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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dannyandebbie,
thank you for all of your posts during this terrible experience.
It's heartening that you are nearing the end of the torture and will finally be able to enjoy retirement.
I hope you keep posting.

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Profile picture for gently @gently

dannyandebbie,
thank you for all of your posts during this terrible experience.
It's heartening that you are nearing the end of the torture and will finally be able to enjoy retirement.
I hope you keep posting.

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@gently I’m in hopes that I am near the end! Each day is a new challenge. One day little symptoms and the next my shoulders and/or left foot just slow me down to sometimes a stop but I do my best to just keep pushing. The latest is this increased burning sensation in my groin area in addition to constant shoulder pain / lameness, left foot burning. It sucks but one day at a time!

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Profile picture for maggiegrim @maggiegrim

@normajean77 I got a Reclast infusion 11 months ago when I was 71, and had a VERY serious reaction. I will never do this again. I continue to have chronic side effects, the worst of which are recurring kidney pain, and serious joint, muscle, and bone pain. I also get recurring headaches, muscle cramps, vertigo, random whole body itching, etc. Like most everyone else, my PC doctor reacted with skepticism about it being caused by the Reclast, but since I was completely 100% healthy with NO issues when I got the infusion, and these symptoms hit like a ton of bricks 16 hours after the infusion, and have continued chronically ever since, I have zero doubts. I have looked, and I can find no real help for this. Studies have been done (posted on the Mayo Clinic site) showing the percentage of time these side effects occur, but I haven't found any answers for when they do. I was looking for how long it stays in your system, for how long this will continue to plague me. So far, here is the only answer I got, and it's not good:
"Reclast (zoledronic acid) stays in your system for a very long time because it binds to bone, with studies showing its effects and presence detectable in bone for many years, even up to a decade or more after treatment stops, though it's quickly cleared from the blood. While the drug's direct effects in the bloodstream are short-lived, its integration into bone means it can continue to work or be released slowly over years, influencing bone remodeling.
How it Works & Stays in Your Body
1. Rapid Blood Clearance: After an infusion, Reclast quickly leaves the bloodstream.
2. Binds to Bone: About half of the drug strongly attaches to bone mineral, effectively becoming part of the bone structure.
3. Long-Term Retention: Because it's incorporated into the bone matrix, it's protected from metabolism and can be released very slowly over many years.
Implications of Long Retention
• Extended Action:
This long retention means Reclast continues to slow down bone breakdown (osteoclast activity) for a long time, providing benefits long after the infusion.
• Drug Holidays:
Doctors may recommend "drug holidays" (stopping treatment) after several years (3-5 years) because the drug stays in the bones, allowing for a break while still getting benefits and reducing risks of serious side effects.
• Detectability:
Other bisphosphonates have been found in urine for years after treatment cessation, showing how long they can persist in the body.
In essence, while you don't feel the drug days after the infusion, its presence and action in your skeleton can last for years."

I am angry that I let my doctor talk me into the infusion, I am angry that I wasn't told or given a medical sheet that listed the potential issues prior to the infusion, I am angry that the drug company doesn't better inform the doctors, but I am mostly angry at myself --- I knew better than to let them put this serious drug in me, but in a moment of weakness, I caved and said okay -- something I will forever regret.

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@maggiegrim thank you for sharing this! Gives me something more to study; I do hope it is not life long!

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Profile picture for jenkev74 @jenkev74

I had Calcium count 10.5. Had Reclast infusion About week later. A month later still in extreme pain. One of my doctors said I now have PMR.

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@jenkev74 Sorry to hear about your experience with Reclast. They want me to to it. Have you gotten any better now? And, what is PMR, if I may?

