Reclast side effects
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 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.
@njx58 we crossposted!
@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
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.
@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.
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.
@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.
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.
Pills or infusion?
Infusion