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 carolgrandma @carolgrandma

I had my first of three Reclast infusions on June 21, 2026. I wish I'd never had it. A first I had flu like symptons for a week, that I could deal with. Then the joint pain started. At first it was my rt knee and left hip . but then it became all my joints. My shoulders, neck, knees, hips and feet. Now 6 weeks later I'm still in constant pain, sometimes very severe. So I'm wondering how long this will last? Does Reclast have any suggestions to relieve it. I can't seem to find any answers from my doctors. is there any way of getting an answer from the drug manufacturers. They seem to keep themselves hidden. I was fine, able to walk and do my daily routine, but now I can't. If I'm able to walk, it is very slowly because of the pain.

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@carolgrandma I don't have any great answers, but I agree with @dannyandebbie - don't ever take Reclast again. The flu like symptoms happen to roughly a third of those who take Reclast on their first dose. They can be very unpleasant but usually are gone in a week or less. The big problem in my opinion is the unknown number of people who get hit like you have, with severe life altering symptoms of unknown duration. This problem may not affect a large percentage of those taking Reclast (no studies on how often these long term problems occur) but the severity of the symptoms and the lack of warning that this could occur is really disturbing.

I do not believe the doctors or drug companies know what is happening with these long-term affects of Reclast. And of course they often just deny them.

As to what to do now that this has happened, I would suggest you try multiple AI programs to get general information. That can describe a number of possible things that might be going on and though I know the AI programs I'm experimenting with have some significant errors at times, they can be useful if you don't take what they report as the gospel. Consulting AI will give no definite answers but it should give a useful broad picture that might help in talking with doctors.

I think the world of alternative/holistic medicine might have some possibilities, but I know of nothing definite. I would look there also if I were in your situation.

I also think the standard dose of Reclast is just too strong. See my post "Are we overdosing Reclast".

And finally others have suggested for prevention: hydrating beforehand, Tylenol or similar beforehand and after, anti-histamines beforehand and after and so on. As far as I know there is no clear evidence that these strategies work. After all two thirds of those getting Reclast don't have any significant symptoms anyway. If they do actually work for those acute flu like symptoms there is still no evidence that they prevent the long term side effects. I'm not arguing they don't work, just saying it's not at all clear that they do.

Also suggested is to request (and fight for) a longer (slower) infusion of 30-45 minutes or even longer.
There is evidence that the slow infusion can help prevent the kidney damage that Reclast can potentially cause. That one suggestion I would follow for sure if I ever felt invulnerable enough to try Reclast.

Good luck to you!

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The first time I took it no big side effects. Then several days later I noticed multiple blisters on both arms. I am not sure it was from the Reclast infusion. If anyone else has experienced this please let me know.
It took several months to get rig of them and a olot of attention on my part.
Looking forward a response either way.
Thanks

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Profile picture for awfultruth @awfultruth

@carolgrandma I don't have any great answers, but I agree with @dannyandebbie - don't ever take Reclast again. The flu like symptoms happen to roughly a third of those who take Reclast on their first dose. They can be very unpleasant but usually are gone in a week or less. The big problem in my opinion is the unknown number of people who get hit like you have, with severe life altering symptoms of unknown duration. This problem may not affect a large percentage of those taking Reclast (no studies on how often these long term problems occur) but the severity of the symptoms and the lack of warning that this could occur is really disturbing.

I do not believe the doctors or drug companies know what is happening with these long-term affects of Reclast. And of course they often just deny them.

As to what to do now that this has happened, I would suggest you try multiple AI programs to get general information. That can describe a number of possible things that might be going on and though I know the AI programs I'm experimenting with have some significant errors at times, they can be useful if you don't take what they report as the gospel. Consulting AI will give no definite answers but it should give a useful broad picture that might help in talking with doctors.

I think the world of alternative/holistic medicine might have some possibilities, but I know of nothing definite. I would look there also if I were in your situation.

I also think the standard dose of Reclast is just too strong. See my post "Are we overdosing Reclast".

And finally others have suggested for prevention: hydrating beforehand, Tylenol or similar beforehand and after, anti-histamines beforehand and after and so on. As far as I know there is no clear evidence that these strategies work. After all two thirds of those getting Reclast don't have any significant symptoms anyway. If they do actually work for those acute flu like symptoms there is still no evidence that they prevent the long term side effects. I'm not arguing they don't work, just saying it's not at all clear that they do.

Also suggested is to request (and fight for) a longer (slower) infusion of 30-45 minutes or even longer.
There is evidence that the slow infusion can help prevent the kidney damage that Reclast can potentially cause. That one suggestion I would follow for sure if I ever felt invulnerable enough to try Reclast.

