I took only one injection and 3 days later, I woke up with major congestion and nasal discharge along with flushing and the injection site bruised badly. I also had a back ache similar to the statin reaction. My cardiologist agreed that I can’t tolerate any of these meds, so I’m trying beta sistosterol and hoping for the best.
I am learning a lot on this blog. Thanks to all. I will now use the words and expressions that others use. I have taken 17 Repatha injections and then the back pain and some joint pain became too much and I quit. Repatha did lower LDL, but at a cost in side effects, Since quitting Repatha, these symptoms have gone away almost completely. I have no more back pain or random severe joint pain.
Other symptoms that I have may or may not be attributble to Repatha. I had several spells of light-headedness that sometimes ended in falls. Now that I am off Repatha, that is getting better and I am not sure why. Could somebody who understands medicine better than I please answer this question : if Repatha can be blamed for my light-headedness and fainting, what might be the mechanism of action? Could it be brain cells used to high LDL levels that with Repatha no longer have adequate fat to function right?
Hi @tatiana987
Disclaimer 😀: This may be oversimplified and definitely not complete, and I do not necessarily understand medicine. I finally am at a place with a doctor I trust to know the science who trusts me knowing my body. He recommends to me what to do and I do it, a great partnership! Having said this, I approach things by first pinning down what I know about them then explore from there trying to keep them as simple as possible.
I understand the liver is part of our GI system and filters all kinds of things. I know Repatha works in the liver to help it get rid of cholesterol. I am learning about the gut-brain connection and that what happens in the gut affects so much more. I will stay tuned with you to learn more from others.
I believe you mentioned your light-headedness spells started since you have been on Repatha. Please correct me if that is not correct. Keeping a log of my systemic symptoms has helped me.
Do you notice a cycle of symptoms at all? Do you notice your diet or activity level makes any difference?
I have been off Repatha for about eight and a half months and am still having lasting side effects from the drug. I had severe edema, tendons snapping for no reason, constant UTI's, back pain, severe edema and severe joint stiffness to the point of falling over and not being able to get back up. Before getting on this drug, I could do Yoga very easily and was very active. I had absolutely no physical disabilities of any kind. I was on it for four years, and the last two years were horrible. I thought that I was aging fast. I was not. It was the Repatha all along. The edema and joint stiffness are the two remaining conditions. My rheumatologist told me that it may take some time to get the damage reversed. My primary sent me to her because I still have loss of use of my dominant hand and I tested positive for Rheumatoid Arthritis. I changed my diet to a strict Mediterranean diet and removed all nightshade veggies. I did this for a month and then the Rheumatologist retested me. I now read negative for Rheumatoid Arthritis. She said that Repatha did such damage to my body, that it is taking time for my body to heal. She feels that it will eventually recede. She told me that she sees many patients that have had long term side effects from Repatha and other injectable cholesterol drugs. In the meantime, I am have a cardiologist appointment coming up. The next concern is that the edema was so severe in my abdominal area there is some concern that it may have done damage to my heart.
Hi @tatiana987
Disclaimer 😀: This may be oversimplified and definitely not complete, and I do not necessarily understand medicine. I finally am at a place with a doctor I trust to know the science who trusts me knowing my body. He recommends to me what to do and I do it, a great partnership! Having said this, I approach things by first pinning down what I know about them then explore from there trying to keep them as simple as possible.
I understand the liver is part of our GI system and filters all kinds of things. I know Repatha works in the liver to help it get rid of cholesterol. I am learning about the gut-brain connection and that what happens in the gut affects so much more. I will stay tuned with you to learn more from others.
I believe you mentioned your light-headedness spells started since you have been on Repatha. Please correct me if that is not correct. Keeping a log of my systemic symptoms has helped me.
Do you notice a cycle of symptoms at all? Do you notice your diet or activity level makes any difference?
Thanks for your thoughtful reply. I notice no « cycle of symptoms » and I too keep a log, have for 2 years minus a few periods of discouragement where there are lapses in the record keeping. No cycle, but some triggers perhaps and some helpful things.
I know with 1000% certainty that a walk in cool, fresh air helps me feel better and lower my blood pressure. No question there. It may be the only thing that works with consistency.
After starting Repatha, I have had some reactions (dry mouth and eyes at night, thirst) to sugary foods for sure, but more obvious are strong cravings for specific foods (usually shellfish) and strong répulsion to others I used to enjoy (like ice cream). This is new to me and not consistent.
About my history, I have had fainting spells before, about 19 years ago. That was solved by a beta blocker (Metoprolol) and acupuncture (traditional, only 3 sessions with old Chinese guy who laughed at the medical treatment I had received. He said, « You have spent $50,000 trying to fix this problem and I can cure you today. » I will say he was basically right. I was cured for a long time.)
