I was on Repatha for about 3.5 years with almost no problem except for some mild gastro issues in the beginning which resolved. It lowered my lipid numbers dramatically but my coronary calcium score climbed significantly. However at the 3.5 year mark I contracted bacterial pneumonia which was successfully treated. The problem was that it came back..repeatedly! In fact over the next 1.5 years I had five recurrences. It was only at round 4 that it occurred to me that the Repatha could be the source of the problem so I stopped it in mid-july of this year. I seem to be finally recovering.
Repatha also seems to have increased my blood pressure which has always been historically low with me. Thankfully that is also resolving and my numbers have gone back to normal. All in all a disappointing drug for me especially since my plaque score kept increasing even though my ldl got to 70 or below.
@fmulhare Is your doctor aware that you have stopped the Repatha? When you say your calcium score and blood pressure have increased, are they beyond normal ranges now?
If you are having competing issues with blood pressure, calcium scores and repeated infections, perhaps a cardiologist can do some more exploration to uncover the cause.
fmulhare, I didn't realize that plaque score increase on Repatha. Your post got me; both statins and pcks9 inhibitors increase plaque scores -- they think by solidifying the fatty lipids that aren't reflected on Calc testing.
The infection risk with PCSK9s are more understood as viruses can use the increased ldl receptors as entry ways into the cells. Increased CD 8 levels allows Hep C entry into the liver.
I wonder if anyone takes Repatha without having digestive issues.
Thanks for your post.
Earlier this month after doing some research and then hoping the first Repatha injection would get me on my wat to a lower LDL, I picked up my rx and gave myself my first dose. The first week was uneventful although I noticed I was coughing more again (I have BE too). But as the second weekend approached, not only was I coughing a lot more, I was also coughing up significantly more mucous so that by Friday it was clear that I was experiencing a full blown exacerbation of BE. I checked in w my doctor and began my antibiotic rx. I also noticed I was experiencing dizziness/unbalance while hiking and thumb joints were becoming quite painful. Monday morning I suddenly found myself feeling like I was unable to catch my breath! That was scary. My oxygen level was fine and so was my BP. My Apple watch did not indicate any arrhythmia either. I immediately sat down and started my portable oxygen machine and just relaxed for a while. The sensation passed. So, I checked in w my cardiologist and said I think the Repatha and I do not agree. My cardiologist insisted my symptoms were probably due to a virus or cold but I replied that I did not feel sick in the sense of having a cold or the flu or for that matter Covid. The rx antiviotic kicked in after 48 hours and my coughing diminished but I was still coughing up mucous. So, I decided to make an appt with my pulmonologist to weigh the risks and benefits of Repatha. I certainly do not want to have these kinds of events on a continuing basis because my BE will continue to get worse, I will need to take a powerful rx each time and this time I am also taking a steroid inhaler to reduce the inflammation. Longer story short, for the last two days not just my thumbs but all my joints hurt and having had a bout with arthritis about 50 years ago, I know what that feels like and do not want this either! No fever at all.
So, just checking in. I will report these symptoms and will look for something else. Since my calcium score is in the middle for my age (81) and my Cholesterol/HDL ration is 3.6, I am hoping to try a different water based statin and maybe just aim for a total LDL under 100. We will see. I hope also that others have more luck with this medication which does appear to help.
Repatha disabled my shoulders. Quit after 2 doses. Went from 50 pushups every morning to 0. Still having issues 5 months later. Physical therapy helped a little but shoulder pain is debilitating. From 50 pushups to grinding my teeth putting on a coat and no help from docs!!!
@con123 I was really enjoying Repatha and the way it made my cholesterol come down with no joint pain. I started noticing flushing on my face. It was very hot and always really pink and felt swollen. And then around the 9th injection my reactions became a lot more irritating. I developed a very severe intense itch in my scalp on my neck and my upper back. It’s constant and actually makes me feel a bit crazy I do have to stop Repatha because my reaction is apparently an allergic sensitivity that is on the severe scale. So sad I thought I had found something that would work on high cholesterol. Sure hope it works for you and that you have no reactions.
@con123 I was really enjoying Repatha and the way it made my cholesterol come down with no joint pain. I started noticing flushing on my face. It was very hot and always really pink and felt swollen. And then around the 9th injection my reactions became a lot more irritating. I developed a very severe intense itch in my scalp on my neck and my upper back. It’s constant and actually makes me feel a bit crazy I do have to stop Repatha because my reaction is apparently an allergic sensitivity that is on the severe scale. So sad I thought I had found something that would work on high cholesterol. Sure hope it works for you and that you have no reactions.
@plumpudding I took one injection and not only had flushing, but a bad injection site reaction and cold- like symptoms. Can’t tolerate Repatha either. I’m currently trying a supplement with Bergamot and will retest lipids after the holidays. I agreed to add red yeast rice if the numbers were still too high. Dr mentioned trying Nexletol in the future but he seems ok with labeling me statin intolerant.