Good luck to you!

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@awfultruth Thanks for your inciteful answer. I didn't realize I would have an option to have the infusion at a slower rate. they did mine in less than 15 minutes. then had me stay another 30 minutes to see how I reacted. I called the dept that did the infusion and they said that I wasn't their patient and to talk to my referring Dr. I called my Dr and they said to call the infusion dept. A big run around. But I don't plan on having another Reclast infusion for sure. I have been diagnosed Osteoporosis after breaking my elbow, my shoulder, my hip and my ankle. I've been conscientious about taking Calcium, Vitamin D, and Magnesium, and try to walk as much as possible. But now I have to wait till and if I get better.

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Profile picture for jcl75 @jcl75

@dannyandebbie @carolgrandma

I too had a serious reaction to an infusion that started 3-4 days after. The medication was Reclast for osteopenia. I was hospitalized and diagnosed with Giant Cell Arteritis wth
permanent partial vision loss in one eye. There are recent studies looking into the connection between GCA and Reclast. I did report this to the FDA

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@jcl75 Oh no, so sorry to hear about your vision loss. It seems like the drugs they offer us are far worse than the medical problem we had to begin with.

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Profile picture for gale2hankins @gale2hankins

@carolgrandma I am experiencing similar effects that I can only attribute to Reclast - a week of flu like symptoms followed by constant pain in my joints from head to toe. Taking ibuprofen or acetaminophen has little to no effect. My doctor says this will subside over time, but I will refuse this drug in the future due to the negative impact it is having on the quality of my day to day life. I have also had increased hair loss well beyond what is normal for me. Had I known this would be my daily battle before agreeing to the infusion, I would have refused it. Best wishes for all who are experiencing negative effects.

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@gale2hankins So sorry you're going through this too. I too have noticed more hair loss. They should warn people of these serious side effects. Instead I found out after having the infusion by checking online to see why. And then it just says these are possible, but not normal. they told me not to take Ibuprofen because of the effects on my kidneys, so I didn't. My primary care Dr gave my Oxycodone, but it doesn't help either, so I don't take it.

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Profile picture for dannyandebbie @dannyandebbie

@carolgrandma I see that you expressed, “ first of three”. It is my suggestion that you decline any additional Reclast infusions unless your endocrinologist can provide you with the answer you seek! I am a 69 year old male who received his first and last infusion two plus years ago. Much like you, I was quite physical and had your normal aches and pains. After the infusion I too had flu like symptoms at first and after about a week, bang ‼️ shoulders, left foot, vision, lower back, hips, weak muscles and nausea to mention just a few. My Endocrinologist said, “ this is not from the infusion “ and suggested I see a rheumatologist, who suggested I see a Neurologist who suggested I see my Endocrinologist. No one can explain my symptoms! I’ve been going to physical therapy bi-weekly since my infusion. Three suggestions! Look up Reclast infusion and potential side effects, contact FDA to report your symptoms and take care of yourself! I apologize for not having better answers and should you find a solution I would truly appreciate your feed back!

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@dannyandebbie So sorry you are having these problems too. Do you mean, you have been having the pain for over 2 years?

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Profile picture for harborside24 @harborside24

@carolgrandma May I ask how you prepared for the infusion?

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@harborside24 I regret that I didn't research the side effects first. If I had known, I would not have had the infusion. I just went to the appointment unprepared, and trusting that this would help my bone loss.

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Profile picture for debafitz @debafitz

I’m about to start first reclast in about a mo. I just stopped Evenity for 12 mo. After reading most posts on here it has me very nervous to take. Has anyone had a good experience? I was told if I don’t continue treatment I will lose all that was gained this past year. I can’t take oral pills. Please help!!!!

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@debafitz If I had known what Reclast would do to me, I would never have had it. But it looks like some may have been helped, so it would be a gamble.

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Profile picture for gravity3 @gravity3

@debafitz

May I ask how old you are?

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@gravity3 I am almost 80. Up till now, I've been able to walk and do all my household chores and gardening without problems.

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I haven't had the Reclast infusion after 11 months on Evenity. I had to have heart surgery, so I was afraid of the side effects. It has now been four months after finishing the Evenity. I am due to have Mohs surgery next week, so now afraid of having Reclast side effects prior to that procedure. It was put off due to the heart surgery. I wish I had never started the Evenity, my endocrinologist did not tell me I would have to have Reclast. I am losing height. Am I more apt to get osteonecrosis of the jaw with or without the Reclast?

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