Current problem started perhaps April 2024 with bad fall, due to blackout after hot bath. I began Repatha Sept 2024, took 17 shots two weeks apart and had 13 falling/fainting incidents, the last one, which was mild, half strength I would say, on June 12, 2025. I stopped Repatha on May 21, 2025.
I am somewhat familiar with how scientists determine cause. I had fainting/falling problems before I took Repatha, but when I started Repatha, the frequency and severity and the predictability of the spells changed dramatically. All increased a lot. I lost my driver’s license due to these spells. Disaster for me! I know that in order to believe Repatha is the cause of the spells I need to find a plausible mechanism of action. I need speculation or a hypothesis. My speculation is based on zero medical education, so better educted people might really help me by hypothesizing or speculating.
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That’s what I am taking, too due to extreme side effects from statins and Repatha. Please report your testing outcomes here. Thank you for this post.
Hi @tatiana987
Disclaimer 😀: This may be oversimplified and definitely not complete, and I do not necessarily understand medicine. I finally am at a place with a doctor I trust to know the science who trusts me knowing my body. He recommends to me what to do and I do it, a great partnership! Having said this, I approach things by first pinning down what I know about them then explore from there trying to keep them as simple as possible.
I understand the liver is part of our GI system and filters all kinds of things. I know Repatha works in the liver to help it get rid of cholesterol. I am learning about the gut-brain connection and that what happens in the gut affects so much more. I will stay tuned with you to learn more from others.
I believe you mentioned your light-headedness spells started since you have been on Repatha. Please correct me if that is not correct. Keeping a log of my systemic symptoms has helped me.
Do you notice a cycle of symptoms at all? Do you notice your diet or activity level makes any difference?
I have been off Repatha for about eight and a half months and am still having lasting side effects from the drug. I had severe edema, tendons snapping for no reason, constant UTI's, back pain, severe edema and severe joint stiffness to the point of falling over and not being able to get back up. Before getting on this drug, I could do Yoga very easily and was very active. I had absolutely no physical disabilities of any kind. I was on it for four years, and the last two years were horrible. I thought that I was aging fast. I was not. It was the Repatha all along. The edema and joint stiffness are the two remaining conditions. My rheumatologist told me that it may take some time to get the damage reversed. My primary sent me to her because I still have loss of use of my dominant hand and I tested positive for Rheumatoid Arthritis. I changed my diet to a strict Mediterranean diet and removed all nightshade veggies. I did this for a month and then the Rheumatologist retested me. I now read negative for Rheumatoid Arthritis. She said that Repatha did such damage to my body, that it is taking time for my body to heal. She feels that it will eventually recede. She told me that she sees many patients that have had long term side effects from Repatha and other injectable cholesterol drugs. In the meantime, I am have a cardiologist appointment coming up. The next concern is that the edema was so severe in my abdominal area there is some concern that it may have done damage to my heart.
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1 ReactionThanks for your thoughtful reply. I notice no « cycle of symptoms » and I too keep a log, have for 2 years minus a few periods of discouragement where there are lapses in the record keeping. No cycle, but some triggers perhaps and some helpful things.
I know with 1000% certainty that a walk in cool, fresh air helps me feel better and lower my blood pressure. No question there. It may be the only thing that works with consistency.
After starting Repatha, I have had some reactions (dry mouth and eyes at night, thirst) to sugary foods for sure, but more obvious are strong cravings for specific foods (usually shellfish) and strong répulsion to others I used to enjoy (like ice cream). This is new to me and not consistent.
About my history, I have had fainting spells before, about 19 years ago. That was solved by a beta blocker (Metoprolol) and acupuncture (traditional, only 3 sessions with old Chinese guy who laughed at the medical treatment I had received. He said, « You have spent $50,000 trying to fix this problem and I can cure you today. » I will say he was basically right. I was cured for a long time.)
Current problem started perhaps April 2024 with bad fall, due to blackout after hot bath. I began Repatha Sept 2024, took 17 shots two weeks apart and had 13 falling/fainting incidents, the last one, which was mild, half strength I would say, on June 12, 2025. I stopped Repatha on May 21, 2025.
I am somewhat familiar with how scientists determine cause. I had fainting/falling problems before I took Repatha, but when I started Repatha, the frequency and severity and the predictability of the spells changed dramatically. All increased a lot. I lost my driver’s license due to these spells. Disaster for me! I know that in order to believe Repatha is the cause of the spells I need to find a plausible mechanism of action. I need speculation or a hypothesis. My speculation is based on zero medical education, so better educted people might really help me by hypothesizing or speculating.
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Like -
Helpful -
Hug
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