Hep C Discussion Forum

Just wanted to post my further experience with statins and a warning about Repatha. I can't tolerate any of the common oral statins due to fatigue and also muscle pain, my cardiologist tried me on four. Well, he encouraged me to try Repatha and he did manage to get Medicare to cover it since I could not take the usual oral statins, I appreciate the effort he took for that.

Over the course of two months I took 5 doses of Repatha injecting myself with the autoinjector, every two weeks. First injection put me in bed for two days with severe chills and shaking. Just my body getting used to a potent PCSK9 inhibitor doctor said. Second and third injections no problem. However, on the fourth injection within two hours of the injection I had the flu like symptoms coming back, but only lasted a day. Starting to worry about whether Repatha could be damaging my body.

I gave it one more try and on the fifth injection it put me in bed for two days like the first injection did. At that point I decided to stop the Repatha. I was not going to risk another dose. I was concerned about permanent damage. This med literally sucks the cholesterol out of your body and those of us who already have damage to our livers may not be able to tolerate it.

I see my cardiologist again in a couple of weeks and will go over everything with him. In the past 6 months I have lost twenty pounds and still have another 15 to go to get back to my ideal weight. I did it by limiting my calorie intake and regular exercise as much as my arthritis can tolerate. If you do a search on Repatha side effects there is some concern that it actually reduces cholesterol too much and can cause memory loss especially for those over 65. I think the jury is out on it but I don't want to be a guinea pig and there are some patients who have been permanently damaged by taking Repatha. I sure don't want to be one of them!

Hey thanks for reminding me about your kPa's, as well as laying out what your chol.panel was (both of these being "pre-treatment" stats).

I think your chol panel is not too bad, not horribly out of wack, if i interpret these things correctly. You, I am sure, have probably already sussed all this out with your doc, but (just speaking for myself) I am personally relieved to see that these chol levels are not higher/more out of wack. 

The books say we should strive for a normal (or low risk "ratio") of about 4 to 1, yours, at 5.2 to 1, isn't that bad.

The formula (to figure "ratio" out) is to take your "total chol." and divide by your "HDL". In your case (just for comparison purposes) ... say your "total chol." had been 200 (instead of 223) and your HDL had been 50 (instead of 43), then your ratio would have worked out to 4 to 1 - a good ratio, so your ratio of 5.2 to 1 is not that bad.

You have to go by what your docs think of course, they know best, they know what is risky for you, and what all your other contributing parameters are that can increase cardiovascular risk for you. But me, as a know-nothing novice just looking at your lab values alone, in isolation, i don't think your chols are crazy out of wack, and, they might just be better than a lot of other North Americans!  

You and your doc have done really well, to have attempted two trials of statins. I wonder what your lipids are doing now (compared to your pre-Epclusa lipids) - it will not be long now before you are arriving at SVR24 - 6 months from your EOT in May, SVR 24 would be at the end of Nov? So, if you are going to have LFT's and VL done for SVR24 anyway, then ... why not do a lipid panel again as well, AND maybe have another fibroscan done then too - maybe things are looking better than you think, or, at least you will know things are similar or stable. Just a thought. I am assuming you have not had another chol panel done since the pre-treatment one in Jan 2018? It would be a bonus if you already got a lower kPa in your fibroscan in Nov! Good you have had multiple CT sessions, they can see lots from those. I wonder ... if it is a truth that a fatty liver can bump up the kPa's a bit, then i wonder if a big ole hard rock in your GB could also influence the kPa's of a fibroscan! Not likely - you'd think the angle of fibroscan through the liver misses completely being anywhere near the GB. Oh dear my mind is wandering off ...!

You can check out chol hx in my bio if you want.

It's really good you and your cardiologist are tracking everything that needs to be dealt with on you, given your hx and health circumstances. C.   

lamassu,

Of course your F3 was determined by fibroscan - it's right in your sig line for heavens sake! I'm asleep at the wheel, and I was just too tired and lazy to be bothered to look for the info further into your threads, as i did recall us discussing fibroscans before, but just not every detail - but hey, it would help  a lot if i would just read your sig line eh?!

