped MS patients.

How About You?

Interested in trying Pilates?  The Mayo Clinic has some excellent information about it on its web site.

Have you ever tried Pilates?  If so, did it help?  Please let me know about your experience.

 

 

Getting Older With MS – Some Tips from MS “Seniors”

(This was first published in my column on http://www.multiplesclerosisnewstoday.com)

I hate to admit it, but I’m getting kind of old.

That’s not to say that 68 is really old, but I’m probably older than a lot of the people who are reading this.  I’m also 36 years old in “MS years.”  I was diagnosed the month that Ronald Reagan won the Republican nomination to run for U.S. President and I’ve had MS nearly half of my life.  In other words, my MS and I have traveled down lots of roads together.  Can you learn anything from the way that MS senior citizens have handled our disease?

A recent study looked nearly 700 of us who are older than 55 and who’ve been living with MS for more than 20 years.  The goal of the researchers at Memorial University, St. John’s, Newfoundland was to uncover common factors that allow us to age well, even with our MS. It’s hoped that learning from those experiences can help young and middle aged people with MS plan to live better lives as they grow older.

Seven themes were identified in the research, which was published in the Multiple Sclerosis International journal last August:  social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances.  But the first three jumped out as being the most important.

Social Connections

Social connections was the most common factor that participants said contributed to their healthy aging.  This included relationships with family, neighbors and even pets; Activities outside the home that provided opportunities for social engagement were also highly valued and included support groups, volunteer work, and community organizations.

Said a 59 year old woman from Quebec, “my volunteer work with my dog and the hospital (patient advocacy) has kept me stimulated.”  And a 66 year old woman from Nova Scotia valued “people close to me who accept my MS and give me all the encouragement and support that I need, plus allow me to do the activities that I wish to do and at my level and speed.”

Attitude and Outlook

Attitude and outlook was the second in importance. Older people with MS reported adopting ways of thinking that helped them to cope with the challenges of living with MS. That meant doing simple things such as having a positive attitude and being optimistic.  Determination and perseverance was also important.

Michael, 64 years old from Ontario, reported: “Being determined has helped – I should have stopped work (teacher grade 1-3) five years before I did, perseverance.”

Participants also reported that they accepted their MS. They said they understood how to work within their limitations and to focus on their abilities. Humor and maintaining their self-identity were also important.  People frequently explained that “I am not my disease.”

Lifestyle Choices

This, basically, meant they took care of themselves.  Choices included eating healthy getting exercise and adequate rest, managing medications and using alternative therapies.

“I have a healthy diet and get lots of rest,” 57 year old Karen reported. “This year I am able to take Wednesdays as a sick day. This is extremely helpful. I can’t walk because I don’t have much strength in my legs. I get exercise on my exercise bike. I do 20 minutes a day. It really helps me feel better. I do not eat red meat.”

It also meant doing things like having a hobby, working, being outdoors and traveling.  Very interesting to someone like me, who writes about MS, is that this included searching for resources and information about MS as an activity that contributed to their sense of purpose.