Chris is 32 years old and has relapsing-remitting multiple sclerosis (MS). He lives in Cornwall with his wife and their young child. He started alemtuzumab in 2015, with a second round in 2016 – but following a relapse in 2017, he was faced with a choice of either a third round, or a request to be referred to the haemopoietic stem cell transplant (HSCT) treatment trial in London.
Comments from the Academy’s Dr David Paling are at the end of the article.
Alemtuzumab first suggested
Coming into alemtuzumab in 2015, I was extremely hopeful that it could halt disease progression for a number of years. My previous disease modifying drugs (DMDs) (interferon beta-1a: Avonex and Rebif) were about 30% effective at reducing relapses, and I’d been told by my neurologist how effective alemtuzumab could be (he had been part of one of the early trials). He suggested it could be more like 80% relapse reduction over five years.
The neuro talked me through the treatment and gave some information about how it worked to slow progression. My understanding was that it basically involved using chemotherapy to target/eradicate a part of my immune system which is believed to be most active in causing MS relapses. I was led to believe that is was the last-line treatment, with no additional options thereafter. The first round would be five days (three with steroids, two without) and then a subsequent round the next year of three days (with steroids).
My MS nurse then went through the practicalities of the treatment (additional medications that I’d be taking, such as steroids, Aciclovir and Piriton) and why. She also discussed the dietary requirements/changes that I’d need to follow for several months after the treatment. The dietary changes were no problem, but were a little more difficult to follow around Christmas time.
The infusion itself wasn’t all that bad. It just involved having a cannula fitted, then sitting in a big comfy chair all day. I’d expected ‘chemotherapy’ to hit me hard, almost immediately. But I wasn’t prepared for the effects of the other medications – the Piriton (which was given first thing) made me extremely drowsy, and I needed to nap (this was disappointing, as I’d been hoping to get some work done). The steroids were then given, and gave a kind of jittery energy in the afternoon – it was like having had too much coffee.
The alemtuzumab was then prepared. Strangely, it required additional packaging (bright pink so as to prevent light from reaching the bag).
Arriving home, I hadn’t expected to feel quite so drained. And although I had no trouble getting to sleep, it was very disturbed and I was awake by 5am – I think this is all due to the steroids.
I came out in hives after the third day, which no one had warned me about. They started in my upper body, but spread very quickly. They were quite hot and blotchy. I used calamine lotion in an attempt to stop scratching them. They subsided in three to four days after the treatment was finished. I felt quite heavily fatigued for about a week after the treatment, but with a young chuld, I had to just power through – and returned to work after two weeks.
Post round one
Following round one in November 2015, my MS had been fairly stable and inactive. Although there had been continued low level, underlying symptoms – leg co-ordination, poor memory etc – that would occasionally become slightly more resurgent (generally when tired, or stressed), on the whole there had been no significant spikes or new symptoms. So I had my second round of alemtuzumab, as scheduled, in November 2016.
The relapse began in June 2017. It started with a strange sensation in my legs for a few days, but this developed into quite significant weakness and tightness (walking and stairs felt like I’d run a marathon). I also became quite numb from my waist down – with increasing severity as it approached my feet. I waited for a while before contacting my MS nurse – I knew the wider statistics of alemtuzumab, so was hopeful that it was actually just a low-level spike in symptoms.
I had an MRI, and when meeting with the neurologist, he confirmed that there were nine new lesions across my brain and spine. He didn’t say how severe/minor these lesions were, or give context alongside my previous relapses (although I didn’t think to ask this until after the appointment).
The relapse lasted around three months, and affected my mobility more than any other relapse previously. Work was also more difficult in certain areas (as well as teaching, I’m also a wedding videographer), particularly moving and stably operating a video camera. Aside from my wife, I don’t think anyone else would have known. By the time the relapse ended, I’d seen both the MS nurse and my neuro. It was agreed that I would have a third round of alemtuzumab. No other treatments were talked about or suggested.
Alemtuzumab or HSCT
My wife is an intensive care nurse, and has a rigorous approach to research – she interprets previous studies and relays the information to me in a way I can understand. She found two research trials for HSCT and began to discuss it with me as something I should ask my MS nurse about. Based on her research, I was eligible to take part in the trial – with one of the principle criteria being a breakthrough relapse following alemtuzumab.
My neuro agreed that I would be eligible and said he would make a referral, if I wanted. At the time of the meeting, I had decided that I wanted to take the most proactive, aggressive treatment path.
But in the following days, as my wife explained more about it (frequent trips to London, a long stay in isolation at a hospital in London, increased severity of the chemo) – I changed my mind. Aside from the disruption to my life, I wanted to give alemtuzumab another chance to work, and most importantly, I wanted to keep the HSCT as a potential final treatment option if I should relapse again.
I contacted my neuro and informed him that I’d rather try a third round of alemtuzumab, which he began to process. I was booked in for November, but had to postpone after a bout of shingles.
I continue to be impressed with how the MS team work in Cornwall. They have been quick to respond to emails/contact, and action anything discussed. Shortly after the appointment with my MS nurse following the relapse, she went off on long-term sick leave. I was a little concerned that, as my point of contact, things would slow down. But also, I felt I had a good relationship with the nurse, and she’d been very supportive over the last seven years – I very much hoped she was okay, and would be back soon.
A cover nurse was put into place extremely quickly, and she reached out to make contact immediately. She explained her other/usual background (progressive MS) and was very nice.
I do wish that one of the MS nurses, or my neuro, had talked to me about HSCT before, especially given as I would actually be eligible. It had been mentioned in passing, but only as part of a passing discussion about it having been on TV – no one had remotely suggested it as an option, or what the risks/benefits might be. I understand why they don’t – as a shiny new thing, it might offer false hope to a lot of patients – but I would have preferred not to have relied on my wife to find it.
Comments from Dr David Paling
I am really sorry to hear about the problems that Chris has been having, and I am very grateful to him for writing an excellent article which highlights some of the really difficult decisions that people with MS and their treating team have to make.
It is very disappointing to hear that Chris had a relapse so soon after his treatment, but just under half of people who are treated with alemtuzumab do need further courses after the first two for relapses or new lesions on the brain scan.
Autologous haemopoetic stem cell treatment (AHSCT) is a very promising treatment for multiple sclerosis, however as Chris points out it is a big undertaking. It involves coming in to hospital and having very high doses of chemotherapy to attempt to remove all the cells of the immune system. The immune system is then rebooted from new using stem cells that have been taken from the blood beforehand. Whilst the stem cells are getting to work, people under treatment remain at very high risk of infection, and have to be kept in isolation in hospital. Whilst centres that specialise in treatment are getting better and better, there still is a risk of death during the treatment.
We currently don’t know whether this treatment is better than alemtuzumab or other disease modifying therapies, and far fewer people have been treated using AHSCT. A few trials are planned and in progress to help understand this.
The MIST trial which has now fully recruited, and is ongoing hopes to answer whether AHSCT is better than other effective disease modifying therapies (although not to alemtuzumab). This is a joint international effort with centres in Sheffield UK, San Paulo Brazil, Uppsala in Sweden and lead by a centre in Chicago, USA. Preliminary results are expected this year, but the full results are not expected until 2019.
Centres in London and Sheffield are working to try and answer Chris’s specific question, by comparing AHSCT to alemtuzumab. At the moment a grant is being prepared to fund this trial.
I hope that these trials may give us further information that would help people like Chris and his treating team make the best informed decisions about their treatment.
Dr David Paling is Consultant Neurologist at the Royal Hallamshire Hospital, Sheffield. To read his full profile click here
Posted in: Patient's experience