So ya, you and me were not that far apart on pre-treatment Fscores yours being 12.4 (F3) and mine 12.6 (F4), my doc never wished to scope me for varices before, during or after my Vosevi trial. Even in the second subsequent "follow-up trial" I got into (after cure) that was deemed/designed to follow cirrhotic-type people - even there they warned I might have to have an initial scope, but then ... they elected not to do one - they just depending on all other labs and imagings and signs and symptoms. I have to admit i was relieved not to have to be subjected to a scoping, just one less thing - funny i was more just concerned regarding my basic liver damage/function/steatosis//liver stiffness (and subsequent imaging of pancreatic calcifications and other calcifications and funny transient bits here and there, lymph nodes, granulomas, those things I dwelled on and followed way more than I was ever worried about having varices for some reason. I laboured over everything why not varices eh? Dunno why.

Me too, I am so glad how that profound fatigue broke up for you toward EOT, and how you have gleaned some good feeling tangible gains since then - really good! 

Good for you that you had 2 goes at 2 rounds of statins too, never say never, where there is a will there is a way to improve those lipids eventually, somehow, one way or another ... how radical are your lipids anywho?

Everyone is dif, but look how quick my kPa's and liver stiffness reversed after cure! It could be reversing just as quick for you too, as we speak! C.

Thanks Cheddy, I'll update after I see my cardiologist. I continue to marvel at how good I feel now that the HCV is cured. It is a new lease on life for me. Sure I am living with an F3 liver but I will get another FibroScan next June and see if there has been any improvement in my kPa score.

Canuck:

F3 was by FibroScan. My twofer procedure was originally scheduled for end of August because my liver doc did think it important to check for varices due to my 12.4 kPa. Rescheduled due to conflicts on my end. My BP is normal and CT scan of liver was unremarkable except for the gallstone. I was surprised how wiped out I felt from the propofol having had it previously for cardioversions (paroxysmal atrial fibrillation.) Took me a good day to sleep it off.

Hoodietree:

Per my cardiologist I have now tried both Crestor and Lipitor and both induced fatigue after one week of use. I went back to normal in about a week after discontinuing both. I'll have another chat with my cardiologist when I see him next month but we are running out of statins to try. After living with HCV induced fatigue for many years I sure as shootin' will not take any med that makes me feel tired again no way no how.

Hey lamassu,

Further to your post to 5 tonight about GB's and GB stones, what's this about you being surprised that you DON'T have esophageal varices? Why did you think you might have varices? Was it a question your doc was real big on and suspicious of prior to treatment? Something you two discussed prior? If he had a high level of suspicion, they usually do check these things out right away (pre-treatment or most likely quite soon after their suspicion) if they feel strongly that you were "looking" that way. Remind me again about blood pressure issues with you, and/or what methods they used to come up with your F3 scoring, and if your CAT imaging showed things of note aside from sporting a 2.2 karot GB pearl. 

I am happy your doc felt he could and should do both ends of you. And, me too, I think it's lovely, NO varices! I'm glad you got the 2 fer 1 - that IS a good and thrifty idea - we did the same for my partner (both ends, one drug, one table, one date). Glad they nipped a couple polyps for ya, kinda at least makes the prep trouble all worth it, aside from them just having wandering looki-loos. I am so glad people know how to take good care of themselves and know how to get good care for themselves - half the battle! I can relax knowing you will make sure to get good following. 

I am so happy and relieved for you lamassu that you are feeling so much better (than you were!), that was a long hard haul for you there for a while! I hope to see you continuing to feel better and better, day by day.  : )  C.

Hi Canuck,

I am feeling fine now thanks after stopping the Crestor. Due to the side effects I had from Epclusa I got very little exercise during the three months of treatment so stamina is low but improving as I walk as much daily as my osteoarthritis can handle. I have been told to expect a right knee replacement sometime in the next few years. When is up to me but I am going to postpone as long as possible.

Right now I can manage the osteo discomfort with a low dose of tramadol daily. The three months on Epclusa was not easy for me (heavy fatigue) so I have zero interest in any invasive procedures this year and certainly not until I see SVR at EOT plus 6 months.

I don't have the labs you asked for. I was finally fatigue free at EOT so was alarmed that after only less than two weeks on Crestor fatigue was returning which prompted a literature search that showed me significant side effects from statins are more common than I expected. I'll discuss with my cardiologist next visit.

I’m sorry you experienced issues with a statin, but I know many, many people that do without difficulty. I would hesitate giving the warning about statins and all DAA’s however. There are several medications that are hard on our livers and caution is advised when using any of them. Better to discuss the addition of any drug regimen during or after significant liver disease with the prescribing physician. I’m glad you’re feeling better.