This is the AAN poster of the long term follow up of the alemtuzumab phase II trial
So what does it say
Of the 106 who started about 90% completed 3 years follow up and most of those that entered the 10 year follow up remained however that was only 60 people. Did the others have a bad resut or were they so happy that they forgot they had MS and didn’t want to be reminded of this?
In those that were followed up a third never had more than the first set of injections about 45% had a third injection only
The annualised relapse rate was maintained at 0.1 across the ten years.
In the majority of people the EDSS improved or stabilised but at ten year the EDSS improvement was about 0.1 better. Now if you were not on drug I expect that the EDSS would decline however,
it says to me do not accumulate damage before you start.
It says that the EDSS generally stabilises. So this says to me the damage is done and the natural repair mechanisms are not really that active by stopping inflammatory disease.
Thus athough there is some improvement, this is rather limited. This is what we see in the beasties, you stop more deficit but it dooes not turn back the clock.
Therefore the damage you accumulate whilst deciding about whether to risk the big guns type of treatment i.e. highly effective treatments, is there to stay, so best to start treatment early.
I think this is a postive result.
However ,what they partly airbrush away, is the side effect issue.
They say it is the same as already reported in other similar studies without telling us the real story or showing the real data. What are they hiding?
They are not really hiding, but likewise they are not bringing the problem to the readers attention either. This is par for the course.
They say thyroid problems peak at three years but do they stop?
We are not told. In the CARE-I/II data at the AAN the thyroid problem was over 40% at 5 years so it must have gone up.
They say that serious adverse thyroid events occurred in less than 4% of patients each year , so more thyroid issues must be occuring past 5 years.. Does this mean 4% x 10 years so 40% of patients had serious thyriod problems or do they mean of those that have thyroid problems 4% were a problem requiring surgery etc. I think it is the latter
We will see when it is published but what will be missing from the publication, the bad news I wonder?
Maybe if they could write papers with small print it would be there but some of this is so fine you can’t see it they must have those bits printed in white so you can’t see them:-).
COI: I have received research grant in the past from the makers of Alemtuzmab