I recently had the opportunity to interview Marie, an RRMS patient from Australia who opted to try Lemtrada after doing a great deal of research about her options. She is open and candid about her experience, and I am so grateful to her for sharing this information in such detail. Here is our interview. Thank you, Marie!
1. What made you choose Lemtrada?
After being diagnosed in March 2014 and overcoming the initial shock and grief, I commenced interferon beta 1a (Rebif). I researched my options extensively. All evidence was suggesting that a more aggressive treatment approach was best undertaken early in the disease course. I needed to have an effective treatment within what I saw as my window of opportunity, even if that meant taking on risks while I felt otherwise well. I was fully aware that the measures of disease activity currently used only look at the tip of the iceberg. There was no guarantee that I wasn’t acquiring subclinical damage not measurable by current standards and that my reserve capacity wasn’t being slowly destroyed behind the scenes.
HSCT (Hematopoetic Stem Cell Transplant) — intensive chemotherapy followed by the infusion of the patient’s own stem cells – is only in trial phase in Australia and I didn’t meet the strict eligibility criteria. I could have elected to travel to receive this treatment overseas, but after two years of relative disease stability, I looked at other options that might be more appropriate for my disease status.
Lemtrada (Alemtuzumab) is an induction treatment that was listed on the pharmaceutical benefits scheme in Australia in April 2015. This means that the aim of the treatment is to produce an effect without ongoing lifelong maintenance. Whilst this was appealing to me, it was not the main factor in my decision. I wanted an effective treatment that offered the chance of long term remission. I also wanted to minimise brain atrophy, a factor not routinely measured but that is associated with long term disability outcomes. I considered the risks and felt that these were mitigated with close monitoring to allow timely and successful intervention if necessary.
I’d surrounded myself with a wonderful professional support team. My neurologist was initially apprehensive in prescribing such a treatment for me, but after careful consideration and after an MRI showed a new lesion in early 2016, he felt that this was a considered and reasonable treatment choice. I’d also consulted a haematologist when looking into HSCT and Lemtrada. Since both treatments have been used to treat haematological conditions for a long time, he provided valuable insight into the history and application of the treatments and was a key factor in my decision. The MS Society in my state has two wonderful and knowledgable nurses. I had a specific MS Infusion Nurse assigned to my treatment. My local General Practitioner was supportive and genuinely interested in my treatment.
2. What was the experience of the infusion like for you?
I received the treatment as an outpatient, where I attended the hospital day infusion ward for five days. I received IV methylprednisolone each day before the Lemtrada infusion. I was required to stay in the department for a two hour observation after the Lemtrada had finished each day. I felt confident in the abilities and experience of the doctors and nurses on the day infusion ward. I spent much of my time reading, watching a TV series and talking to my wonderful mother, best friend and brother and sister who all came to visit.
3. Was there anything unpleasant about the treatment?
I was fortunate in that I didn’t experience the common infusion related side effects such as a rash, nausea or headache. I did however experience tachycardia, chest tightness and heart palpitations.
This was very disconcerting for both myself and my doctors. Testing ruled out any serious heart or lung abnormalities and it was thought likely that these symptoms were a direct but temporary reaction to the histamines released in response to the Lemtrada. Under close observation I completed the treatment course with no real issues.
4. How are you feeling now, after the treatment?
Right now I’m only two weeks post treatment. As the effect of the steroids wore off in the days immediately after, I felt very lethargic. But over the next week I regained this energy and I actually feel back to baseline. Fortunately I didn’t go into the treatment with any significant disability, so I’m not looking for major symptom reversal. Stopping further progression of the disease is my primary goal.
Of course my immune system will remain suppressed for a while and I will need to be vigilant avoiding illness as best I can. This can be difficult with two young children, but I need to do my best to allow my body and immune system to recover.
5. What does the treatment plan consist of?
In March next year (12 months after my initial course) I’ll have three more infusions over consecutive days again. Then if all goes as hoped, I won’t require any further treatment and my ms will remain in remission! But if I do ever show new MRI or clinical activity, I can have subsequent infusions.
Importantly, I must have a monthly blood and urine test for the next five years (or four years after the last treatment course). This is essential to detect any secondary autoimmune diseases so that they can be treated early. The most common being thyroid disease (30%), ITP (2%) and Good Pastures (0.3%). The latter two are considered more serious, but are fortunately treatable if detected early.
So while I’ve had the treatment, it’s important I remain vigilant with ongoing monitoring.
6. If there’s anything else you can think of, or want to add, please feel free!
Some individuals liken treatments such as Lemtrada, which involve rapid and intensive suppression of the immune system, to ‘using a sledgehammer to crack a nut’. They feel it produces unacceptable amounts of collateral damage. But how can a more specific approach be developed when we don’t know the actual cause of the disease? What we do know is that ms is likely an autoimmune disease which involves the immune system mistakingly attacking myelin. Almost all licensed treatments (excluding Glatiramer Acetate) work by manipulating or suppressing the immune system. Lemtrada utilises this principle, albeit to a stronger degree.
MS is renowned for being unpredictable and unique to each individual. Consequently, what treatment option is suitable for one person may not be for another. Many elect to forgo all treatment and deal with consequences as they arise. Others prefer a more conservative approach using treatments that have a longer term safety profile. Then there are individuals like myself who are prepared to take on greater risk, but with potential greater reward.
Such a wide spectrum of disease severity also produces a huge variation in opinions in terms of treatment approaches even amongst neurologists. But since no one could tell me my prognosis, I felt it only fair that I have a say in what treatment I undertake. My neurologist guided and helped educate me on my options and ensured that I was fully aware of all risks associated with treatment.
I strongly believe that we are our own best advocate. No one is as invested in our own health as much as we are. Knowledge is power. Do as much research as you can and if you can’t, surround yourself with people who care as much about your health and your treatment as you do.