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I took my first Reclast infusion in November 2025 felt like I had the flu for about 3 days. Approximately a week later I started have the most intense femur pain. I could barely walk. I had a total hip replacement about 12 years ago at the age of 40. I saw my orthopedist because I was out of my mind with pain. Come to find out I had a huge bone growth at the end of my implant which he believes is causing my issue. He had said he could change out my. Prosthesis which would entail windowing open my femur and chiseling out the implant and doing a cage to repair the femur. This sounds horrible but I’ve been in such pain what do you do? I hate pain medicine but the surgery sounds horrible. Sure wish I knew what I know now about Reclast. I wonder what percentage of patients have this horrible side effect?

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Profile picture for ivstarter39 @ivstarter39

I took my first Reclast infusion in November 2025 felt like I had the flu for about 3 days. Approximately a week later I started have the most intense femur pain. I could barely walk. I had a total hip replacement about 12 years ago at the age of 40. I saw my orthopedist because I was out of my mind with pain. Come to find out I had a huge bone growth at the end of my implant which he believes is causing my issue. He had said he could change out my. Prosthesis which would entail windowing open my femur and chiseling out the implant and doing a cage to repair the femur. This sounds horrible but I’ve been in such pain what do you do? I hate pain medicine but the surgery sounds horrible. Sure wish I knew what I know now about Reclast. I wonder what percentage of patients have this horrible side effect?

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@ivstarter39 not a scientific response, but from reading posts here, Reclast is not an easy drug for many….and the side effects can last quite awhile…one wishes there was a test docs could do to see how well a patient might do…there are genetic and enzyme tests that oncologists use before initiating certain treatments and they are largely helpful.

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Profile picture for ivstarter39 @ivstarter39

I took my first Reclast infusion in November 2025 felt like I had the flu for about 3 days. Approximately a week later I started have the most intense femur pain. I could barely walk. I had a total hip replacement about 12 years ago at the age of 40. I saw my orthopedist because I was out of my mind with pain. Come to find out I had a huge bone growth at the end of my implant which he believes is causing my issue. He had said he could change out my. Prosthesis which would entail windowing open my femur and chiseling out the implant and doing a cage to repair the femur. This sounds horrible but I’ve been in such pain what do you do? I hate pain medicine but the surgery sounds horrible. Sure wish I knew what I know now about Reclast. I wonder what percentage of patients have this horrible side effect?

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@ivstarter39

How was the determination made that the last was responsible?

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Profile picture for ivstarter39 @ivstarter39

I took my first Reclast infusion in November 2025 felt like I had the flu for about 3 days. Approximately a week later I started have the most intense femur pain. I could barely walk. I had a total hip replacement about 12 years ago at the age of 40. I saw my orthopedist because I was out of my mind with pain. Come to find out I had a huge bone growth at the end of my implant which he believes is causing my issue. He had said he could change out my. Prosthesis which would entail windowing open my femur and chiseling out the implant and doing a cage to repair the femur. This sounds horrible but I’ve been in such pain what do you do? I hate pain medicine but the surgery sounds horrible. Sure wish I knew what I know now about Reclast. I wonder what percentage of patients have this horrible side effect?

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@ivstarter39 I wonder how many cases as well! Reclast has changed my life and currently, 19 months out and still have some really bad side effects. Had I known this would happen I never would have received the infusion

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I just had a reclast infusion Jan 29 and my left shoulder and arm feel like it is broken and is so painful. What do I do about the pain.can’t move it or lift it. Mostly using heat pad and Tylenol. I can hardly walk or move. I am 69

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kcurtiss, call your doctor tomorrow and let them know. You might ask for a 5 day prednisolone tapering pack. Yes, steroid, but I've read that the inflammatory response may be harder on your bones than the five day prednisolone. Your doctor or you yourself may want to wait for a week to see if the cytokine reaction ebbs on its own. I'm pretty sure I would not want to wait. Sometimes cytokine responses are self generating.
Some say exercise helps mitigate the pain but that's impossible it's too painful to move. Some few end up in hospital with IV steroid. Steriod is really the only thing to stop a recycling cytokine reaction. You might wake up Monday feeling better. Praying.

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