Have been taking Repatha 6 months. Cholesterol is crazy low. LDL is 2!! My knees are starting to kill me in the evenings. A Good nights rest and they are better. Is it Repatha ? Oh I had a heart valve replace in late January this year. Doing well from that. Statins have bad side effects for me also. Think I’ll drop Repatha to see if the pain goes away. Any experience to share ?
@donlynn started this discussion asking a very similar question to yours. @llynch17056, @jlharsh and @tatiana987 are just a few members who shared their experiences with Repatha in this discussion.
You may also find the following lengthy discussion focused on Repatha side effects useful as well:
Interesting question! I never considered that my recent backache could be from Repatha, but sure enough it listed as a common side effect. I take an extra tylenol and do some stretching because it is the only thing I can tolerate that lowers my LDL.
It is a low-grade persistent ache, and gets worse when I stand for long periods (walking seems ok.)
Over the past 3 months, I have concentrated on doing my back stretching and strengthening exercises about 5 times a week, and the pain is almost unnoticeable most days- except for the next 2 after injection day. On one of those days, I am often hit with a bout of fatigue that makes me want to lay down and sleep too.
I tolerate these because compared to statins, this is nothing, and my LDL continues to fall.
I am about 5 weeks into Repatha detox. Last shot May 21. Most side effects are mostly gone. By August 21, the half-life calculation says the Repatha is out of my body. Is there permanent damage? I don’t know. I do get some reminders of the old pain, but it is minor compared to what was horrendous before.
Has anyone here had the experience of new autonomic nervous system disfunction while taking Repatha? That happened to me, and maybe during the detox period it is going away. Not sure yet.
Great question, @csullivan21, one I would like I to confirm but probably never will be able to. I struggle now and believe my history with Repatha is part of it.
I am about 5 weeks into Repatha detox. Last shot May 21. Most side effects are mostly gone. By August 21, the half-life calculation says the Repatha is out of my body. Is there permanent damage? I don’t know. I do get some reminders of the old pain, but it is minor compared to what was horrendous before.
I recorded carefully beginning, not because I suspected Repatha, but because my blood pressure was uncontrolled and I was light-headed and fell several times. My first record of pain was in “liver area” and corresponds in time with shot #5. By “liver area” pain I mean in the back, above waist, right side, like gall bladder pain, which I am familiar with because mine was removed in 1981. “Liver pain” ranged from mild to severe, lasted about 3 days after shot #5 to in the end lasting the full 2 weeks between shots, from shot #5 to #17. My belief currently is that nerves are affected, even the autonomic nervous system. (evidence? Tingly legs and sometimes arms with a lot of nausea, plus Stanford autonomic testing found abnormalities in parasympathetic, sympathetic adrenergic, and sympathetic cholinergic function. (I have no idea what I just said.)
Another type of pain was in back of neck, sometimes also in shoulder to elbow right side. Hard to describe except that it was so severe that I was screaming. First happened after shot#13, happened again 3-4 times over a few weeks, seemed related to sitting and leaning back in the chair, Mercifully, pain only lasted 15-20 minutes, but left me exhausted, possibly related to watching a screen and wearing headsets.
Third type of pain is a milder return of old statin-caused, crippling polymyalgia rheumatica joint and movement pain. This type pain seems related to Repatha shots but who knows? It is just a reminder, not the full crippling horror of PMR. Most joints ache, short time, not debilitating.
Oddly, much of the time now, after quitting Repatha, I have very little or no pain. I almost think my brain is not registering pain now. I have a while to go before I reach to full detox date in August. My LDL has not been tested during detox.
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Hello @swaimm1,
I combined your discussion on Repatha side effects with an existing discussion of the same topic, titled:
"Repatha, side effects and what comes next?"
- https://connect.mayoclinic.org/discussion/repatha-and-side-effects
@donlynn started this discussion asking a very similar question to yours. @llynch17056, @jlharsh and @tatiana987 are just a few members who shared their experiences with Repatha in this discussion.
You may also find the following lengthy discussion focused on Repatha side effects useful as well:
"Started Repatha - Side Effects"
- https://connect.mayoclinic.org/discussion/started-repatha/
@swaimm1, have you discussed stopping the Repatha with your provider or the pain you are feeling in your knees at night?
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3 ReactionsDid the side effects end when you discontinued?
Is the back pain muscular, joint or kidney paint?
It is a low-grade persistent ache, and gets worse when I stand for long periods (walking seems ok.)
Over the past 3 months, I have concentrated on doing my back stretching and strengthening exercises about 5 times a week, and the pain is almost unnoticeable most days- except for the next 2 after injection day. On one of those days, I am often hit with a bout of fatigue that makes me want to lay down and sleep too.
I tolerate these because compared to statins, this is nothing, and my LDL continues to fall.
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1 ReactionMy husband takes Repatha 6 months now, no side effects and glad to be off statins.
I am about 5 weeks into Repatha detox. Last shot May 21. Most side effects are mostly gone. By August 21, the half-life calculation says the Repatha is out of my body. Is there permanent damage? I don’t know. I do get some reminders of the old pain, but it is minor compared to what was horrendous before.
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Helpful -
Hug
1 ReactionHas anyone here had the experience of new autonomic nervous system disfunction while taking Repatha? That happened to me, and maybe during the detox period it is going away. Not sure yet.
Great question, @csullivan21, one I would like I to confirm but probably never will be able to. I struggle now and believe my history with Repatha is part of it.
Very interested in your experience and learnings. Can you share what specific pain you had. All joints selected joints etc.
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1 ReactionI recorded carefully beginning, not because I suspected Repatha, but because my blood pressure was uncontrolled and I was light-headed and fell several times. My first record of pain was in “liver area” and corresponds in time with shot #5. By “liver area” pain I mean in the back, above waist, right side, like gall bladder pain, which I am familiar with because mine was removed in 1981. “Liver pain” ranged from mild to severe, lasted about 3 days after shot #5 to in the end lasting the full 2 weeks between shots, from shot #5 to #17. My belief currently is that nerves are affected, even the autonomic nervous system. (evidence? Tingly legs and sometimes arms with a lot of nausea, plus Stanford autonomic testing found abnormalities in parasympathetic, sympathetic adrenergic, and sympathetic cholinergic function. (I have no idea what I just said.)
Another type of pain was in back of neck, sometimes also in shoulder to elbow right side. Hard to describe except that it was so severe that I was screaming. First happened after shot#13, happened again 3-4 times over a few weeks, seemed related to sitting and leaning back in the chair, Mercifully, pain only lasted 15-20 minutes, but left me exhausted, possibly related to watching a screen and wearing headsets.
Third type of pain is a milder return of old statin-caused, crippling polymyalgia rheumatica joint and movement pain. This type pain seems related to Repatha shots but who knows? It is just a reminder, not the full crippling horror of PMR. Most joints ache, short time, not debilitating.
Oddly, much of the time now, after quitting Repatha, I have very little or no pain. I almost think my brain is not registering pain now. I have a while to go before I reach to full detox date in August. My LDL has not been tested during detox.
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3 Reactions