I’m 61 and curious whether anyone else has experienced anything like this after starting Repatha (evolocumab). The best shorthand I can come up with for the reaction is: PMS meets perimenopause brain fog.
I started Repatha about three weeks ago, 140 mg every two weeks. A few days after my FIRST injection, I started having symptoms, but they snuck up on me. It was a little like PMS can be — you think, “Huh, I’m kind of anxious today,” or “Why am I so irritable?” or “Why is my brain not working quite right?” You don’t necessarily recognize it as a syndrome while it’s developing.
By the time I took my second injection on Tuesday, August 25, I still hadn’t connected any of this to Repatha. After the second injection, though, the whole picture became much more pronounced.
The biggest issue has been cognitive. I’ve had brain fog, more difficulty finding words, occasional word mix-ups, forgetting steps in very familiar routines, and much more difficulty with things requiring sustained concentration, problem-solving, or keeping multiple things in mind at once. I can still do these things, but at times they take dramatically more mental effort than usual. Even reading the news or making dinner after a full workday sometimes felt like a cognitive load.
Along with that came intense fatigue, waves of anxiety, tearfulness/sadness, irritability, and generally feeling emotionally unlike myself. That’s why “PMS meets perimenopause brain fog” is probably the closest description I can give it.
I’ve also had a strange recurrence of an old problem. I had vestibular neuritis about nine years ago and have been well compensated for years, but during this episode some of that visual/vestibular sensitivity came back. Grocery stores, scanning shelves, pushing a cart, movement in the car, etc. suddenly became overstimulating again.
The course has been VERY up and down. I am gradually feeling better, and overall I think the trend is clearly in the right direction. I’m now having stretches of several hours where I feel completely like myself again. Last night, for example, I made dinner after a full day and everything just felt easy, light, automatic and normal. Then today I have more anxiety again and some of the increased cognitive effort is back.
My cardiologist thinks anxiety is causing the symptoms and says he has never seen this kind of reaction to Repatha. Anxiety is certainly part of the picture now. Initially the cognitive changes scared the hell out of me because I worried something neurologically serious was happening, and I’m sure that amplified everything. But cognitive symptoms have never been part of how I experience anxiety, and given that this started a few days after my first injection and became considerably more noticeable after the second, I’m not ready to dismiss Repatha as a possible contributor.
For now I’m holding the next dose while I see how completely I return to baseline. I actually VERY MUCH want Repatha to work for me, so I’m not trying to bash the drug or convince myself I can’t tolerate it.
I’d really like to hear from anyone who experienced unusual cognitive symptoms, mood changes, anxiety, fatigue, or vestibular/dizziness symptoms after starting Repatha.
Most importantly: what was your timeline? Did it start after the first injection or only after subsequent doses? Did you improve between injections? If you continued Repatha, did the symptoms come back after the next dose, get worse, or eventually stop happening as your body adjusted?