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Repatha, side effects and what comes next?
Heart & Blood Health | Last Active: 3 minutes ago | Replies (128)Comment receiving replies
I just found this thread and am thankful for all the comments. I have just completed my third injection of Repatha. I had a lot of trouble with muscle pain on two different statins as well as fatigue. So, I started to notice that I have been feeling depressed for no apparent reason. I also have increasing leg pain in my right leg between my knee and ankle which exactly feels like it did on statins. A little light headiness, increasing right shoulder pain, and get up in the morning just feeling off. I do have high ldl and a history of heart disease in my family. Had a heart cath done six weeks ago and although I do have heart disease there were no stents put in and no real serious obstructions. The depression worries me as it is totally unlike me. I started crying on the phone to my husband telling him I thought I really needed to get off Repatha but the doctors have me so scared of heart disease that I don't know what to do. This is totally atypical behavior for me! I am 75, very active, eat healthy, am not overweight, and love my life ( with the exception of this recent anxiety and depression.) I don't want to go down this road with Repatha and ruin the rest of my life with the side effects as I'm not too far along with this medication. Have I given it enough time? Will my body adjust? Has anyone tried anything else after statins and Repatha that worked without terrible side effects? I feel fortunate to find a group that is speaking about this as there doesn't seem to be too much out there about real life consequences from this drug.
Replies to "I just found this thread and am thankful for all the comments. I have just completed..."
Good to hear your input. I would call Repatha « insidious ». Its effects are not direct, obvious, clear, but with careful record keeping of the details, times of shots and times and descriptions of symptoms, it is possible to figure out what is caused by the drug and what other causes. Repatha’s very long half-life must be considered in figuring things out. It hangs around in your body for a very long time. I sometimes wonder whether its effects are over even now for me. My final shot was in May of 2025.
I am going to try Inclisinan, aka Leqvio next. Medicare wouldnot pay for Leqvio until I had tried Repatha first. I wonder how many patients die of Repatha without trying the more expensive med? I certainly had near misses in the many falls I took, I now understand, were caused by Repatha. The falls have stopped completely now that I have detoxed from Repatha.
Beware of the Repatha dizziness,
Hi, @martspir. It sounds like your body is not responding well to Repatha. You have probably read on Connect how Repatha’s side effects can be sneaky making it helpful to track a timeline of treatment dates and adverse feelings. Thankfully like you mention looking for options, several treatments are available.
I am not a trained medical professional, but a someone trying to control LDL cholesterol like you. My current care team has helped me get to where I am now. My LDL is controlled better than it has ever been. I can share what I have learned some of what I have learned from my experience, like:
- with statins, more is not necessarily better. They seem to work better at lower doses and at times, less frequency than taking them every day. A little bit of another drug added may actually give better results than either drug would do on their own.
- Inclisiran is a new injection that one of my doctors told me worked the same as Repatha. But, it works differently. I am taking it and do not have the side effects I’ve had with Repatha (or other treatments).
Have you had a chance to discuss how you are feeling with your prescribing doctor?
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@martspir
I decided it is time for me to give back. I have found the information on the Repatha threads very helpful because as you say, there is not much out there. I recently ( a month ago) stopped Repatha due to pain in my hands which made it hard to hold things among other issues. I had been on Repatha for 10 months, and the hand pain started with the last 2 injections. Prior to that I had developed leg and back pain, and was going to PT which wasn't helping. I am a very active and athletic 70+ year old, normal weight, mostly vegan. I am also now realizing that I was depressed on the Repatha. So after being off for a month, the depression is gone, the hands are slowly becoming less painful and the back pain is slowly dissipating. I hope all the pain goes away, they say it takes 2 or 3 months to get out of one's system. Also, I am looking for an alternative, I have had body pain on several statins which led to the Repatha. I have a high Lipoprotein a level and LDL issues which are genetic.