Does anyone have a solution to help manage Reclast side effects?

Posted by dingus @dingus, Aug 15, 2024

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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@lee1447

I have just started doing my research on Reclast because that is what the endocrinologist I saw is recommending. She told me at the end of the visit that I have to something. I have had osteoporosis for years. I am in my 70’s.
My DEXA scores have been pretty much the same. I have a healthy diet, use the treadmill 5 days a week, work with resistance bands, do balance exercises, etc. I know my PCP wants me on Reclast because she has seen too many active senior break a hip and end up in a nursing home.

I posted previously that I am now AFIB free after being diagnosed in 2013. I sent a message to the endo doc asking if she could share any current studies on Reclast and AFIB. She gave me a long explanation, but no studies. This doctor was not recommended to me. I just looked at her bio and it sounded like she would listen and be open minded. I go to a large teaching hospital. She is on the faculty there and is a Castle Connolly Top Doctor, for whatever that is worth. I am not switching doctors, because without a recommendation, I would be just pulling another name “out of the hat”.

I am thinking about reaching out to a clinical pharmacist in the endocrinology clinic. That person may be able to help with some of my questIons. Have any of you used this avenue as a resource?

I just told my husband I am sick of doing all this research!!! I am an over thinker! In addition to that, I have an anxiety disorder!! I am taking a “research”break this weekend. In saying that, though, I am sure I will be adding a few more things to my Reclast to do/questions list.

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I visited an endocrinologist pharmacist and he shared that Reclast does not cause long term side effects, such as very sore lower jaw, constantly sore shoulders, left foot sore nausea, especially after 10 months out and recommended I have a second infusion; to which I declined until I get an answer to what is causing this all this pain. Now they want blood work to check my body for inflammation; which I have read the Reclast can cause. Also want to X-ray my shoulders and left foot…..10 months later.
First, do realize as we age we are more prone to fractures! Secondly, a fractured hip doesn’t have to put one into a nursing facility. My mother in-law, 93 years old fell, fractured her hip, was home in a week with physical therapy; she did have dementia so the pain was next to zero. Also! My wife had total bilateral hip replacement with many complications. We later learned that The surgeon that scheduled her for surgery did not preform the surgery, his trainer did; he did the revision once the compressed nerve regenerated nine months later. My wife was also black & blue from head to toe after the bilateral.
Bottom line! Be your own advocate and Never be afraid to ask questions! Good Luck!

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@dannyandebbie

I visited an endocrinologist pharmacist and he shared that Reclast does not cause long term side effects, such as very sore lower jaw, constantly sore shoulders, left foot sore nausea, especially after 10 months out and recommended I have a second infusion; to which I declined until I get an answer to what is causing this all this pain. Now they want blood work to check my body for inflammation; which I have read the Reclast can cause. Also want to X-ray my shoulders and left foot…..10 months later.
First, do realize as we age we are more prone to fractures! Secondly, a fractured hip doesn’t have to put one into a nursing facility. My mother in-law, 93 years old fell, fractured her hip, was home in a week with physical therapy; she did have dementia so the pain was next to zero. Also! My wife had total bilateral hip replacement with many complications. We later learned that The surgeon that scheduled her for surgery did not preform the surgery, his trainer did; he did the revision once the compressed nerve regenerated nine months later. My wife was also black & blue from head to toe after the bilateral.
Bottom line! Be your own advocate and Never be afraid to ask questions! Good Luck!

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I too have posted here many times about my horrible experience with Reclast
While the doctors deny bad side effects, I filed a complaint with FDA.
I just went to the Novartis website. They make the drug. And screen shot their list of serious side effects
I was shocked these are not told. I have Dizziness and irregular heartbeat for 6 months now.My endocrinologist says these are not side effects
Can’t wait to show her this at my appointment on Monday. I’m so upset
I’m not sure my screen shots are legible here. Go to the Novartis website. You will be amazed at the serious side effects listed that you cannot find anywhere else
Can’t wait

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@annar

I too have posted here many times about my horrible experience with Reclast
While the doctors deny bad side effects, I filed a complaint with FDA.
I just went to the Novartis website. They make the drug. And screen shot their list of serious side effects
I was shocked these are not told. I have Dizziness and irregular heartbeat for 6 months now.My endocrinologist says these are not side effects
Can’t wait to show her this at my appointment on Monday. I’m so upset
I’m not sure my screen shots are legible here. Go to the Novartis website. You will be amazed at the serious side effects listed that you cannot find anywhere else
Can’t wait

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I was able to read! It is awful and yet they deny any long term side effects!

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@annar

I too have posted here many times about my horrible experience with Reclast
While the doctors deny bad side effects, I filed a complaint with FDA.
I just went to the Novartis website. They make the drug. And screen shot their list of serious side effects
I was shocked these are not told. I have Dizziness and irregular heartbeat for 6 months now.My endocrinologist says these are not side effects
Can’t wait to show her this at my appointment on Monday. I’m so upset
I’m not sure my screen shots are legible here. Go to the Novartis website. You will be amazed at the serious side effects listed that you cannot find anywhere else
Can’t wait

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I can't wait either for the full report of your visit. I hope you record and then transcribe.

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@dannyandebbie

I was able to read! It is awful and yet they deny any long term side effects!

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Now I feel silly. I went to the Novartis website again and realized it led to a link that I didn’t realize is Drugs.com
That is actually where the list came from
Nevertheless, I believe it because too many of us have had horrible side effects and I’m still going to show it to my endocrinologist
I just want to be fully transparent. I’m an honest person

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@reclastsuferer

Thanks so much
I try to stay positive but is hard when I had to stop all activities and confined to a chair
I will try physical therapy
Thanks so much

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I hope that you are feeling better. Please send us an update so we know how you are doing.
Wishing you the best !!!!

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@hlp123

I hope that you are feeling better. Please send us an update so we know how you are doing.
Wishing you the best !!!!

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It has finally after two months gotten about 50% better
I hope I continue to improve on the pain but I am terrified of what is next for the coming year
Don’t know what to do

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@reclastsuferer

It has finally after two months gotten about 50% better
I hope I continue to improve on the pain but I am terrified of what is next for the coming year
Don’t know what to do

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My shoulders are slowly feeling better but still wake me at times at night. The more I use my arm the less they bother throughout my day. Relaxing seems to make them more painful. My left foot just randomly hurts and seems to burn until I get off my foot for a period of time; 20-30 minutes; hopefully the more I walk on it the time between pain extends to allow me to work more without pain.

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I thought it was me. I had my first Reclast infusion in February of 2025. I had no flu symptoms afterwards but after about a month or two I started having what I would describe as bone pain in both arms, my hands, and shoulder. I never had anything like this before the infusion. I’m not so sure I would have another infusion for fear of having repeat side effects. My doctor never told me this would happen and when I reported it he said that yes bone pain could occur within a month and a half but would only last about three weeks. Not so. It’s May and I still have the discomfort intermittently. Great! Very discouraging to be in such pain.

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@heartfelt70

I did bone coach when I had recuperated from the infusion. I still use most of the principles. I think I do better on my own since the program. I get his ads for the line of supplements he uses. Doctors make $ everytime we take their meds. Have you learned about the "bone" that is laid down after a biophisphinate? This "bone" is like chalk and crumbles. It is dangerous stuff.
I am not going to take it again!

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How long did it take you to recover from the infusion?

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