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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@bjgrace

Hello, my endocrinologist has recommended that I start Reclast after finishing up with EVENITY. I have had 7 shots with EVENITY so far.
It would be helpful to hear if there are some people that have had Reclast without side effects assuming there are people without them. This forum is very helpful, however it would be beneficial to hear success stories to provide balanced view.

Jump to this post

I had the Reclast infusion in April of 2024, and have had no side effects.

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@bjgrace

Hello, my endocrinologist has recommended that I start Reclast after finishing up with EVENITY. I have had 7 shots with EVENITY so far.
It would be helpful to hear if there are some people that have had Reclast without side effects assuming there are people without them. This forum is very helpful, however it would be beneficial to hear success stories to provide balanced view.

Jump to this post

@bjgrace I'm in your situation of looking at the next med and considering Reclast, so I have no success story to report on it. I do think many people have very few side effects or the side effects subside within a week and most people accept that as ok. Some percentage of people have longer lasting severe side effects that change their lives dramatically for the worse. What we don't know is what is that percentage that suffer that fate. Is it 1 percent or 10 percent, we don't know?
What I can offer is that lower doses with safer dosing schedules are not only possible but shown in studies to work just as well. From a previous post here's what I can offer as a possible way of improving those unknown odds:

"There is strong evidence in studies that lower dosages and altered infusion schedules produce very similar results and in one case superior results to the 5 mg dose of Reclast.
It becomes clear from studying the papers that the motivating factors behind the 5mg yearly dose is convenience, patient compliance, money and they say the greater good for the most people. They do not consider intelligent individualized medicine. Nor do any of these papers report anything other than temporary discomfort as a side effect. None of them consider that a lower dose might be safer.
Here are three papers showing lower doses work just as well:

This one compares 3 different doses and shows that 1mg does well, 2.5mg does best and 5mg does ALMOST as well as 2.5 mg. All three were one dose with result at one year.
https://academic.oup.com/jcem/article/97/1/286/2833555?login=false
The next one alters dosing schedules depending on dosage. Combined with the paper above this is great information. They used dosages as small as 0.25mg quarterly with the same result as the large annual dose. It's behind a paywall but you can get a free account and get three free articles a month.
https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807?download=true
The third one compares 2mg to 4mg and concludes that 4mg is better. If you dig into the details you see that there is a tiny advantage to 4mg in the spine and a tiny advantage to the femur neck and total hip for the 2mg. Hardly what would make me call the 4mg superior and certainly not a significant difference. The difference in the spine is between 2mg gains 4.86% and 4mg gains 5.35%. So a gain of about 5% either dose. As I said it flips the other way with the hips but they do not consider that even though their study shows it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8420937/ "

Good luck with your choices!

REPLY

I've read that 1% of Reclast patients experience Cytokine Storm Reaction. 30% and 40% in different studies experience a lesser APR 1 to 3 week reaction. Explained in this way:
"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."

Advice from an anonymous. expert who has treated many patients with IV zoledronic acid and played a key role in the development of Fosamax, oral and IV Boniva

"There are 3 things I routinely do when I treat patients with IV zoledronic that not all physicians understand. First, I order the infusion to dilute the 5 mg of zoledronic acid (which comes in 100 mL of D5W) into 500 mL of NS (normal saline), thereby diluting the drug from 5 mg% to 0.8 mg%. Then I order it to be administrated over 60 minutes, instead of 15 minutes. Giving an N-BP more dilute and more slowly makes it even safety for the kidneys. The 3rd thing I always do is order the infusion nurses to administer 650 mg of acetaminophen to the patient during the infusion, and I tell the patient to take at home the same dose of acetaminophen (two regular strength Tylenols) with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose with breakfast the 2nd morning after the infusion. These 8 doses total of acetaminophen reduce the chance of a symptomatic APR from 20-30% to < 1%.The other thing to consider is that in most patients, a 5 mg infusion of zoledronic acid will control the rate of bone turnover for at least 24 months, so most of my patients do not get annual infusions."

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@awfultruth

@bjgrace I'm in your situation of looking at the next med and considering Reclast, so I have no success story to report on it. I do think many people have very few side effects or the side effects subside within a week and most people accept that as ok. Some percentage of people have longer lasting severe side effects that change their lives dramatically for the worse. What we don't know is what is that percentage that suffer that fate. Is it 1 percent or 10 percent, we don't know?
What I can offer is that lower doses with safer dosing schedules are not only possible but shown in studies to work just as well. From a previous post here's what I can offer as a possible way of improving those unknown odds:

"There is strong evidence in studies that lower dosages and altered infusion schedules produce very similar results and in one case superior results to the 5 mg dose of Reclast.
It becomes clear from studying the papers that the motivating factors behind the 5mg yearly dose is convenience, patient compliance, money and they say the greater good for the most people. They do not consider intelligent individualized medicine. Nor do any of these papers report anything other than temporary discomfort as a side effect. None of them consider that a lower dose might be safer.
Here are three papers showing lower doses work just as well:

