Treatment Part 4 – A Bump in the Road

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Posted By Scott

Last time I documented the progress through 2019 and the year after my first Lemtrada treatment.  Before I would get to the second round, there was an unexpected bump in the road.


On 12th April 2019, the European Medicines Agency announced that use of Lemtrada was being put on hold whilst it’s safety was investigated.

This was following new reports of immune-mediated conditions and problems with the heart and blood vessels with the medicine, including fatal cases. In some cases, patients had suffered strokes during or shortly after the infusions.

Naturally this was worrying.  Was I in danger?  Would I actually get the second treatment?  If I did not, was the single treatment going to be effective?  I felt I was in limbo.

It is understandable that the EMA takes a cautious note in such cases but my analytical side could have done with some more details.  Was it one incident out of 10 patients or one out of 100,000?  What physical condition were people in.  I needed that context to help me understand the situation.

I spoke to my MS Nurse and my Neurologist and both assured me that the treatment would go ahead. The local experience at the QEUH was that they had not had any problems with patients receiving treatment. That was reassuring.

Carry On…

On 14th November it was announced that the ongoing use of Lemtrada would be restricted.  However as I had started the treatment, I would get the second one.  This was a relief, although it did add a touch of apprehension about the process.

Lemtrada would not longer be a first line treatment.  Had I not already had the first round, I would not get Lemtrada but instead a different drug.  Lemtrada would only be prescribed if I suffered relapses whilst on another treatment.

After six months of uncertainty around Lemtrada, the second round was confirmed and would take place exactly one year after the first.  I tried to put any concerns out of my head and looked forward to the treatment…

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