Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

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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@dingus

Windyshores So sorry to hear about your GERD. But with everything I've read on these posts, it just seems like Reclast is being pushed hard by Big Pharma and in turn by doctors. With all the pharmaceutical companies in the world, and more and more Baby Boomers entering the golden age of bad bones, surely they can come up with a drug that doesn't have all these horrible side effects.

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@dingus are you referring to Big Pharma pushing Reclast as an intial drug or as follow up? Insurance companies want us to use bisphosphonates or Prolia because they are cheaper, and many PCP's will say those are "front line." Even if they did prescribe, often insurance won't cover the strong bone building meds unless scores are bad and/or there are fractures.

Back in 2005 my PCP wanted me on Fosamax due to osteopenia. Most doctors have stopped doing that, I believe, thankfully.

The anabolics should usually be used first unless scores are pretty high. The real issue is the lack of long term protocols which now only depend on Reclast or Fosamax "locking in gains."

ps Every time there is a new drug, it is the new miracle, then the problems arise. Leder says there are no new meds in the pipeline.

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@njx58

The bone drugs do different things, though. You have to take *something* to prevent bone loss after using the other meds. There aren't many choices for that.

Everyone here is between a rock and a hard place because there's no silver bullet drug for osteoporosis. You cross your fingers and hope for little or no side effects.

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@njx58 we crossposted!

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@windyshores

@kell4042 and @gently I have never seen this timeline before, as posted by @gently
" Some 30% have a miserable flu-like response that lasts for weeks, before resolving gradually. "
Three weeks is out of the usual timeline that I have read about for that acute phase reaction (APR). It is possible. But Reclast can have longer term side effects that are not part of that acute phase reaction, which I personally distinguish from the APR. I didn't mind 5 days of fever and myalgia (even on 20% dose that happened) - it's transient and less likely to happen again- but of more concern are effects over the next weeks and months for some few of us. Many do fine. (I am having GI effects, and increased tinnitus.) If you are having a longer acute phase reaction, that would be better because the symptoms do tend to disappear. Let us know!

Of more concern is why you @kell4042 were put on this in the first place. It seems your DEXA is low enough to qualify for an anabolic like Tymlos, Forteo or Evenity. Is there an insurance problem? The thing is, Reclast renders these anabolics less effective and many of us do Relcast after the others to "lock in gains."

A few things that came up on google:

https://www.ccjm.org/content/ccjom/85/9/675.full.pdf This one says APR dissipates in one week.

"Bisphosphonates, especially intravenous zoledronic acid, often cause influenza-like symptoms such as severe musculoskeletal pain, fever, headache, malaise, and fatigue, sometimes accompanied by nausea, vomiting, and diarrhea. As many as 30% of patients experience these symptoms, which are usually transient, last up to 1 week, and, in most patients, only rarely recur with subsequent infusions. "

Some statistics from that same article concerning Reclast only (see the full article):

"42.4% of the zoledronic acid group experienced symptoms that could be attributed to an acute-phase reaction after the first infusion.....most resolved within 1 week."

https://www.aafp.org/pubs/afp/issues/2008/0815/p508.html This one does say up to two weeks, which is longer than what I usually see.

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@windyshores That is an excellent comment. It is really important that we make a distinction between those very common flu-like acute phase reaction (APR)s which go away generally in 3-5 days and possible long term side effects which are potentially life changing.
It is acknowledged that the flu like reaction happens in 30-40% of patients. What is not readily acknowledged is the possible long term effects that are seemingly not related to the flu like reactions that occur within a few days of the infusion. These worrisome long term problems can seemingly occur any time after the infusion, not just in the first few days. That makes them harder to study, harder to show up in the drug trials, and difficult to attribute to a definite cause. I caution against just assuming it's Reclast because you had an infusion 2 weeks ago. It may be but you don't want to overlook other possible causes and perhaps miss something else happening to you that needs addressing.
I have never taken Reclast, I'm just looking at studies and bone med talks and user groups. From that I have no idea how frequently these long term side effects may be happening. I wish we knew!

And just to help us all appreciate how complex life can be, there is a study that indicates that those who have the flu like reaction to Reclast are less likely to fracture than those who do not have that reaction. And that leads to speculation that maybe folks shouldn't take all that Tylenol and Claritin, etc to prevent those flu like reactions. Please note I'm not making any recommendations here on this particular tangent. It does look like properly done research done by respected researchers but they do not claim it is conclusive.
https://onlinelibrary.wiley.com/doi/full/10.1111/joim.13354

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@windyshores

@bmrus for me Tymlos was the least scary because I could start at a low dose and move up, giving my body a chance to adjust. It is short acting so it is out of the body quickly too. That's just me. Others had a good experience with other meds.

