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DiscussionRepatha, side effects and what comes next?
Heart & Blood Health | Last Active: 4 minutes ago | Replies (128)Comment receiving replies
Replies to "@rhondaj What were your principal side effects from repatha"
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@bmcel
First two years:
Constant unexplained UTI's - some were rare forms
Constant Back, Leg and Hip Pain
I did not realize it was from Repatha
Third and Fourth Years:
By the fourth year, these symptoms increased tremendously.
1. Pulling strain on back thighs and inside of thighs- pain level about a 6, some days higher. 2024
2. Severe joint inflammation to the point that I would walk like a penguin the first 15-20 minutes after I woke in the morning. I would limp the rest of the day.
Severe inflammation to the point of not being able to walk properly.
3. Left foot dragging by 4th year 2024
4. Falling all of the time and inability to get up. My legs would not support myself. Unable to squat or stand back up. This was gradual in 2023 and increased significantly in 2024 (Completely gone now.)
5. Intermittent and severe edema in the abdomen, groin and legs. I cannot sit for very long, travel in a car for long periods or be on my feet for long periods of time. Flying is out of the question, as it remained severe for 2 months after the flight.
I am incapable of doing yoga now. Most of the hobbies that I had, I can no longer do. I have started to barely be able to knit for short periods of time. I used to knit every day for about 30-60 minutes. I am lucky if I last 10 minutes twice a week. I can't hold a paint brush very well anymore, so have not tried to paint. I can no longer work with epoxy. Most all of my creative hobbies have been stripped from my life. I try to use my exercise bike, but sometimes it causes edema. Swimming seems to be the one thing that I can do with no repercussions. I type much slower now and text slower with more mistakes, but I can at least do it now. I have difficulty opening jars, cleaning and cooking are harder to do, but I can do some for short periods of time. I used to be able to go non-stop for hours and hours, so it is significant damage.
6. Tendon in foot snapped for no reason - July 2023
7. Inability to step up, bend down or get up off of the floor. 2024
Severe Exhaustion 2023 and 2024
Some inflammation in arms and hands as well. - was severe, but has decreased in severity since being off the drug.
Symptoms of Rheumatoid Arthritis- which my Rheumatologist has confirmed that I do not have and it is long term damage from Repatha
I fell about a week or so after the doctor agreed to take me off the Repatha. I broke my hand, but it was the fingers on both hands that stopped working. I kept telling the doctor that the break does not even hurt. I went to therapy for over 6 months. Left hand is much better, but the strength of my hand has significantly reduced since the injury. Right hand has loss of use for most things for three fingers and some with the other two. It took over three months just to dress myself. I have significant decrease in strength in my right and left hand, but particularly my dominant hand. Physical therapist could not figure it out, because I was doing my hand exercises daily. That is when my doctor sent me to a rheumatologist...my inflammation markers go up and down.
I still have inflammation, but it has decreased over the 13 month period. Tests show that I have significant vascular insufficiency in both legs. I am sure this is from Repatha, as I was strong as a bull and very active prior to being on this drug. I did yoga, and could physically do most anything that a forty year old could. I had zero symptoms of any kind prior to being on this drug. My stamina level in my early sixties was like someone in their forties. By my third year on the drug I felt like I had aged thirty or forty years.
The third and fourth years were the years that I thought I was aging fast. I was not... it was from the Repatha. Since being off the drug, I my inflammation is going down but I still have issues with my legs and groin area filling up and loss of mobility in my hands. I have been told that it may take years for my body to recover from the damage that Repatha caused.