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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Profile picture for nycmusic @nycmusic

@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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@nycmusic Hi, I have had at 3 infusions of Reclast. I guess I've been lucky, and have never had any side affects/reactions. I was diagnosed with Osteoporosis, but recently was told it hasn't done a thing fore me. Now, I need a hip replacement. My endocrinologist wants me to start taking Prolia. I am a kidney transplant patient, so I need to discuss this with him first. Has anyone taken Prolia and has it helped? Thank you

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auntymimi, https://pubmed.ncbi.nlm.nih.gov/39871033/
Prolia also has a good safety profile with kidney transplant patients. But you were on an antiresorptive for three years "that hasn't done a thing" for you. You might discuss this with your endocrinologist. You might also insist on bone markers to protect yourself against potentially harmful medications that aren't effective for you.
Forteo helps to integrate hardware used in hip replacement, and speeds healing. Be sure and ask the endocrinologist what medication would follow Prolia.
Best wishes for successful hip replacement.

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I had my first Reclape infusion two days ago. I live with severe fibromyalgia and Myfascial pain disorder. I will never due this again! My pain everyday ranges from a 6.5 to 8 . Within 12 hours my pain raised to a 9. It was in my ankles, feet , sheen bones, entire upper legs, hips and hands. Before my doctor said I would have a little joint pain. Are you kidding me?? I am so upset. What’s worse is the way chronic pain patients are treated, he only offered additional Tylenol. I’m sending him my hospital bill and he is fired! Think twice chronic pain warriors before you do this. Plus, were is the warning on Reclast site for those suffering in chronic pain?

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shudson, sorry you are having this pain. Some people have it for a week or so and then it goes away. Others are not so lucky. You might ask your doctor for a 5 day medrol pack. It is thought that the immune system can over react to the flood of zoledronate. No one wants to prescribe steroid to an osteoporosis patient, but I'm given to understand that the ongoing inflammation is more damage to bone than this short course of steroid. Around 30% of individuals taking Reclast have this painful reaction.
I suspect that anyone with autoimmune systems should avoid Reclast or insist on a lower dose with longer infusion time.
Did they do anything for you at the hospital?

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Profile picture for shudson @shudson

I had my first Reclape infusion two days ago. I live with severe fibromyalgia and Myfascial pain disorder. I will never due this again! My pain everyday ranges from a 6.5 to 8 . Within 12 hours my pain raised to a 9. It was in my ankles, feet , sheen bones, entire upper legs, hips and hands. Before my doctor said I would have a little joint pain. Are you kidding me?? I am so upset. What’s worse is the way chronic pain patients are treated, he only offered additional Tylenol. I’m sending him my hospital bill and he is fired! Think twice chronic pain warriors before you do this. Plus, were is the warning on Reclast site for those suffering in chronic pain?

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@shudson hopefully you are starting to feel better! Once it’s in your system, I’m finding, It’s there for a long time. Do not mean to discourage but I’ve been 22 months, a little better but far from where I was before the infusion!

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Profile picture for heartfelt70 @heartfelt70

I had the same side effects. Several times I thought I was going to die. I hurt all over as well, but never got dizzy. I am functional,but I know I would be better had I not had Reclast!
I ordered chlorophyll. It is mint flavored. Mix with water and drink. It cleans cells and works on whole body. I use a heating pad often. I had my infusion about three years ago. It was a poison to my body and I will never take it again.

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@heartfelt70 Hello, my name is Raelene. I received the reclast
Infusion on December 4th of last year. I had severe pain in my shoulder and legs. To the point were I couldn’t take it anymore. After around 2 months the pain in my shoulder went away but stayed in my hip. Two months later I have been in extreme pain in my shoulders again. I feel I can’t take it anymore. I have been searching the internet for law
Suits for REClast . I feel no person should have to go though this pain . I contact FDA they sent me a paper to fill out. I really want to find I lawyer. I cannot take this pain anymore. This company should be accountable for this and not get away with it. Thank you Raelene

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Profile picture for lkhender @lkhender

@windyshores thanks for providing the Medwatch website. I have now reported my reaction and side effects. Hopefully this will help if we all report.

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@lkhender I just mailed my information to Medwatch yesterday. My quality of life has dramatically changed since Reclast.

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Profile picture for terrietfp @terrietfp

@lkhender I just mailed my information to Medwatch yesterday. My quality of life has dramatically changed since Reclast.

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@terrietfp I too can say my life has changed, hopefully not forever! 22 months ago I had the Reclast infusion and have paid for it daily since! I go to physical therapy biweekly, preform what exercise I can and try hard to stay as busy as my body will let me. I find staying busy and try to focus more on what I am doing and less on the aches and pains, not to mention nausea feelings a lot. I’ve managed to maintain my weight to a degree. I retired two years ago and had no real issues; since the Reclast pain is daily. I do hope the day comes where I can do the things I use to do! Both shoulders, my left foot and both hands were / are affected and more recently inflammation in my left eye! Hopefully we will all get over this infusion! I did report to FDA, never heard back! I’m a male, 5’2” , 119 weight in my late 60’s; hopefully I still have a lot to offer in life! Best of luck to you

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Profile picture for dannyandebbie @dannyandebbie

@terrietfp I too can say my life has changed, hopefully not forever! 22 months ago I had the Reclast infusion and have paid for it daily since! I go to physical therapy biweekly, preform what exercise I can and try hard to stay as busy as my body will let me. I find staying busy and try to focus more on what I am doing and less on the aches and pains, not to mention nausea feelings a lot. I’ve managed to maintain my weight to a degree. I retired two years ago and had no real issues; since the Reclast pain is daily. I do hope the day comes where I can do the things I use to do! Both shoulders, my left foot and both hands were / are affected and more recently inflammation in my left eye! Hopefully we will all get over this infusion! I did report to FDA, never heard back! I’m a male, 5’2” , 119 weight in my late 60’s; hopefully I still have a lot to offer in life! Best of luck to you

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@dannyandebbie Thank you for responding. I want to try physical therapy, but I do not know what to ask the doctor to put on the script. It will be a year since I had my infusion on 8/26. Before this, I gardened, baked sourdough bread, and made desserts. I have gained weight, and the tendons in both feet and hands have become damaged. We also got a puppy before my infusion, and she is a year old now, but still quite active. I have joined 2 book clubs at our public library, which has helped. I long for the day when I can take long walks, garden, and bake again. 22 months is a long time. I've also had cardio issues and a lot of dizziness. I'm still positive that I will get better.

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Profile picture for raelenewilma @raelenewilma

@heartfelt70 Hello, my name is Raelene. I received the reclast
Infusion on December 4th of last year. I had severe pain in my shoulder and legs. To the point were I couldn’t take it anymore. After around 2 months the pain in my shoulder went away but stayed in my hip. Two months later I have been in extreme pain in my shoulders again. I feel I can’t take it anymore. I have been searching the internet for law
Suits for REClast . I feel no person should have to go though this pain . I contact FDA they sent me a paper to fill out. I really want to find I lawyer. I cannot take this pain anymore. This company should be accountable for this and not get away with it. Thank you Raelene

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@raelenewilma I agree with you on everything you said. Had mine in February 2025 and also have many side effects including pain in all of my joints and muscles. My life has changed for the worst. I want to sue someone. I want to warn other people. I just want my health back. Let me know what you do.

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