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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@paula630

Had my 3rd Reclast infusion in August. 2024. Never had side effects other than minor ache/headache within 3-5 days after. Pls note: I was given this dosage 6 mos early because I fell on ice in January and broke my wrist, so was told I should have a booster. Three weeks later, I started experiencing bone/joint pain - debilitating joint pain. Literally, had to fold myself out of bed, car seats, plane rides. And all over - from feet to hips, shoulders, neck, back fingers and toes!
My bone specialist said "usually only get side effects within first few days; check with your PCP." I waited a few mos., (there were some days of less pain here and there), then saw my PCP who ran tests (even Lyme and auto-immune) - all negative. Last week, actually had a few days were pain was much less; I was hopeful. Thursday it started again - pain level 9 out of 10 (and I have very good pain tolerance)
Yesterday, I wrote to my Bone specialist and sent all the tests. I asked if it could be bone growth (maybe wrong term). She replied "Reclast is not a bone grower and very inert after 2 das. The fact that you tolerated 2 prior infusions concerns me that this is a red herring..." So, she ordered me several tests to have done this week.
The fact that this started 3 wks after a "booster" infusion, forgot to mention jaw clicking which I never had, makes me feel this is related. Hoping it's nothing else -- stay tuned.

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Thanks, Paula, for those comments. Please give us an update when you get the results from the tests. Sounds so much like my experience. And the doctors comment that it's "inert in 2 das." Really??? I've been dealing with the side effects for nearly two years.

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@paula630 I thought Reclast increases bone density. It seems like semantics on the part of the doc who said it doesn't "grow bone." Right? Yes, it is not anabolic. It is anti-resorptive and increases density by lowering turnover. As I am sure you know.

from drugs.com "After treatment with Reclast, BMD increased by 11% from baseline after one year of treatment and by 20.7% from baseline after two years of treatment."

Here is what the doc may have been referring to:
ExcretionUrine (39% ± 16% as unchanged drug) within 24 hours; feces (< 3%)
Half-Life Elimination Triphasic; Terminal: 146 hours
so yeah techically it is "eliminated" relatively quickly but stays around for a long time in bone...

So technically Reclast is "elminated" fairly quickly (via urine) but remains in bone for years and is slowly released. Again the doctor's comments seem like semantics.
From drugs.com:
Zoledronic acid, which is the active ingredient in Reclast, can remain in your body for weeks or years after your last dose1. Reclast is an effective treatment and should improve bone density for around 2-3 years after a person stops treatment2. Side effects such as bone, joint, or musculoskeletal pain may occur days, months, or years after starting therapy3.

I have read somewhere that it can last 10 years. I am not sure. Ask the doc!

I have been concerned about osteoarthritis and bone spurs getting worse on Reclast and especially Evenity but not sure that is studied. Please share if you find anything. Time will tell. Most of the drug info sites mention spinal and joint pain. I have two autoimmune diseases and tend to have a lot of side effects.

Bur for many it is helpful and doesn't have bad side effects. Unfortunately we need it or Fosamax after other meds.

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@windyshores

@paula630 I thought Reclast increases bone density. It seems like semantics on the part of the doc who said it doesn't "grow bone." Right? Yes, it is not anabolic. It is anti-resorptive and increases density by lowering turnover. As I am sure you know.

from drugs.com "After treatment with Reclast, BMD increased by 11% from baseline after one year of treatment and by 20.7% from baseline after two years of treatment."

Here is what the doc may have been referring to:
ExcretionUrine (39% ± 16% as unchanged drug) within 24 hours; feces (< 3%)
Half-Life Elimination Triphasic; Terminal: 146 hours
so yeah techically it is "eliminated" relatively quickly but stays around for a long time in bone...

So technically Reclast is "elminated" fairly quickly (via urine) but remains in bone for years and is slowly released. Again the doctor's comments seem like semantics.
From drugs.com:
Zoledronic acid, which is the active ingredient in Reclast, can remain in your body for weeks or years after your last dose1. Reclast is an effective treatment and should improve bone density for around 2-3 years after a person stops treatment2. Side effects such as bone, joint, or musculoskeletal pain may occur days, months, or years after starting therapy3.

I have read somewhere that it can last 10 years. I am not sure. Ask the doc!

I have been concerned about osteoarthritis and bone spurs getting worse on Reclast and especially Evenity but not sure that is studied. Please share if you find anything. Time will tell. Most of the drug info sites mention spinal and joint pain. I have two autoimmune diseases and tend to have a lot of side effects.

Bur for many it is helpful and doesn't have bad side effects. Unfortunately we need it or Fosamax after other meds.

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We all know that some people love Reclast. But some people are really harmed by it. Those who are harmed don't need to hear the success stories. It's like the guy who is in the middle of the lake and he has a big hole in his boat and it's sinking fast. He's doomed. And the people on the shore are all calling out to him and telling him how they saved themselves. "We're about to throw some steaks on the grill and drink a cold one. Too bad you can't join us," they say as he sinks into the bottom of the lake.