This one compares 3 different doses and shows that 1mg does well, 2.5mg does best and 5mg does ALMOST as well as 2.5 mg. All three were one dose with result at one year.
https://academic.oup.com/jcem/article/97/1/286/2833555?login=false
The next one alters dosing schedules depending on dosage. Combined with the paper above this is great information. They used dosages as small as 0.25mg quarterly with the same result as the large annual dose. It's behind a paywall but you can get a free account and get three free articles a month.
https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807?download=true
The third one compares 2mg to 4mg and concludes that 4mg is better. If you dig into the details you see that there is a tiny advantage to 4mg in the spine and a tiny advantage to the femur neck and total hip for the 2mg. Hardly what would make me call the 4mg superior and certainly not a significant difference. The difference in the spine is between 2mg gains 4.86% and 4mg gains 5.35%. So a gain of about 5% either dose. As I said it flips the other way with the hips but they do not consider that even though their study shows it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8420937/ "

Good luck with your choices!

Jump to this post

great research @awfultruth, especially on the lower dosing. Thanks for posting.

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@awfultruth

@bjgrace I'm in your situation of looking at the next med and considering Reclast, so I have no success story to report on it. I do think many people have very few side effects or the side effects subside within a week and most people accept that as ok. Some percentage of people have longer lasting severe side effects that change their lives dramatically for the worse. What we don't know is what is that percentage that suffer that fate. Is it 1 percent or 10 percent, we don't know?
What I can offer is that lower doses with safer dosing schedules are not only possible but shown in studies to work just as well. From a previous post here's what I can offer as a possible way of improving those unknown odds:

"There is strong evidence in studies that lower dosages and altered infusion schedules produce very similar results and in one case superior results to the 5 mg dose of Reclast.
It becomes clear from studying the papers that the motivating factors behind the 5mg yearly dose is convenience, patient compliance, money and they say the greater good for the most people. They do not consider intelligent individualized medicine. Nor do any of these papers report anything other than temporary discomfort as a side effect. None of them consider that a lower dose might be safer.
Here are three papers showing lower doses work just as well:

This one compares 3 different doses and shows that 1mg does well, 2.5mg does best and 5mg does ALMOST as well as 2.5 mg. All three were one dose with result at one year.
https://academic.oup.com/jcem/article/97/1/286/2833555?login=false
The next one alters dosing schedules depending on dosage. Combined with the paper above this is great information. They used dosages as small as 0.25mg quarterly with the same result as the large annual dose. It's behind a paywall but you can get a free account and get three free articles a month.
https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807?download=true
The third one compares 2mg to 4mg and concludes that 4mg is better. If you dig into the details you see that there is a tiny advantage to 4mg in the spine and a tiny advantage to the femur neck and total hip for the 2mg. Hardly what would make me call the 4mg superior and certainly not a significant difference. The difference in the spine is between 2mg gains 4.86% and 4mg gains 5.35%. So a gain of about 5% either dose. As I said it flips the other way with the hips but they do not consider that even though their study shows it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8420937/ "

Good luck with your choices!

Jump to this post

Thank you for this information. I had heard about splitting the dose and am going to speak to my doctor about it. I would prefer that option I think.

We’re you or are you on EVENITY?
Thanks again.

REPLY

The only remedy I've heard of is steroid and we know what that does to the bones. But your physician may be willing to monitor a low dose.

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@bjgrace

Thank you for this information. I had heard about splitting the dose and am going to speak to my doctor about it. I would prefer that option I think.

We’re you or are you on EVENITY?
Thanks again.

Jump to this post

@bjgrace Hi, I just had my 11th shot this week. I made tremendous progress on 10 shots. So much progress that I'm not quite sure I can trust the DXA's on this. Anyway I've got one more shot and then 30 more days per my doc to start on the next med. I'm trying hard to figure that one out.

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@awfultruth

@bjgrace Hi, I just had my 11th shot this week. I made tremendous progress on 10 shots. So much progress that I'm not quite sure I can trust the DXA's on this. Anyway I've got one more shot and then 30 more days per my doc to start on the next med. I'm trying hard to figure that one out.

Jump to this post

Thanks. Have you had any side effects on EVENITY?

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@bjgrace

Thanks. Have you had any side effects on EVENITY?

Jump to this post

@bjgrace My side effects were so insignificant that I hesitate to mention them. I'll list them but remember they were just nothing. So, slight puffiness at inject sites once or twice for 2-3 hrs, felt stimulated - speeded up a bit a few times, had constricted feeling in my forehead sometimes, a minor headache once or twice, had a bruise at injection site once. I did tummy injections. No symptom lasted long. And the symptoms like the forehead constriction were very modest compared to the many reactions I get to foods and odors.
I probably should have just answered no side effects!

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@bjgrace

Hello, my endocrinologist has recommended that I start Reclast after finishing up with EVENITY. I have had 7 shots with EVENITY so far.
It would be helpful to hear if there are some people that have had Reclast without side effects assuming there are people without them. This forum is very helpful, however it would be beneficial to hear success stories to provide balanced view.

Jump to this post

I’ve had several Reclast infusions over the years and never had any reaction other than slight arm soreness at the IV site.

REPLY
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