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 dannyandebbie @dannyandebbie

@cccs from what I was told, about 18 months. Well, I am on my 18th month and I can say, on a good day, my pain has gone from a 10 to a 3 on average; some days lower and others a bit higher. I just feel it is slowly getting better and the last thing I want is a full reoccurrence and I fear another infusion of any medication can and more than likely will cause additional or continuous pain all over again.

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@dannyandebbie

Did you have a full dose of reclast?

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Profile picture for gravity3 @gravity3

@dannyandebbie

Did you have a full dose of reclast?

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@gravity3 not sure what full amount is but I received 5 ml over a 15 minute period!

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Profile picture for gently @gently

cccs, sorry about you knee. There are studies that suggest that the bisphosphonates have protective effect against degradation in the knee, but others suggesting that bisphosphonates have deleterious effect.
There isn't enough research to warn us or encourage us.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11505443/
The mechanism of action is thought to be that aminobisphosphonates transiently stimulate the production of proinflammatory cytokines such as interleukin-1, interleukin-6, and tumor necrosis factor-alpha.
https://pubmed.ncbi.nlm.nih.gov/16755241/.
https://www.sciencedirect.com/science/article/pii/S1063458420310864
from communication with an endocrinologis who oversaw the Reclast trials.
"When amino-bisphosphonates (N-BPs) are administered IV, resulting in a high systemic exposure (unlike when taken orally, where the very low oral bioavailability results in a quite low systemic exposure), phagocytic cells other than just osteoclasts can encounter the N-BP, Up to 30% of patients can experience an APR (acute phase reaction) after their initial infusion of zoledronic acid. This APR, which starts usually about 6 hours post-infusion, and can last several days, consists of a mild fever associated with muscle and joint pains, similar to the symptoms with a bad viral infection such as the flu. And it turns out that the cause is very similar, as well. When a special category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it, just like an osteoclast will engulf alendronate or zoledronic bound to the bone surface. And just like an osteoclast that engulfs a N_BP undergoes apoptosis (programmed cell death), the gamma-delta T-cells that engulfs a N-BP also undergoes apoptosis. The difference is, when a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha, just like when it encounters a flu virus. And these inflammatory cytokines mediate the temperature rise and myalgias, just as with a flu infection."
I think that this https://pmc.ncbi.nlm.nih.gov/articles/PMC8373857/.
article might explain the longer term consequences for some on this and other medications.

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@gently . Thank you for your reply. It is very interesting. Do you think there is any chance the pseudogout will resolve after the zoledronic acid is gone? No one seems to know.

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cccs, I would expect that it will. Here is a case report regarding a different bisphosphonate alendronate. https://academic.oup.com/rheumatology/article-abstract/44/1/131/2899192

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Profile picture for gravity3 @gravity3

@dannyandebbie

Did you have a full dose of reclast?

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@gravity3 I have been told that receiving the dose over a longer period, an hour in my case, lessens the side effects.

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Profile picture for marmze @marmze

@gravity3 I have been told that receiving the dose over a longer period, an hour in my case, lessens the side effects.

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@marmze
I believe that reduces the acute phase reaction but not the long-term adverse effects some experience.

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Profile picture for gently @gently

cccs, I would expect that it will. Here is a case report regarding a different bisphosphonate alendronate. https://academic.oup.com/rheumatology/article-abstract/44/1/131/2899192

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@gently Thank you. Nice report.I find it hard to find much published on the matter.

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Profile picture for gently @gently

cccs, sorry about you knee. There are studies that suggest that the bisphosphonates have protective effect against degradation in the knee, but others suggesting that bisphosphonates have deleterious effect.
There isn't enough research to warn us or encourage us.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11505443/
The mechanism of action is thought to be that aminobisphosphonates transiently stimulate the production of proinflammatory cytokines such as interleukin-1, interleukin-6, and tumor necrosis factor-alpha.
https://pubmed.ncbi.nlm.nih.gov/16755241/.
https://www.sciencedirect.com/science/article/pii/S1063458420310864
from communication with an endocrinologis who oversaw the Reclast trials.
"When amino-bisphosphonates (N-BPs) are administered IV, resulting in a high systemic exposure (unlike when taken orally, where the very low oral bioavailability results in a quite low systemic exposure), phagocytic cells other than just osteoclasts can encounter the N-BP, Up to 30% of patients can experience an APR (acute phase reaction) after their initial infusion of zoledronic acid. This APR, which starts usually about 6 hours post-infusion, and can last several days, consists of a mild fever associated with muscle and joint pains, similar to the symptoms with a bad viral infection such as the flu. And it turns out that the cause is very similar, as well. When a special category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it, just like an osteoclast will engulf alendronate or zoledronic bound to the bone surface. And just like an osteoclast that engulfs a N_BP undergoes apoptosis (programmed cell death), the gamma-delta T-cells that engulfs a N-BP also undergoes apoptosis. The difference is, when a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha, just like when it encounters a flu virus. And these inflammatory cytokines mediate the temperature rise and myalgias, just as with a flu infection."
I think that this https://pmc.ncbi.nlm.nih.gov/articles/PMC8373857/.
article might explain the longer term consequences for some on this and other medications.

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@gently
I love all of the links to research. But could you summarize your post for us non-medical people? Do I understand you to say that treating the long-term effects of Reclast would be similar to or exactly like treating inflammation from any chronic disease, such as lupus?

Yes, I am reading the articles linked and I have a general understanding of what each is saying. But I wondered about your overall conclusion. I understand that if you are not a medical provider you might not want to give a conclusion. But you can give your opinion.

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Well, gee, there are a number of responses and I have not read them all. But I wondered if you had ruled out other potential causes of your symptoms.

I am going into Reclast with overall body aches. I don't expect those to go away with the Reclast infusion.

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Profile picture for CarolynK @carolynk

@gently
I love all of the links to research. But could you summarize your post for us non-medical people? Do I understand you to say that treating the long-term effects of Reclast would be similar to or exactly like treating inflammation from any chronic disease, such as lupus?

Yes, I am reading the articles linked and I have a general understanding of what each is saying. But I wondered about your overall conclusion. I understand that if you are not a medical provider you might not want to give a conclusion. But you can give your opinion.

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Carolyn, hi.
Lupus meds are much more complex: antimalarials, immunosuppressants (like methotrexate), anti-inflammatories, but more significantly the biologics targeting specific pathways.
Reclast reaction are best stopped initially because they aren't your body's response to the world, but your body's response to a specific trigger. I see two very different reactions. Long term responses can be promulgated by the cytokine reaction itself. Or they can be an allergic reaction that persists because a person is and remains allergic to something in the drug.
I'm not sure if I've answered. Ask me. I've no shortage of opinions.
Somewhere, I think in Korea, a university is trying a protocol of taking a steroid before the Reclast infusion. The steroid anti-inflammatories taken are quick short acting medications. These are the 5 day packs that are sometimes given for Reclast reactions.

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