I want to add to my post re my decision to stop taking Repatha. I developed costochondritis meaning very sharp pain in the area where cartilage connects to my sternum. Had CT scan with contrast to rule out gall bladder, intestinal and pancreas problems as the pain was a sudden sharp tearing feeling that radiated to my shoulders. It has slowly lessened and I did nothing I know of to exascerbate it in the first place. Years ago I had an arthritis flare so it is possible I am just more sensitive to things. Hopefully others will benefit from this med. I will be closely paying attention to my diet and will try a low dose of pravastatin
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@fmulhare Is your doctor aware that you have stopped the Repatha? When you say your calcium score and blood pressure have increased, are they beyond normal ranges now?
If you are having competing issues with blood pressure, calcium scores and repeated infections, perhaps a cardiologist can do some more exploration to uncover the cause.
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Like -
Helpful -
Hug
1 Reactionfmulhare, I didn't realize that plaque score increase on Repatha. Your post got me; both statins and pcks9 inhibitors increase plaque scores -- they think by solidifying the fatty lipids that aren't reflected on Calc testing.
The infection risk with PCSK9s are more understood as viruses can use the increased ldl receptors as entry ways into the cells. Increased CD 8 levels allows Hep C entry into the liver.
I wonder if anyone takes Repatha without having digestive issues.
Thanks for your post.
-
Like -
Helpful -
Hug
1 ReactionEarlier this month after doing some research and then hoping the first Repatha injection would get me on my wat to a lower LDL, I picked up my rx and gave myself my first dose. The first week was uneventful although I noticed I was coughing more again (I have BE too). But as the second weekend approached, not only was I coughing a lot more, I was also coughing up significantly more mucous so that by Friday it was clear that I was experiencing a full blown exacerbation of BE. I checked in w my doctor and began my antibiotic rx. I also noticed I was experiencing dizziness/unbalance while hiking and thumb joints were becoming quite painful. Monday morning I suddenly found myself feeling like I was unable to catch my breath! That was scary. My oxygen level was fine and so was my BP. My Apple watch did not indicate any arrhythmia either. I immediately sat down and started my portable oxygen machine and just relaxed for a while. The sensation passed. So, I checked in w my cardiologist and said I think the Repatha and I do not agree. My cardiologist insisted my symptoms were probably due to a virus or cold but I replied that I did not feel sick in the sense of having a cold or the flu or for that matter Covid. The rx antiviotic kicked in after 48 hours and my coughing diminished but I was still coughing up mucous. So, I decided to make an appt with my pulmonologist to weigh the risks and benefits of Repatha. I certainly do not want to have these kinds of events on a continuing basis because my BE will continue to get worse, I will need to take a powerful rx each time and this time I am also taking a steroid inhaler to reduce the inflammation. Longer story short, for the last two days not just my thumbs but all my joints hurt and having had a bout with arthritis about 50 years ago, I know what that feels like and do not want this either! No fever at all.
So, just checking in. I will report these symptoms and will look for something else. Since my calcium score is in the middle for my age (81) and my Cholesterol/HDL ration is 3.6, I am hoping to try a different water based statin and maybe just aim for a total LDL under 100. We will see. I hope also that others have more luck with this medication which does appear to help.
Repatha disabled my shoulders. Quit after 2 doses. Went from 50 pushups every morning to 0. Still having issues 5 months later. Physical therapy helped a little but shoulder pain is debilitating. From 50 pushups to grinding my teeth putting on a coat and no help from docs!!!
@con123 I was really enjoying Repatha and the way it made my cholesterol come down with no joint pain. I started noticing flushing on my face. It was very hot and always really pink and felt swollen. And then around the 9th injection my reactions became a lot more irritating. I developed a very severe intense itch in my scalp on my neck and my upper back. It’s constant and actually makes me feel a bit crazy I do have to stop Repatha because my reaction is apparently an allergic sensitivity that is on the severe scale. So sad I thought I had found something that would work on high cholesterol. Sure hope it works for you and that you have no reactions.
-
Like -
Helpful -
Hug
2 Reactions@plumpudding I took one injection and not only had flushing, but a bad injection site reaction and cold- like symptoms. Can’t tolerate Repatha either. I’m currently trying a supplement with Bergamot and will retest lipids after the holidays. I agreed to add red yeast rice if the numbers were still too high. Dr mentioned trying Nexletol in the future but he seems ok with labeling me statin intolerant.
-
Like -
Helpful -
Hug
1 ReactionI want to add to my post re my decision to stop taking Repatha. I developed costochondritis meaning very sharp pain in the area where cartilage connects to my sternum. Had CT scan with contrast to rule out gall bladder, intestinal and pancreas problems as the pain was a sudden sharp tearing feeling that radiated to my shoulders. It has slowly lessened and I did nothing I know of to exascerbate it in the first place. Years ago I had an arthritis flare so it is possible I am just more sensitive to things. Hopefully others will benefit from this med. I will be closely paying attention to my diet and will try a low dose of pravastatin