Last reply 2 months ago
Plegridy: False Horror Stories.

Diagnosed in 2019, I’ve now been on plegridy for close to 3 months and although I’ve had some side effects they were nothing in comparison to the horror stories I read online.

The 1st time I felt like I had been beaten up, and at one point I had some problems with breathlessness but that’s it. When I self inject, its very simple and there’s never anything more than site reactions (which don’t hurt at all) or at worst a small bit of blood if I screw up where the needle hits. It’s a lot less interesting, writing about something that isn’t a horror story but when I was looking for reviews of plegridy before it would have helped me to have someone say that it can be fine.

Because it can be fine, it has become just another thing I take and all anxiety of self injection has passed, the actual process of administration is incredibly easy and tbh getting on, getting used to and then maintaining the dosing has had little to no impact on the way I live my life.

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2 months ago

@wheelrunconflux , Dr. Google isn’t very beneficial to us, are they?

You’re right, there is a lack of good reports. Unfortunately, that is human nature. 99 out of 100 will shout about a bad experience, whilst 1 out of 100 relates a good experience.

So, thanks for being in that 1%.

I suppose that being presently undiagnosed, you are fortunate to be prescribed a Disease Modifying Therapy (DMT). Not many Neuros are that proactive in cases of CIS.

So keep on, keeping on.

2 months ago

Thanks for that. I need to decide whether to accept the offer of Plegridy or Copaxone. Your post is the first thing I’ve come across that hasn’t put me off one or other of them.

2 months ago

Very true that one bad experience/apple is likely to be reported and found when googling rather than the 100 or 1000 that were fine. I self-injected Copaxone for 11 years and Rebif for 4. I had irritating site reactions to them that were annoying is all. I did develop some dimpling and bumps over all those years to Copaxone but I am not a bikini model ;-0 so they didn’t bother me. The lesions mounting in my brain was more concerning!

There were like 3 times within 10 seconds of injecting Copaxone I had a tight compression around my chest that I just “breathed through” while leaning on my vanity in the bathroom. These passed and I went in to bed…no further issue.

In hundreds of injections they didn’t concern me too much. I moved to Ocrevus as it is just more effective. Go in twice a year for a monitored infusion. I think that is an advantage as well. I don’t need to think about “is it an injection day” or not.

2 months ago

I just switched to Plegridy a few months ago because I was unable to self administer Avonex anymore and they are similar medications. My flu symptoms aren’t as bad, my injection sites do get very red and itchy but otherwise I am far happier. I feel like I got a little independence back after having to rely on my mother or sister to inject me every week. I was told by the nurse that I would feel the side effects for longer and I actually feel like they don’t last as long as Avonex did!

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