As I write this, I am suffering horribly – likely from PCSK9 inhibitor side effects. PCSK9 inhibitors are a class of drugs that cause SEVERE muscle and joint pain in many people with a side effect of dramatically lowering LDL. Hah hah.
I have been housebound for 3 months due to severe pain. I might also be showing signs of an atypical allergic reaction to PCSK9 inhibitors (sold under brand names praluent and repatha).
Read first person reviews: Repatha Reviews & Ratings – Drugs.com.
More first person commentary can be found at the Mayo Clinic web site, in other online forums, and in comments to online stories and YouTube videos about these medications.
I woke up this morning barely able to walk to the bathroom – and then, only by using a hiking pole. By mid-day I remain in significant pain.
The pains started about 3 weeks after my first praluent injection. Until then, I was walking and hiking many miles nearly every day, doing hill climbs and stair climbs.
My new PA thinks praluent may be a cause of this pain. I
I asked my cardiologist about this in December and he said “I’ve never had a patient that had a problem on praluent” – my response should haven been “But now you do!”
I will work with my PA to figure this out. If they have me go off praluent, it might take about 3 months to recover (it has a very long half life).
For those that visit this page via search for praluent or repatha – here are my symptoms
About 3 weeks after starting praluent, I developed pain in the outside of both hips. Prior to this, I was walking pain free most of the time, and if I had any pains it was mild and tolerable (I have a past hip injury and past broken bones and torn tendon injuries in my feet and left ankle – but these are mild enough I rarely notice any problems now.)
Gradually, over many weeks, the pain spread to my thigh and gluteal muscles.
In another month, I could no longer go for walks – before this I was walking many miles per day, including hills and long outdoor stairway climbs.
I began to develop pain on the outside of my lower legs just above the ankle. This would eventually become severe at times, particularly after standing for a period of time (walking/movement was not as bad as standing).
By 3 months, the top of my feet began to swell up. This might be angioedema allergic reaction (I’ve had these before). I will pass this info to my PA soon and see what she thinks of this.
About this time, the pain became worse and most of the time the past 3 months I have been unable to walk without the use of one or two hiking poles, taking just 3 inch steps. The pain at times is unbearable. The pain is also random – I might go days with pain just in front of the outer hip – and then a week with the hip pain only in the gluteal region. Standing for a period of time causes pain on the outside of the lower legs, just above the ankles.
I have read over 1,000 user comments about repatha at drugs.com, mayoclinic.com and at other online sources – with many describing pain and side effects endured using PCSK9 inhibitors. On the plus side, PCSK9 inhibitors are very effective at lowering LDL-C – but for many, the side effects are severe.
A year ago, I had been started on atorvastatin but about 5 weeks later, developed bad joint pain, and muscle pain. I was taken off that and the pains went away. Went back at half dose, and the pains returned. Was taken off that and put on rosuvastatin and Zetia (ezetimibe). With about 4 weeks, pain resumed but seemed mild and tolerable – until July 3rd, when while walking, I developed a very sharp pain in the right glute area. Four days later a PT diagnosed this as a gluteal muscle or tendon tear. On July 14th, while walking in the house, I experienced a sudden rip in the outside of my left thigh – I would have fallen if not for falling into a wall. One of the most abrupt, painful things I’d experienced. I had likely torn the ITB or the thigh muscle and for the next 5 days walking was nearly impossible. I was told to discontinue taking rosuvastatin.
Something I have since learned – very low doses can often have nearly the same benefits as the standard large doses. They might try me back on a low dose; we will see.
Exercise activities, weight loss and so on, would be very beneficial, likely more beneficial than drugs – but are impossible when crippled by medications.
I have no medical background and am a certified brain injured idiot, so please ignore any health comments here. This is just my personal experience.
