I was called to casualty to assess one of my patients with MS who was on natalizumab. She had been admitted with a temperature, confusion, seizures and a generalised skin rash. Within thirty minutes of seeing her, she went into status epilepticus and had to be sedated, intubated and admitted to ITU. Within 72 hours she was dead. At post-mortem, she had a measles pan-encephalitis. Four days before presentation she had unknowingly come into contact with a friend’s child who had measles. The friend was a staunch anti-vaxxer who believed that the measles vaccine caused autism and would corrupt her child’s immune system.
The above scenario is fictitious, but could happen, or more likely will happen sometime in the near future. This is a ‘known unknown’.
Things have a tendency to happen in threes; I experienced two today let’s hope the third remains science fiction.
(1) As I left home this morning on my daily commute to Whitechapel I finished listening to an Audm podcast “FEAR, MISINFORMATION, AND MEASLES SPREAD IN BROOKLYN” by Amanda Schaffer (Wired, 24-06-2019); scary stuff about the real impact of the anti-VAXX campaign on residents in Brooklyn, New York.
(2) I followed this by reading a review about measles in the latest NEJM (Strebel & Orenstein. Measles. N Engl J Med. 2019 Jul 25;381(4):349-357), which reminded me of medical school and my time on the medical wards in South Africa.
I then had flashbacks to my days as a neurology registrar in South Africa seeing and managing many patients with SSPE (subacute sclerosing panencephalitis) a relatively rare, but fatal, complication of measles infection.
More recently there was a fatal case of measles inclusion body encephalitis presented at our Association of British Neurologists meeting; tragically this young woman had not been vaccinated against measles.
Why is this important? We are living through a measles epidemic. The anti-VAXX campaigners have convinced enough parents over the last two decades to not vaccinate their children against measles, mumps and rubella (MMR). Once a certain proportion of the population is not immune to measles, so-called herd immunity becomes ineffective; i.e. the shield offered by a population of people immune to measles is too porous to isolate susceptible people from wild-type infection in the community. In fact, vaccination works because of herd immunity.
Another factor to consider is that unvaccinated people also get MS. If you are unvaccinated and have not been exposed to the wild virus you are now at relatively high-risk of acquiring measles as an adult. If you then decide to go onto longterm immunosuppression to treat your MS you are putting yourself at risk of serious complications from these infections, in particular measles. In addition, once you are on a longterm immunosuppressive therapy you can’t be vaccinated with the MMR vaccine as it is a live attenuated vaccine.
Measles is also a neurotropic virus and hence seeds to the brain. If you are on natalizumab and contract measles you will be in serious trouble. Natalizumab works by blocking trafficking of lymphocytes to the CNS and hence will stop your lymphocytes detecting, attacking and clearing the virus from the brain. The consequences of an unimpeded measles virus infection of the brain will be in all likelihood be lethal. This is a similar scenario to what happens with PML. Although natalizumab is being fingered here there is a risk will all of our immunosuppressive DMTs.
Because of this known unknown, I am proposing that all MSers are screened at baseline, i.e. before initiating a maintenance immunosuppressive therapy, to make sure they have immunity to MMR. If they are antibody negative they should be offered the option of receiving the MMR vaccine, or at least the individual components of the vaccine if they are still available in your country, to make sure they are immune to these viruses before they start treatment with the DMT concerned.
I sincerely hope my case scenario remains fiction and things don’t have to happen in threes.
14 years too late for me! I live in metro Detroit where we had a large outbreak this spring. I was tested and show no immunity. I fall in those weird years where the vaccine was not necessarily effective. I made sure that my family was all tested and are immune. I am now very careful and ask about vaccinations when I am with new friends. It would be interesting to know how long I would have to be off Tysabri in order to be vaccinated.
Misinformation and out right lies are scary in this day and age of immunotherapy.
There was a single component measles vaccine, but this has been discontinued. There was not the demand to support the production of a single component vaccine.
Did any one else feel as if this post could be a good House episode script?
Maybe I made a mistake posting this on the Bart-MS blog. Probably better if I had put it on Medium.