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Hi. I am so grateful for this site and all of your sharings. My doctor suggested I get one of the two infusions: Denosumab which you take for life or Zoledronic Acid for 4 - 5 years. My doctor suggested that I get all my dental work done before any infusions. I thought, dental work goes on for a life time. It is not a once and done. I have had TMJ for 30 some years and clench my teeth when over-stressed. When I have an episode, it involves PT to get my mouth to open back up. I can't imagine having osteonecrosis of the jaw which is one of the side effects of both infusions.
So, I won't be getting any infusions.
Thank you.
Sue

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@dingus

We all know that some people love Reclast. But some people are really harmed by it. Those who are harmed don't need to hear the success stories. It's like the guy who is in the middle of the lake and he has a big hole in his boat and it's sinking fast. He's doomed. And the people on the shore are all calling out to him and telling him how they saved themselves. "We're about to throw some steaks on the grill and drink a cold one. Too bad you can't join us," they say as he sinks into the bottom of the lake.

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@dingus I wish you would read my posts more carefully. I also have side effects and always add a caveat because people are scared and many have no choice.
I wrote that the doctor involved was not really forthright about the fact that Reclast builds bone density or that it stays in the bones a very long time. I have struggle for 20 years with trying to tolerate meds, including through cancer. I think you misunderstand my intentions. I aim for balance. I have many health issues and may not be typical in my struggles.

I don't know anyone who "loves" any of these meds. I didn't love my cancer meds either but I'm still here 10 years later and I haven't fractured since I went on meds. I am in pain all the time and cannot tolerate another fracture.

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@sbauer4

Hi. I am so grateful for this site and all of your sharings. My doctor suggested I get one of the two infusions: Denosumab which you take for life or Zoledronic Acid for 4 - 5 years. My doctor suggested that I get all my dental work done before any infusions. I thought, dental work goes on for a life time. It is not a once and done. I have had TMJ for 30 some years and clench my teeth when over-stressed. When I have an episode, it involves PT to get my mouth to open back up. I can't imagine having osteonecrosis of the jaw which is one of the side effects of both infusions.
So, I won't be getting any infusions.
Thank you.
Sue

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@sbauer4 are you able to do Forteo or Tymlos? They do not affect dental issues.

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I don't know.
I will ask about that.
I cannot take Fosamax, but that is a Antiresorptive.
Forteo and Tymolos are anabolic.
Thanks so much.
Sue

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@sbauer4

I don't know.
I will ask about that.
I cannot take Fosamax, but that is a Antiresorptive.
Forteo and Tymolos are anabolic.
Thanks so much.
Sue

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I have so many thoughts, but every time I post something I get shut down. I need to get a tooth pulled right now. There's a crack in it. I'm scheduled for Dec 2nd and I'm scared to death of osteonecrosis. I asked my Rheumatologist about it and he said the oral surgeon can "work around it." I told that to the oral surgeon and he looked at me like I was nuts. There is no "work around." There is no definitive answer. And they just keep pumping out the Reclast. The drug company gets rich and we get osteonecrosis.
Talk to as many doctors as you can, Sue. Try to find the best answer. I for one, and I'm sure everyone on this post will be praying for you...and for me, too, I hope. I even asked the oral surgeon if I could just leave it alone for awhile. Of course the answer to that was "no."

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@dingus

We all know that some people love Reclast. But some people are really harmed by it. Those who are harmed don't need to hear the success stories. It's like the guy who is in the middle of the lake and he has a big hole in his boat and it's sinking fast. He's doomed. And the people on the shore are all calling out to him and telling him how they saved themselves. "We're about to throw some steaks on the grill and drink a cold one. Too bad you can't join us," they say as he sinks into the bottom of the lake.

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I, for one, am not going to shoot you down for inserting a dose of reality into the situation. While the majority may not be harmed, those who are have a right and obligation to speak up. And I have the right to full disclosure of any risks I might be taking if I choose ReClast.

My Neurosurgeon did not play down the risk of neck surgery. She volunteered that I could be the rare case where the surgery left one paralyzed from the neck down.

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@normahorn

I, for one, am not going to shoot you down for inserting a dose of reality into the situation. While the majority may not be harmed, those who are have a right and obligation to speak up. And I have the right to full disclosure of any risks I might be taking if I choose ReClast.

My Neurosurgeon did not play down the risk of neck surgery. She volunteered that I could be the rare case where the surgery left one paralyzed from the neck down.

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Thank you so much, Norma. That's exactly why I do these posts...to make sure as many people as possible know of the side effects from someone with personal experience above and beyond the package insert and doctor's brief. As you say...full disclosure. Thanks, again.

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