Awful, @rhondaj!
I love how you are persevering through recovery, and again am hopeful you will get completely get there.
I remember reading your research about the drug, company and trials helped your doctors agree to look at Repatha as your culprit. That led you to Mayo Clinic Connect searching for more people impacted by Repatha. I found Connect in a similar way, seeking out help trying to put together pieces of my own systemic issues. I am glad we connected. I want to invite @dawnrsmith66, @scpatient24, and @tatiana987 because I do not believe they have posted in this discussion but have commented in others about having problems with Repatha.
What have you learned from your research? What cardiovascular symptoms are you having, and are there specific inflammation markers you are trying to improve?
Thank you for the invite. I wish that I could tolerate Repatha, but had to give up the drug after 4 months as the GI issues were truly crippling. Repatha worked magic on my numbers, but I lost total quality of life that I’ve regained since going off Repatha.
Thank you for the invite. I wish that I could tolerate Repatha, but had to give up the drug after 4 months as the GI issues were truly crippling. Repatha worked magic on my numbers, but I lost total quality of life that I’ve regained since going off Repatha.
Repatha works well for so many people. I am sorry it didn’t work for you, @scpatient24. Thank you for providing an update. It is encouraging to hear you are doing better.
Are you able to control your cholesterol levels now? What did you do to feel better since discontinuing Repatha, and what are you able to get back to doing again?
You are welcome. I want everyone to know what to watch for, because the side effects were way more significant and debilitating than what the drug company discloses to the public. That is why it took so long for me to figure out what was happening to me.
I definitely checked with my doctors. It took a while for my endocrinologist to agree. He finally took me off of it for one month to see what would happen. There is no question now that it was Repatha that caused my problems, and it was way worse than muscle pain or flu-like symptoms. I wish it was only that. Unfortunately, Repatha did long term damage to my body. My Rheumatologist told me that it could take years to recover from the damage that the drug did.
Unfortunately for me, the long term side effects are life changing.
Hi Donlynn,
Yes, I had to stop. I had debilitating side effects that came on slowly over the years. It took a while to figure out that it was Repatha. Unfortunately, I have long term damage now.
My side effects were constant, unexplained UTI's- some of them were a rare strain, back pain, leg and hip pain (I would walk like a penguin for the first 15-20 minutes when I got up from bed and limp after that for the rest of the day), severe inflammation to the point of being unable to walk properly, left foot dragging, severe lack of flexibility in hips and legs, tripping all of the time, intermittent and severe edema in the abdominal, groin and legs, tendon in foot snapping for no reason at all, inability to step up, bend down or get up off of the floor, and severe exhaustion. I was healthy and very active before getting on this drug. I was on the drug for four years. The first two years they had me on a statin as well...the last two years I was only on Repatha, so there was no other drug involved. I still cannot do yoga, have difficulty doing simple things like typing, picking up a glass, opening a can of tuna, dressing in anything with zippers or buttons, preparing meals, cleaning the house and it has impaired my ability to work full time. I fell about a week after the doctor agreed that I should go off the drug. I could not use either hand for months, and the rest of my body was swollen. After 6 months of PT, they determined something else was going on. After being off the drug for 11 months or so, many of the side effects have dissipated....unfortunately, I have lost some of the use of my right hand(Rheumatologist confirmed that I do not have Rheumatoid arthritis, but that it is a long term side effect from the drug, symptoms are the same though) and I still have intermittent edema in my legs, stomach and groin area that can be very painful when it flares. I have to be very strict with my diet, swim and I am taking supplements to help with the inflammation. If I vary at all, the symptoms come back with a vengeance. Sometimes, I have flare ups for no reason at all. Something as simple as working at my desk or driving for four hours can cause a flare up for days or weeks. I flew to Texas and it took two months to be somewhat normal again. The doctors have run every test you can think of to eliminate other causes. I have two more tests to go regarding the edema, but at this point, it is leaning towards Repatha damage for my remaining symptoms, and the inability to use my dominant hand (and Rheumatoid like symptoms throughout my body) have been confirmed to be caused by the Repatha.
