Anyone use Praluent or Repatha?


#1

My endo is trying to get my insurance company to approve a prescription for the PCSK9 inhibitor, Praluent to lower my cholesterol. Not because my cholesterol is particularly high, but because I have a strong family history of adverse affects from statins and have already demonstrated my inability to take Zetia.

My doc gave me a month’s supply (two injections) worth of samples. These are the SCARIEST injections I’ve had to give myself – and not even because I’m already somewhat “needle-phobic!” I managed to take one injection, so far (next one in two weeks), but am wondering what, if any, experience folk have with this medication?


#2

Took injection #2 Thursday night… Still SCARY, but no sensitivity afterward this time. So far, no obvious side effects. I’ve taken both injections in my stomach - which I usually do not like for injections… Endo’s gonig to order labs (if he hasn’t already) that I should take in the next 2-3 weeks to see the results if any…

Meanwhile, still waiting to see if Express Scripts will approve and ship a regular order or not.

Am I the only one around here taking this relatively new med??


#3

I had big trouble with Pravastatin. I took it for more than 5 years and had two obvious issues. The first one was leg weakness (hard to stand up from a kneeling position, or climb steps).
The second issue started after about 5 years. My AST and ALT numbers began climbing and climbing. I went off of it for 3 weeks, took a blood test and numbers were normal. Went back on it as a test, and numbers went way up. Got off it again and numbers went back down within 3 weeks. that’s when I quit it altogether.

My doc wanted me on a statin, I resisted, but he mentioned that Simvistatin is a different class of statin, so I tried it. SO far, I’ve been on it for many years with no leg issues or elevated liver blood test results.


#4

Well, in my case, I have the known genetic defect that puts me at risk for myopathy from Simvastatin. As it turns out, as part of his “campaign” to get approval for Praluent, my endo also prescribed Pravastatin for me – in a “baby” dose of 5mg (as opposed to the 40mg/day normal dosage). This way, he can claim that I at least tried a “mild” statin and proved intolerant.

He said that he’d like me to take it once per week. So far, I’ve tried it twice (2 weeks apart a day before the Praluent injections). My experience from the pravastatin, so far is mixed – First, it makes me feel fatigued and “feverish” - like I’m coming down with a cold. That lasts 2-3 days. On the other side, it rather dramatically improves my insulin sensitivity for the same 2-3 days - I get better fasting BGs and more easily-managed meals.

Praluent, is of course, an entirely different class of medication from all statins.


#5

UPDATE:

Got my lipids test results back from my endo’s office. This is the 4th week since I started taking Praluent injections.

Before:  Total Cholesterol:  242,  HDL 54,  LDL: 176, Trigs: 62,  Non-HDL: 188
After:   Total Cholesterol:  115,  HDL: 49, LDL: 53,  Trigs: 65,  Non-HDL: 66 

I ended up doing somewhat less exercise lately and have had a few too-high days (BG) – probably explains the drop in HDL and rise in Trigs, but still…
Looks like pretty significant change… Is it good? Is it where I should be?


#6

Hi Thas,

My Endo just prescribed Praluent for me. I see that you have been on it for a while now. Have you had any side effects, especially memory problems?

Certainly there seems to be no question as to its effectiveness in lowering cholesterol levels. I did see in the literature that it has not been proven to reduce heart attack, stroke, heart disease. So why the hell should I take it. There seems to be a number of people who have had really negative side effects too.

I would love to hear from people who have experience with either Preluent or Repatha.


#7

Ok… First, Yes, I’ve been using Praluent for. while now. I have had no noticeable side effects – and I am a person that seems to “find” side effects in many meds. I have had some injection site soreness that lasts anywhere from a few minutes to a day, but it’s not significant. I also had a bit of nasal congestion after the first couple times I took it, but that has not happened in a while now. I have seen no cognitive or memory side effects and no indication of muscular or joint pain.

As to efficacy - the drug definitely reduces LDL cholesterol. This month, I was tested and my LDL was 63 (down from 174 before taking the med). The question of long-term effectiveness in terms of outcome is still not clear. The FOURIER trial of Repatha did not indicate much in terms of overall benefits; however, the longer, and larger ODDESSY trial that was published earlier this year seems to indicate a very significant 15% reduction in CVD death and all-cause mortality - higher in the highest-risk patients. If true, I think those are good results!