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I developed a large kidney stone while taking Tymlos. This is a known possible side effect. I told the NP that I have a strong family history of kidney stones, but she just blew it off. When I started having pain, she denied that it could be a kidney stone because the pain was not in the location that pain from a kidney stone would usually be. During the next 9 months, I saw my gynecologist, my gastroenterologist, my PCP and a urologist. Even the urologist refused to believe it was a kidney stone. I finally ended up in the ER with severe pain. I had a very large stone - too large to ever be able to even get out of my kidney on its own. I had a surgical procedure to place a stent in my ureter. I lived with that miserable stent for a month before they performed surgery to break up the stone and remove it. After that, I had to have the stent for another 2 weeks. It was almost a year of misery.
A friend of my Mom was on Fosamax. She developed leukemia, and while undergoing chemo, her oral surgeon discovered she had jaw necrosis and needed surgery right away. She couldn't have surgery due to her leukemia and chemo. She has since passed away.
I will never take any of these drugs again. I will do what I can otherwise, but in my opinion, these drugs are poison.

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@lylii

I developed a large kidney stone while taking Tymlos. This is a known possible side effect. I told the NP that I have a strong family history of kidney stones, but she just blew it off. When I started having pain, she denied that it could be a kidney stone because the pain was not in the location that pain from a kidney stone would usually be. During the next 9 months, I saw my gynecologist, my gastroenterologist, my PCP and a urologist. Even the urologist refused to believe it was a kidney stone. I finally ended up in the ER with severe pain. I had a very large stone - too large to ever be able to even get out of my kidney on its own. I had a surgical procedure to place a stent in my ureter. I lived with that miserable stent for a month before they performed surgery to break up the stone and remove it. After that, I had to have the stent for another 2 weeks. It was almost a year of misery.
A friend of my Mom was on Fosamax. She developed leukemia, and while undergoing chemo, her oral surgeon discovered she had jaw necrosis and needed surgery right away. She couldn't have surgery due to her leukemia and chemo. She has since passed away.
I will never take any of these drugs again. I will do what I can otherwise, but in my opinion, these drugs are poison.

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@lylii for me it is drug side effects vs fracture side effects (I have 7). Fractures were excruciating and permanently disabling. I cannot afford more. I try to minimize the effects of medications by altering doses or timing in cooperation with my doctor. I have kidney disease, afib and lupus which complicate things. I understand your position and pray you don't fracture.

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I understand - sometimes we have no options. I hope you respond well to the medication and have minimal side effects. I wish you all the best - you have a lot of things to deal with.

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@lylii

I developed a large kidney stone while taking Tymlos. This is a known possible side effect. I told the NP that I have a strong family history of kidney stones, but she just blew it off. When I started having pain, she denied that it could be a kidney stone because the pain was not in the location that pain from a kidney stone would usually be. During the next 9 months, I saw my gynecologist, my gastroenterologist, my PCP and a urologist. Even the urologist refused to believe it was a kidney stone. I finally ended up in the ER with severe pain. I had a very large stone - too large to ever be able to even get out of my kidney on its own. I had a surgical procedure to place a stent in my ureter. I lived with that miserable stent for a month before they performed surgery to break up the stone and remove it. After that, I had to have the stent for another 2 weeks. It was almost a year of misery.
A friend of my Mom was on Fosamax. She developed leukemia, and while undergoing chemo, her oral surgeon discovered she had jaw necrosis and needed surgery right away. She couldn't have surgery due to her leukemia and chemo. She has since passed away.
I will never take any of these drugs again. I will do what I can otherwise, but in my opinion, these drugs are poison.

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@lylii,
thank you for this terrifying post. Four physicians missed the stone even with your direction. It cautions all of us to trust ourselves and continually look beyond the answers we are given.
I'm sorry for your experience and pray you never fracture.

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@jonijean

My doc is pushing Reclast. I have expressed my fear for the orals now the Reclast. She is dismissing as incorrect ALL of my concerns. I might be opening a can of worms, but has anyone done the FRAX test? Go online and check it out. I did it and have only 0.1% chance of having a hip fracture in the next 10 years. I am 70. I have fallen/slipped on ice twice and a large pine cone once in the last 3 years and no break or crack. She said I was lucky. Maybe so, but I just want to try other ways to increase my bone density. She doesn't address ANY other ways to help, saying they won't help. Anyone?

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Find another Dr.
I did Reclast in April and had statistically significant increase in bone density by September. I have had no side effects from it. Blessings to you.

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@neshomaker123

Find another Dr.
I did Reclast in April and had statistically significant increase in bone density by September. I have had no side effects from it. Blessings to you.

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Pills or infusion?

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@jonijean

Pills or infusion?

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Infusion

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