Hi Donlynn,
Yes, I had to stop. I had debilitating side effects that came on slowly over the years. It took a while to figure out that it was Repatha. Unfortunately, I have long term damage now.
My side effects were constant, unexplained UTI's- some of them were a rare strain, back pain, leg and hip pain (I would walk like a penguin for the first 15-20 minutes when I got up from bed and limp after that for the rest of the day), severe inflammation to the point of being unable to walk properly, left foot dragging, severe lack of flexibility in hips and legs, tripping all of the time, intermittent and severe edema in the abdominal, groin and legs, tendon in foot snapping for no reason at all, inability to step up, bend down or get up off of the floor, and severe exhaustion. I was healthy and very active before getting on this drug. I was on the drug for four years. The first two years they had me on a statin as well...the last two years I was only on Repatha, so there was no other drug involved. I still cannot do yoga, have difficulty doing simple things like typing, picking up a glass, opening a can of tuna, dressing in anything with zippers or buttons, preparing meals, cleaning the house and it has impaired my ability to work full time. I fell about a week after the doctor agreed that I should go off the drug. I could not use either hand for months, and the rest of my body was swollen. After 6 months of PT, they determined something else was going on. After being off the drug for 11 months or so, many of the side effects have dissipated....unfortunately, I have lost some of the use of my right hand(Rheumatologist confirmed that I do not have Rheumatoid arthritis, but that it is a long term side effect from the drug, symptoms are the same though) and I still have intermittent edema in my legs, stomach and groin area that can be very painful when it flares. I have to be very strict with my diet, swim and I am taking supplements to help with the inflammation. If I vary at all, the symptoms come back with a vengeance. Sometimes, I have flare ups for no reason at all. Something as simple as working at my desk or driving for four hours can cause a flare up for days or weeks. I flew to Texas and it took two months to be somewhat normal again. The doctors have run every test you can think of to eliminate other causes. I have two more tests to go regarding the edema, but at this point, it is leaning towards Repatha damage for my remaining symptoms, and the inability to use my dominant hand (and Rheumatoid like symptoms throughout my body) have been confirmed to be caused by the Repatha.
Hi @rhondaj, I am tagging @donlynn to make sure they see your comment. Donlynn, what has your experience been with Repatha?
Rhondaj, I think I also read that you swim. With the similarities we have in symptoms and what seems to work for each of us I thought I’d pipe in. I spent some time swimming that seemed to really help. Also, have you talked to a pelvic floor therapist at all? There are a lot of muscles, generally a lot going that they understand.
Hi @rhondaj, I am tagging @donlynn to make sure they see your comment. Donlynn, what has your experience been with Repatha?
Rhondaj, I think I also read that you swim. With the similarities we have in symptoms and what seems to work for each of us I thought I’d pipe in. I spent some time swimming that seemed to really help. Also, have you talked to a pelvic floor therapist at all? There are a lot of muscles, generally a lot going that they understand.
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.
I cannot take statins, tried every kind, every dose. Tried Repatha TWO times. I wanted it to work for me, but, again, the pain reduced my quality of life too much to continue. I just heard about Nexleton for those that can’t tolerate statins. The list of side effects is long and scary. I have been trying these drugs for 30 years and feel like a poster child for horrible side effects that sometimes take months to get over. It feels like I am wrecking my body with these medication “trials.” I am sad and at a loss. My doctor has convinced me that I am dying of CAD, but the only time I feel like I am dying is when I take these medications. I am so worn out.
I cannot take statins as well, like you, same issues. Like you I tried Repatha twice. I really wanted it to work but I had a horrible experience with a long list if extreme side effects leaving me fearful of trying other medications (still recovering after 5 months). If you find something that works speak up, for I am in the same boat as you. I haven't tried a plant based whole food diet yet, that is next on my list. If it lowers my numbers I'll post back. Much luck to you.
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Thank you for the invite. I wish that I could tolerate Repatha, but had to give up the drug after 4 months as the GI issues were truly crippling. Repatha worked magic on my numbers, but I lost total quality of life that I’ve regained since going off Repatha.