Like you, I’m skeptical. I told my endo that I’ll keep taking it, so long as it doesn’t become a huge burden - especially financially. We’ll see what happens.


#8

Thanks for your feedback. Obviously you are one of those people who doesn’t blindly follow what the white-coat people tell you. It sounds as if you also research out enough info to be an informed patient. I like that; I, too, am that way.

Have you had a CAC CT Scan Score test? I had one a couple of weeks ago. It confirmed and quantified what I already know – that I do have CVD. Now I understand more about my risk factor. The hope is that by lowering my cholesterol the CVD can be reversed some. I’ll give it a year and have another CAC test.

I’m a T2 for 25 years, under really great control.


#9

I did have a Calcium Score CT scan last year - and it was mostly OK - except for one area where there was significant calcification. My end referred me to a cardiologist who did a nuclear stress test – I “passed” that with no indication of restricted blood flow. That does not preclude a future problem from the calcium deposits, though.

I’m currently diagnosed as T1, after being initially diagnosed as T2 6 year ago. I also have under very good control - my recent A1c was (again) 5.6.


#10

MK3509
I ve been taking Praluent 75 for going on 2 months and report no side effects. Im a 70 year old man and also take Crestore statin 40mg, (Rosuvastatin). At first I had side effects but they all went away. Express Scripts just sent me a letter saying that I have been approved for the injection Pens. October 10,2018.


#11

Thas,

The discussion seems to have ended last year. I ran across it yesterday, in a search
for individuals with a history of serious muscle problems, from statins,
who are now on Praluent or Repatha. How are things going with your
treatment?

Thanks.


#12

I have been using Praluent for a year. I’ve had no side effects after the first month when I had a bit of a dry cough. My total cholesterol went down from 274 to 122. LDL went from 140 to 60. Numbers have been pretty stable since.

The injection stings a bit, and there’s occasional soreness near the site for a couple hours, but nothing bad. Overall, it’s been helpful (I think) and uneventful.

Statins made me unable to even walk comfortably - thankfully, that stopped shortly after stopping them.


#13

That’s very good news.
I had very bad reactions from 3 different statins and was unable to walk well for
about 7 years. My leg is still much weaker than it should be. I also had a similar
problem with levaquin. My primary doc says it’s probably my DNA reacting to
different drugs. Since then, I’ve had 3 stents put in and the cardiologist has suggested Repatha, but I’m reluctant to try. I’ve been on a vegetarian diet for 3 years, but my
numbers are still quite a bit higher than they should be. I appreciate hearing
from you.


#14

Praluent has been pretty darn good for me. I’m sure Repatha will work similarly.


#15

I received two stents in 2010 for somewhat unknown reasons. My LDL at that time was almost 200. It had steadily climbed on a very low carb diet. I also had uncontrolled diabetes when urine testing, but for years my diabetes has been extremely well controlled. I have no other complications after 60 yrs. I also had extreme stress leading up to getting the stents. My mom who I had been taking care of had died the week before. My dad who I had been taking care of died 4 months before that. Right after he died I had kidney stones and a bit of bladder cancer. It was a very stressful time.

Anyway, since getting stents my LDL has been much lower and is now around 117. I have tried statins but can’t seem to take any of them including Zetia. Now I am trying an extremely low dose of the generic form of Crestor. Last time I tried Crestor my liver enzymes rose. I am waiting for the results of my last lipid panel and liver enzymes test.

The cardiologist wanted me to try Praluent or Repatha but I am very hesitant to try them. My last nuclear stress test was fine. I eat a low fat plant based diet and get a lot of exercise.

Is an LDL of 116 really that bad? I realize the cardiologist would like to see an LDL of 70.


#16

Marilyn, our current situations seem very similar. My LDL is now 120 and all the healthy eating & exercise I do doesn’t seem to lower it beyond that point. After my first stent, the cardiologist gave me “Eat to Live” and I dropped too much weight. My numbers were a bit lower than they are now, but nowhere near 70. My Primary says that if I have
an “event,” there may be no other choice remaining. I’ve looked
at the Amgen studies, for people with statin issues, who then took Repatha; it hasn’t pushed me to the point of trying a PCSK9. Let us know if you decide to take it.


#17

Just got my lab results. My LDL is now 94 and that is good enough for me!! From someone’s suggestion on this board, I retried Rosuvastatin at 10 mgs twice a week. My liver enzymes are not rising, my muscles are fine, and I am not fatigued. I am thrilled.