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DiscussionRepatha, side effects and what comes next?
Heart & Blood Health | Last Active: 16 hours ago | Replies (103)Comment receiving replies
Replies to "Hi @rhondaj, I am tagging @donlynn to make sure they see your comment. Donlynn, what has..."
@jlharsh
Hi Janell,
I have an update on all of my symptoms. It has been a year long process to discover how to recover from the damage that Repatha caused. I still do not have full use of my dominant hand. I understand that it could take years to undo the damage that Repatha caused, so am moving forward with life at a limited capacity and pray that my body can heal from the damage.
However, after my doctors proceeded with every test available, they finally discovered what other damage occurred after taking this drug. Being that I had the physical ability of someone in their forties while in my sixties prior to using Repatha, I have had significant damage. I still have trouble doing simple things with my hands, and my strength has decreased by about 75%.
They have now discovered that I have venous insufficiency in both legs. My heart is fine. I have significant insufficiency in my left mid thigh and knee segments and significant insufficiency in my right mid calf segments, knee and throughout the thigh segments. I am sure this was caused by the Repatha as well, as I had nothing wrong with me and zero symptoms prior to being subjected to this drug. The only medical issue that I had was high cholesterol due to hypocholesterolmia before agreeing to go on this drug. Being that this was the only drug that I was on, it is very clear what damage it caused since there is no other drug involved. I am going to have to have a medical procedure to stop the leaks and will have to wear compression stockings for the rest of my life.
I am waiting to get approval for the procedure, but have found that the compression socks have helped with some of my symptoms. I thought that you should know what I found out, since your symptoms are very similar to mine. I had a doppler a year ago but it was to discover if I had clots, which I did not. This final test was a Bilateral Lower Extremity Venous Duplex. It was to check for clots, but more importantly, to check for leakage of the veins.
I am glad that I kept pushing the doctors to keep looking, because I knew something was not right. I have my answer now. If anyone on this thread has had some of the same symptoms as myself, I hope you have your doctors order this test. I would be interested to know how many of us have this same issue now.
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Hi Janell,
I have not tried a pelvic floor therapist as of yet. I find that when I am swimming, even if I am floating and just paddling my legs and doing scissor exercises in the water, I have significant improvement. I know that water exercises help with getting lymph to flow and help to reduce edema. That is why I went directly to that particular exercise.
I also open up the main lymphatic pathways by Manual Lymph Drainage. I use the Vodder technique. If you do this, be sure to use someone that is certified in it.
How would the pelvic floor exercises help with inflammation and edema in the groin, leg and stomach area? I will definitely do some research on this.
Now that I have the inflammation down, I am seeing that it begins in my groin area even though it spreads to the other areas when I am having an episode. I avoid long car rides, sitting for too long and I have had to completely avoid plane trips for now. I have severe issues for weeks and weeks when I travel by plane.
Thank you for the input. I will definitely check on pelvic floor therapy as well.