And what about this little bug:
https://uk.reuters.com/article/uk-britain-listeria/death-toll-in-uk-hospital-listeria-outbreak-rises-to-six-idUKKCN1UR4BQ
(was happy to learn from my mother this morning that I was vaccinated against MMR back in 1982)
Prof G,
I was feeling sorry for the lady until I realised it was another of your made up stories. As well as being a frustrated graphic designer you also appear to be a frustrated author. Crack MS in the next 5 years and you can spend your retirement pursuing these passions. Forget any plans of retiring back to your estate in SA as it’s like the Wild West (have you seen the murder rate in Cape Town?).
Are people meant to just ignore the measles epidemic and pretend it’s not happening? If you lost a loved one to measles, might you not ask why no one thought of this issue before? I’m glad that caring, intelligent people like Prof G are thinking about such things.
In terms of case reports it is sometime appropriate to change subtle details to protect anomamimity, sometimes you say it like it was. Just like you may wish to post as anonymous or under this name or that name depending on what you want to say…Dr Dre Malc Rubbish Rapper, Elvis, Jim Reevess etc.
The purpose of this post is to get MSologists to test their patient’s serostatus against these 3 viruses and to then offer them the vaccine before they start them on treatment.
Isn’t preventing measles infection better than having to treat the complications of the infection, which could be death?
Seen a consequence of measles twice 40yrs ago and 30yrd ago both were left severly disabled, heartbreaking. I’m age 56 had measles age 4 very poorly age 30 and remember symptoms age 10. Just some info now chair and bed ridden.
Another reason for this post is to get the wider MS community to get behind vaccination and to help public health officials combat fake news and the anti-VAXX movement. We all have a responsibility in this regard.
Professor, I’m confused. Is this a real case ou a made up story? I don’t want to ignore measles epidemic and its importance. I just want to know if it is a real case because I can mention your case when I’m under discussions with others. Thank you very much.
No it’s a hypothetical case to illustrate what will happen in the near future.
You were not supposed to feel sorry for the lady. You are supposed to understand the problem and help fix it. The world is not better because you felt sorry for someone.
What is you advice for patients already on Tysabri who had been vaccinated against MMR yet? Would they have to stop for their immune system to be reconstituted (yacks!), get vaccinated and then go back to Tysabri?
That was my question.
Most MSers have been vaccinated against the virus when they were children and should still be immune. Although the seroconversion rate in MSers is lower than the general population, which has yet to be explained.
Does not answer the question really….
Thanks for this piece… Question: For those of us with MS who were vaccinated as children – should we presume we are still immune from measles – or push for testing to prove this – especially if we are on an immune-suppressant DMT? I ask this because in 2015, a young American woman died of complications from measles (despite being vaccinated as a child). She had the autoimmune disorder dermatomyositis – and was on an immune suppressent drug.
https://www.theguardian.com/society/2019/jul/10/vaccines-measles-outbreak-immune-system
Up until now, I have naively presumed I was safe…
There are a large group of Americans born between 1962-1967 in which we had only one dose and the vaccine was not a combined shot. I had perfect immunity to German measles but not rubella. I agree about being tested before you begin any DMT. But there are lots of us already on these meds. We too should have our titres drawn and at least be aware.
Had the mispleasure of doing work for Mr Wakefield (author of the MMR story) when I was a bright-eyed, bushy tailed post-doc on his theory of MS. It was 24 h a day experiment for a few weeks. It did nothing but 5 minutesof reading would have said why had I been told the story. An armchair scientist…happy to spout stuff but too lazy to do the work properly… After this experience I said I never wanted to see him again. Sadly it was in the news as this story hit the news.
Gift of the gab I guess
I didn’t realise Andrew Hatfield’s theory extended to MS. I thought the bullsh*t concerned Autism….?
Andrew Wakefield even….
Just as well the MS idea was found to be bullshit, otherwise where would we be? Oh by the way his idea was all about blocked veins, you could have had CCSVI fifteen years earlier:-(. So the Bard was not Zamboni but Wakefield.
Seens he went from MS to Autism.
If you look hard enough, you’ll find spurious correlations everywhere. I for one am convinced that my decision to have dreadlocks in my teens has resulted in baldness in my late 30s. It’s gotta be that right? Genetics be damned. Maybe Andrew Wakefield would like to start the anti-dread movement. Think of all the baldness he could eradicate.
Nice one 🙂
Congratulations for this issue, I have been scared because in my country, Brazil, it’s happening the same behavior people changed a lot
Best wish