As I write this, I am suffering horribly from PCSK9 inhibitor poisoning. 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.
I have been housebound for 3 months due to SEVERE PAIN. I may also be showing signs of an atypical allergic reaction to PCSK9 inhibitors (sold under brand names praluent and repatha). I suspect 1st gen PCSK9 inhibitors will be pulled from the market about the day their patents expire and Gen 2 becomes available.
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. Pharma is inherently dishonest, describing benefits as relative risks (typically magnifying the benefit by a factor of 10x) while describing harms in absolute terms. This means a 20% “benefit” means 2% of the study group benefited. Meanwhile, harms are listed as 2% experienced side effects – mentally, you compare the 2% to the 20% even though they measure different things.
My new PA agrees that praluent may be a cause of this SEVERE PAIN. I will be in touch with her this week. I took my last dose on March 7th and will be throwing out the $700 (out of pocket) remaining doses, never to touch this again.
I asked my cardiologist about this in December he said “I’ve never had a patient that had this problem on praluent” – my response should haven been “But now you do!”
It will take an estimated 3+ months to recover from the damage – while some take much longer to recover.
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 with non-pitting edema. Normally, if you have fluid build up, due to gravity, the swelling goes to the bottom or sides of the feet, not on the top. It would also be pitting edema. This seems to be an atypical allergic reaction causing angioedema. I’ve been through this before with the discovery of food allergies – which led to swelling just like this. But food cleared out of my body within hours and the reaction would stop – unlike praluent which can take months to clear out of the system. Thus, I now have continuous swollen areas on the top of my feet.
About this time, the pain became far 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 – each describing the pain and side effects they have 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 and life destroying.
Unfortunately, cardiology is so excited about the dramatic LDL reductions on PCSK9 inhibitors that they seem to ignore the real problems many patients have. For a long time, they ignored muscle and joint pains from statin usage – saying the pains were “in your head”. Eventually, some studies showed the pains were real.
I had been started on atorvastatin but about 5 weeks later, developed really 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. There is not much difference in LDL lowering at 80mg, 40mg or 20mg of atorvastatin. Similarly, while 5 to 10 mg is a typical dose for rosuvastatin, many achieve good results at 2.5 mg, or even 2.5 mg taken 2 to 3x/week instead of daily. Something to think about.
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.
