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Lemtrada: my personal account of how important getting your monthly blood tests are

12 September 2016

Lemtrada: One patient’s personal account of how important getting your monthly blood tests are

In August 2014, I started treatment with alemtuzumab (Lemtrada) for MS.  While effectiveness of MS  treatments varies from patient to patient, following 2 infusions with Lemtrada and my 2 year follow up MRI (being 2 years since my first Lemtrada infusion), I am very happy to report that Lemtrada seems to have worked for me.  Even taking into account what I say below, I would do Lemtrada all over again.  Even before the MRI I would have felt the same as I knew my body was responding to Lemtrada. 

I knew the possible side effects of Lemtrada (neutropenia, idiopathic thrombocytopenic purpur (ITP) and thyroid problems to name some of the more serious ones).  It is important to know that it is rare for MS patients who are on Lemtrada to experience neutropenia and ITP.  Patients are more likely to experience thyroid complications. 

My neurologist clearly explained that these side effects were unlikely to occur immediately.  But that rather the peak risk period was roughly 2 years following my first infusion.

I was fortunate enough to be part of a trial group – so ahead of those patients who came onto Lemtrada following its listing on the PBS in April 2015. 

I fully understood that it was essential that I get my blood test done each month, as required by the drug protocol, to ensure that nothing was going awry but that if it were, early intervention could occur.

For the first 18 months nothing eventful occurred.  Then in January 2016, a few results came back which were not within normal parameters.  But with repeat blood tests, I got back into the normal range.

I began to learn more and more about what the normal ranges were for both platelets (lack of which can cause bleeding without the ability to clot, and in some patients, death, if not detected early enough) and neutrophils, a type of white blood cell that helps fight infections.

I committed those normal ranges to memory: (1) platelets between 150-450 (2) neutrophils between 2 – 7.5.

Then in June 2016, it became apparent that I was suffering from neutropenia – having a neutrophil count of less than 1.  Although I felt flu-y, there was nothing to suggest that my neutrophils were at 0.3.  That was a rude shock.  I was hospitalised immediately and started high dose oral prednisone.

The neutropenia resolved and the doctors and I all congratulated ourselves on having it picked up and treated early. 

July 2016 rolled around and one good set of blood results lulled us all into a false sense of security.  But this time it was the platelets’ chance to give us a scare.  They fell to 41 and it was confirmed that I had ITP.  (I have the highly dubious distinction of being the first Australian MS patient on Lemtrada to get ITP!)

Once again, I did not feel unwell and was asymptomatic.  I did not have bleeding from the gums, bruises, mouth blood blisters, or petechiae, which are tell -tale signs which I knew to look for.  I was again hospitalised and received IV immunoglobulin (IVIG) over 3 days, in conjunction with prednisone.  Once my platelets hit 150, I was discharged.

My platelets appeared to normalise and again I was relieved that the early intervention had been a success, particularly when 1 blood result post my discharge seemed to confirm this.

Then, unusually for Lemtrada patients, the ITP returned.  The first time, my platelets dropped again into the 40s and then to 13

I was hospitalised immediately for further IVIG treatment, along with another platelet stimulating drug, together with ongoing prednisone. 

Two hours before I got the news that my platelet count was at 13, I was raving to an MS nurse about how great I felt and how I really felt amazing, all things considered.  I had even gone out for breakfast that morning to my local café where everyone remarked that I looked really good and I was in high spirits!

Were it not for me taking blood tests – now more regularly – there would have been no way for my doctors or me to know just how low my platelets had dropped nor the magnitude of the risk to my health.

Following my last hospitalisations, my teenage son asked me: why did you even agree to do this drug when you knew the risks?  And my response was: Lemtrada was the best available treatment option for me and that with the mandated monitoring (the monthly blood tests) the risks could be managed and any side-effects could be treated, provided that they were detected early. 

I understood when I first went on Lemtrada that it was vital that I get my monthly blood tests done.  I knew that failure to do so can lead to catastrophic consequences. 

Getting a monthly blood test is a pain – there are no two ways about that.  Particularly if you aren’t located in a major metropolitan area with easy access to pathology facilities. 

However, not getting them done and therefore not getting treatments early enough to address any side effects is not just a pain.  It could result in a much worse outcome for you, even though the likelihood of experiencing what I did is rare.

No one can compel you to get your monthly blood tests.  Ultimately you are the person in charge of your health.  But with that comes a responsibility: to yourself and to your family and friends.  It doesn’t matter how well you feel, or that you are asymptomatic.  As my experience demonstrates, neither of these tells the full story.  Only the blood tests will give you that full story.

Note that if you experience any of the symptoms of ITP I described above (bleeding from the gums, bruises, mouth blood blisters, or petechiae) and you aren’t due for a regular blood test, use a spare form and go and have your blood taken out of your usual monthly routine.  There will be enough blood to go round! 

Comments (1)

Hi Sarah, how closely this echoes my own story! Not lemtrada in my case but gilenya. After being on gilenya for a year my MRIs were looking great and I was slowly slacking off with my blood tests.. I knew something was wrong when I couldn't stop bleeding, was lethargic and had a strange red bruise all over my body. A blood test quickly confirmed it was ITP and I was rushed to emergency with only 12 platelets. Luckily I didn't need immunoglobulin and was instead put on a course of steroids and taken off gilenya to fix the problem. My neuro was shocked that gilenya had caused thrombocytopenia but apparently the haematology department at Monash had seen it a few times before. ITP is not a listed side effect of gilenya so now the hospital is trying to get it added. Of course I would get a side effect so rare that no one knows about it! Would love to go on lemtrada but given my track record with reacting adversely to medication (Tysabri gave me interstitial lung disease!) my neuro is hesitant to put me on it. Great to hear it has worked for you though!!