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4 ReactionsRepatha works well for so many people. I am sorry it didn’t work for you, @scpatient24. Thank you for providing an update. It is encouraging to hear you are doing better.
Are you able to control your cholesterol levels now? What did you do to feel better since discontinuing Repatha, and what are you able to get back to doing again?
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1 ReactionYou are welcome. I want everyone to know what to watch for, because the side effects were way more significant and debilitating than what the drug company discloses to the public. That is why it took so long for me to figure out what was happening to me.
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Helpful -
Hug
5 ReactionsI definitely checked with my doctors. It took a while for my endocrinologist to agree. He finally took me off of it for one month to see what would happen. There is no question now that it was Repatha that caused my problems, and it was way worse than muscle pain or flu-like symptoms. I wish it was only that. Unfortunately, Repatha did long term damage to my body. My Rheumatologist told me that it could take years to recover from the damage that the drug did.
Unfortunately for me, the long term side effects are life changing.
-
Like -
Helpful -
Hug
1 ReactionHi Donlynn,
Yes, I had to stop. I had debilitating side effects that came on slowly over the years. It took a while to figure out that it was Repatha. Unfortunately, I have long term damage now.
My side effects were constant, unexplained UTI's- some of them were a rare strain, back pain, leg and hip pain (I would walk like a penguin for the first 15-20 minutes when I got up from bed and limp after that for the rest of the day), severe inflammation to the point of being unable to walk properly, left foot dragging, severe lack of flexibility in hips and legs, tripping all of the time, intermittent and severe edema in the abdominal, groin and legs, tendon in foot snapping for no reason at all, inability to step up, bend down or get up off of the floor, and severe exhaustion. I was healthy and very active before getting on this drug. I was on the drug for four years. The first two years they had me on a statin as well...the last two years I was only on Repatha, so there was no other drug involved. I still cannot do yoga, have difficulty doing simple things like typing, picking up a glass, opening a can of tuna, dressing in anything with zippers or buttons, preparing meals, cleaning the house and it has impaired my ability to work full time. I fell about a week after the doctor agreed that I should go off the drug. I could not use either hand for months, and the rest of my body was swollen. After 6 months of PT, they determined something else was going on. After being off the drug for 11 months or so, many of the side effects have dissipated....unfortunately, I have lost some of the use of my right hand(Rheumatologist confirmed that I do not have Rheumatoid arthritis, but that it is a long term side effect from the drug, symptoms are the same though) and I still have intermittent edema in my legs, stomach and groin area that can be very painful when it flares. I have to be very strict with my diet, swim and I am taking supplements to help with the inflammation. If I vary at all, the symptoms come back with a vengeance. Sometimes, I have flare ups for no reason at all. Something as simple as working at my desk or driving for four hours can cause a flare up for days or weeks. I flew to Texas and it took two months to be somewhat normal again. The doctors have run every test you can think of to eliminate other causes. I have two more tests to go regarding the edema, but at this point, it is leaning towards Repatha damage for my remaining symptoms, and the inability to use my dominant hand (and Rheumatoid like symptoms throughout my body) have been confirmed to be caused by the Repatha.
-
Like -
Helpful -
Hug
4 ReactionsHi @rhondaj, I am tagging @donlynn to make sure they see your comment. Donlynn, what has your experience been with Repatha?
Rhondaj, I think I also read that you swim. With the similarities we have in symptoms and what seems to work for each of us I thought I’d pipe in. I spent some time swimming that seemed to really help. Also, have you talked to a pelvic floor therapist at all? There are a lot of muscles, generally a lot going that they understand.
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.
@llynch17056
I cannot take statins as well, like you, same issues. Like you I tried Repatha twice. I really wanted it to work but I had a horrible experience with a long list if extreme side effects leaving me fearful of trying other medications (still recovering after 5 months). If you find something that works speak up, for I am in the same boat as you. I haven't tried a plant based whole food diet yet, that is next on my list. If it lowers my numbers I'll post back. Much luck to you.
T
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1 ReactionI will. My next is terzepatide. I’ve been on it for a bit over a month. I hope it works because the side effects are practically zero.
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