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Repatha, side effects and what comes next?

Heart & Blood Health | Last Active: 5 days ago | Replies (80)

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Profile picture for rhondaj @rhondaj

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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Replies to "I have been off Repatha for about eight and a half months and am still having..."

How are you doing, @rhondaj? It has been a couple months since you commented about your journey through all-things Repatha recovery, 10 months after discontinuing the drug. I so hope you are continuing to get better.

We sound similar in that we are both taking one symptom at a time through our respective journeys. I imagine you have been very concerned about your heart and looking forward to getting issues addressed.

Have you seen your cardiologist yet? Are you having cardio, GI, other syptoms at this point?