Started Repatha - Side Effects

@johnjtgg my side effects are so extreme that I wonder what these drugs might be doing to those that take them and have no symptoms so they just keep taking them. Do side effects mean it’s harmful to me but not harmful to those without side effects? I recently FINALLY got off of Effexor. My doctors said it wouldn’t harm me, but, now, 20 years later I am paying the price for taking it even though I didn’t have side effects. It’s the side effects that caused me to quit statins and Repatha.

@llynch17056

In my opinion because Repatha (Evolocumab) is relativity new, it would be impossible to know extended "long term negative effects".
Doctors are not scientists. They read the data that is provided by the pharmaceutical companies. I have been health conscious most of my life and know my body. I have never had the sensation that Repatha caused in my life. When I told my cardiologist of what I called "mood swings" (not even sure if that is an accurate description) he was baffled as this is not common. Some reports indicate Neurotransmission is affected for some individuals with low cholesterol numbers. Because my cardiologist was so perplexed by what I explained to him makes me more skeptical that no one truly knows how, what, or why long term. Or someone like me with firsthand real/live data/information (I TOOK THE MEDICATION) what better source can you have. The only thing I have been told that this is not widely reported.

@johnjtgg I agree 100%. The part I just don’t get is when you tell your doctor what you are experiencing and they don’t believe you if it’s not in the written side effects or if what you are experiencing is a much more intense side effect than what was written. I truly think it would have killed me, my decline was so intense and quick. I understand it’s a new drug and they don’t know everything about it, but then they don’t believe their patients. That was the worse part. I also have been very in touch with my body throughout my life. I am intelligent. Why wouldn’t my cardiologist treat me with understanding and compassion? I really hated how much distress he caused me.

@llynch17056
At least you have/had the gray to have stopped. I seriously believe many people don't know what feeling optimal is. Then they are prescribed a medication, and they think that this is the new normal regardless of how the medication makes them feel. Because they have never felt as if they are running on High Octane or feeling exceptionally well most of their lives.

That's unfortunate that your Cardiologist wasn't more sympathetic with your situation. I would have had a hard time holding my tongue. I'm wishing you all the best....

@johnjtgg Actually I didn’t hold my tongue. I left him. I tried to get an appointment with a cardiologist DO in the same group but was shut out. Blackballed. I wasn’t rude, but I told him that I couldn’t understand why a cardiologist would say “I have nothing for you” after being told about the extreme side effects caused by statins and Repatha. I said “but, you are my cardiologist, how can you say that knowing the side effects?” I think a DO would be so much better. I’m having my first stress test next week. My Internist said he would follow me and he ordered the stress test.

@llynch17056
Unfortunate situation. Sorry to hear about his attitude, and then the blackballing. Terrible! As I shared, I am no longer on anything. Read about a low dose Stain such as Crestor, low dose, 5Mg once per WEEK. I have NOT done this as of yet, but I am Carefully/Cautiously considering it down the road. I have no problem with the effectiveness with these medications but as we have discussed it's the side effects. I guess it is possible with such a small dose my body can tolerate it without the side effects. I won't know until I try that approach. It is an approach for people such as ourselves, that cannot tolerate the medication.
When you do the Stress test it will be scored with MET. Metabolic Equivalent Of Task, I took one in March and scored a 17.2. That's excellent score for a 68-year-old. It's an excellent score for a 20year old. I row 4 days a week on a Concept 2 rower. Good luck with everything...

@llynch17056
Unfortunate situation. Sorry to hear about his attitude, and then the blackballing. Terrible! As I shared, I am no longer on anything. Read about a low dose Stain such as Crestor, low dose, 5Mg once per WEEK. I have NOT done this as of yet, but I am Carefully/Cautiously considering it down the road. I have no problem with the effectiveness with these medications but as we have discussed it's the side effects. I guess it is possible with such a small dose my body can tolerate it without the side effects. I won't know until I try that approach. It is an approach for people such as ourselves, that cannot tolerate the medication.
When you do the Stress test it will be scored with MET. Metabolic Equivalent Of Task, I took one in March and scored a 17.2. That's excellent score for a 68-year-old. It's an excellent score for a 20year old. I row 4 days a week on a Concept 2 rower. Good luck with everything...

@johnjtgg, you may find this podcast valuable. It includes a background as to why initial statin trials were misleading and how that impacts both doctors and patients. I am I patient at Mayo Clinic MN and the approach described as “looking like how blood pressure is treated” resonates with me. My numbers are controlled for the first time in my life. I get Inclisiran injections twice a year and my last one actually made me feel better. Additionally, I take lower doses of drugs I’ve tried before and had said, “never again”. Keep learning!
- Mayo Clinic re: Statin Myopathy https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/

@llynch17056, I love how you keep pushing to figure out how to keep moving forward. I look forward to what you learn from next week’s stress test.

Have any of your doctors talked to you about finding someone specializing in statin (cholesterol drug) intollerance?

@johnjtgg, you may find this podcast valuable. It includes a background as to why initial statin trials were misleading and how that impacts both doctors and patients. I am I patient at Mayo Clinic MN and the approach described as “looking like how blood pressure is treated” resonates with me. My numbers are controlled for the first time in my life. I get Inclisiran injections twice a year and my last one actually made me feel better. Additionally, I take lower doses of drugs I’ve tried before and had said, “never again”. Keep learning!
- Mayo Clinic re: Statin Myopathy https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/

@llynch17056, I love how you keep pushing to figure out how to keep moving forward. I look forward to what you learn from next week’s stress test.

Have any of your doctors talked to you about finding someone specializing in statin (cholesterol drug) intollerance?

@jlharsh
Very interesting thank you for sharing this. The part in which they weed out Statin intolerant individuals before accumulating the data in the trial was an eye opener! I didn't experience Myopathy while on the traditional class of statin. I did have increased joint stiffness. My Main intolerance was a form of diminished Neurotransmission. Traditional Statin overtime gave me a form of fogginess. The PCSK9/Repatha/Evolocumab gave me a form of mood swings. With both medications each have a completely different molecular property/structure but demonstrated similar side effects regarding cognitive or neurotransmission. I find this fascinating. Then you explain this to Pharma people, or Cardiologist, and it doesn't present itself in anything they have been given to read. The response: This is not typical. The one denominator/variable was this neurotransmission reared its head in all my history after my numbers plummet. I experienced this side effect with total cholesterols a little over 100 and LDL getting into the 40's and while on the Repatha LDL of 37. More severe with the Repatha, I am not a doctor but if this doesn't explain some kind of correlation with certain individuals in which cholesterol numbers fall, then I must be missing something. In which I am not...