Woman of 40 with MS died of cardiac arrest after a Copaxone shot--over 2 years ago

[agate]

I just found out about a death that occurred in 2022. Even though I keep a weather-eye on news about MS drugs, especially glatiramer acetate (Copaxone, Glatopa) because that's the one I've had the most experience with, I didn't find out about this death until over two years later.

She was only 40 years old and suffered what is thought to be anaphylactic shock shortly after doing a routine Copaxone injection. She died of cardiac arrest. The news stories I found do not mention the dreaded "immediate post-injection reaction" (IPIR) that some people have shortly after a Copaxone shot (I had a very slight one once and have read of many more severe ones) but it sounds as if this woman may have had one of those--and died.

The drug companies always said that those IPIRs were no big deal, nothing to worry about--and patients were advised to wait it out, maybe for half an hour, and it would go away. They just about guaranteed that the IPIR was harmless even though they admitted that they weren't sure why it was happening. They would say that it was "like an allergic reaction" but couldn't possibly be one.

Here is one of the stories, from Mayo Clinic (June 18, 2024):

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The IPIR always was a concern of mine. As someone living alone, I wondered what would happen if I had a severe IPIR. I have read some accounts by people for whom that reaction was severe enough for them to land in an ER.

Yes, Copaxone is one of the safest MS drugs, and this was probably just a weird case that is so rare that it might never happen again. Still, I'm glad that it was OK with the neuro when I decided to stop taking it.

[Virginia]

Agate I had a reaction so bad it lasted all day. It was immediately after giving the shot. I had shortness of breath and knew what was happening. I stumbled a few steps to my bed, when that subsided I then took a bad headache and then got sick on my stomach. When I told my neurologist he told me he believed me that he had seen it happen. The shots were being given everyday back then and I had been giving them for about 5 months with no problem.

[agate]

Virginia, I'd forgotten that you tried Copaxone. I was on it back when there were the daily shots too and never had that IPIR with them, but with the 3-times-a-week type I did have a very slight reaction like that--a few minutes of faintness and nausea.

Did you stop Copaxone after you had that reaction?

I'm not trying to turn people off of the MS drugs. I think they're working even if the effects aren't dramatic. But sometimes people just take whatever medicine a doctor wants them to be on without looking into what the risks are. With any drug there are some risks, and even the safest MS drugs have some risks. I wish I knew more about this case because that IPIR has been a question I've had for years: If it isn't an allergic reaction but is "like" one, then what is it? And

[agate]

Here's another story about her, from Midwest Radio (June 18, 2024):

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If this case was ever written up in medical journals at the time or up to now, I certainly missed it though I subscribe to several information services that supply material as it comes along. You have to wonder if there are ways of seeing to it that some stories just don't get out to people.

In fairness to the medical community, though, apparently they are pretty sure that this was such an unusual occurrence that there would be no point in alarming people needlessly.


Still, it's an interesting example of just how risky it is to take anything and how cautious we should be.

[Virginia]

Back then, if you remember, we were told that Copaxone was one of the safer drugs. I stayed on it for about a month after that happened. If I remember correctly I think the shortness of breath lasted about an hour, then the headache and nausea started. I remember being sick enough to stay in bed all day.

This was still not the reason I stopped it and started Rebif. I stopped Copaxone because I was getting steadily worse on it. I had been on Avonex for a year before that, but that was in the days when they gave it just once a week and you had to use a big long needle. I was one of the first persons in the U.S. to go on Rebif.

[agate]

Copaxone is still regarded as one of the safest MS drugs. Congratulations on sticking with it in spite of that "adverse event," Virginia. That is real determination.

I remember Avonex with the long needles. When I passed out and fell, alone in the bathroom one night a couple of hours after an Avonex shot, I decided to stop taking it. I'm not sure it caused that but it did seem as if it might have. I had been on Avonex for 3 years. Three years seems to be my limit on those MS drugs--3 of them had to be stopped at the 3-year point because of side effects.

I wasn't very adept with the Avonex needles though. During the last year on it, a nurse came to do the shot for me. This was an inconvenience as I always had to be wearing something appropriate and wait for her at the scheduled time but she was very nice.

The first people to go on any of the MS drugs were really taking a big risk, weren't they? Wimps like me waited until years had gone by before we'd go near any of them. That is so impressive, Virginia, that you were among the first people in the US to start on Rebif.