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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 | @dannyandebbie | Aug 7 7:25pm
In reply to @carolgrandma "@dannyandebbie So sorry you are having these problems too. Do you mean, you have been having..." + (show)
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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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@carolgrandma Yes, Actually it was 2 years as of June 2026! It started with flu like symptoms, which I felt okay with. Within two days my shoulders and left foot started to hurt to the point they would wake me out of a sound sleep and standing on my left foot I would end up falling if I moved very fast. Within months it went into my rib cage and lower back along with a constant nausea feeling and eventually into both hip, groin pain and blurred vision. I continue physical therapy bi-weekly and try to stay busy most days. People kept thinking I was having a heart attack when my hip would flare up; a lot like an electrical shock and that is where I am at today. I go in September to see if my bone density test shows any improvement but I refuse Any future medication. I ask myself why I’m even thinking of going to my endocrinologist and only answer is that I want to see if the infusion provides better bone density scores. Does it really matter, not really because future infusion is out of the question. That stuff I feel is like putting poison into my body and the doctor say that there is no way the infusion caused these symptoms. Well, prior I did not have these issues and have only broken my nose once during an automobile accident.

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dannyandebbie | @dannyandebbie | Aug 7 7:31pm
In reply to @carolgrandma "@harborside24 I regret that I didn't research the side effects first. If I had known, I..." + (show)
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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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@carolgrandma I too did the exact same thing, putting all my trust into a doctor that I trusted but he himself really knows little about the potential side effects! Sent me to a rheumatologist who found nothing, referred me to a neurologist, who found nothing and suggested I see my Endocrinologist. I jumper off this down hill spiral to avoid the cost and continued frustration.

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vic83 | @vic83 | Aug 7 10:58pm

Glad I just found this thread. I just saw a local Endocrinologist, in practice a short time, who proposed I switch from Prolia to Reclast because I have been on Prolia for ten years. Three years ago Mayo told me I could stay on Prolia for 5 more years (total 12 years) before switching because Prolia was working, I have had no problems, and it has anti bone tumor properties - and I have lung cancer which can go to the bones. The local endocrinologist was proposing standard guidelines without considering the total patient profile. Not only do I have cancer but I also have pulmonary fibrosis and am on oxygen. It is critical I can continue exercising. So proposing a medication with such a high number of side effects is not the safest solution for me. Fortunately, I had enough information so I would not blindly follow that advice

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daylemaples | @daylemaples | Aug 8 1:19pm

search AI for “pre infusion protocols recommended by major centers to decrease acute phase reactions after Reclast infusion.”
If you have access to a clinical pharmacist ( through your endocrinologist, say , or hospital system) consult with them ahead of your infusion.

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carolgrandma | @carolgrandma | 7 hours ago
In reply to @awfultruth "@carolgrandma I don't have any great answers, but I agree with @dannyandebbie - don't ever take..." + (show)
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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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@awfultruth thank you for responding and the advise

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