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.

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I have had bad side effects from
Evenity, but no side effects from
Reclast. And I have had very
good results after only one
Yearly infusion . My numbers
Improved for my spine and did
Not decline for my hips. I’ve
just had my second Reclast infusion and I feel fine.

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@barjar

I have had bad side effects from
Evenity, but no side effects from
Reclast. And I have had very
good results after only one
Yearly infusion . My numbers
Improved for my spine and did
Not decline for my hips. I’ve
just had my second Reclast infusion and I feel fine.

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Thank you. What side effects did you have with EVENITY and did they go away. I have had a few and would like to know if they will stay with me or not.

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@gently

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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To Awful Truth and Gently...Lots of technical information here, but for those of us on this post who have already had the Reclast infusion, and are suffering greatly and daily from the side effects, we need to know how to fix the problem. I work and have not been able to put in a full day since I had the infusion in February of 2023. And I can't find a doctor who will agree that the side effects are from the Reclast. Until I do I won't be able to get any help from a doctor. Even if it's only 1% of us we deserve some help.

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@dingus

To Awful Truth and Gently...Lots of technical information here, but for those of us on this post who have already had the Reclast infusion, and are suffering greatly and daily from the side effects, we need to know how to fix the problem. I work and have not been able to put in a full day since I had the infusion in February of 2023. And I can't find a doctor who will agree that the side effects are from the Reclast. Until I do I won't be able to get any help from a doctor. Even if it's only 1% of us we deserve some help.

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In my opinion, the medical system should do "test doses" for everyone or at least for those prone to reactions or side effects, and those with other health issues such as heart, kidney, neurologial, autoimmune disorders. The annual 5mg if a matter of systemic convenience and individual compliance, I just read.

Also, the study posted on this forum showed that lower doses are effective, and many of us are small humans.

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@dingus, that is the horrible thing about Reclast. It can be devastating and there is no way of knowing in advance if you will be the one to suffer. And then you are stuck. You for over a year. And if it is too painful to move around, you can't maintain strength.
If your doctors are denying it's because they don't know and are not willing to learn.
The only thing I've heard of that helps is steroid. There is not a way to get the drug out of your system and the reaction its probably way downstream of the drugs presence anyway.
You need a new doctor: I would go to someone who deals in immune reactions. Try to get on a low dose steroid. It's hard because you get too weakened and depressed to struggle .
I'm pressured to take Reclast, but stories like yours make me know I will never take that risk.
Thank you for your voice.
Now for some luck for you.

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@gently scary...thought one case. I have lupus and high antibodies to scleroderma, GERD, multiple allergies and sensitivities (and afib, kidney disease, history of breast cancer) and every medication is scary. Those of us with fractures need to find a way, and if we don't do a bisphosphonate we lose gains.

I continue to feel that the solution for us is test doses or lower doses in general, sometimes more frequently and sometimes not. The medical system is stressed almost everywhere and making these changes in a slow moving pharmaceutical and medical complex would be very slow, even with our doctors advocating.

So we need flexible doctors who are willing to do what is best for us.

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Another thing we can do is to ask our providers before starting any treatment how much support we might receive if we are unfortunate to have a major adverse reaction. If they deny that negative reactions are possible, I would run away from that provider. I was not favorably impressed by the NP at a fragility clinic when she went into how she would not be responsible as there is no way to know who might react negatively. That is true but my question was regarding support.

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@windyshores

@gently scary...thought one case. I have lupus and high antibodies to scleroderma, GERD, multiple allergies and sensitivities (and afib, kidney disease, history of breast cancer) and every medication is scary. Those of us with fractures need to find a way, and if we don't do a bisphosphonate we lose gains.

I continue to feel that the solution for us is test doses or lower doses in general, sometimes more frequently and sometimes not. The medical system is stressed almost everywhere and making these changes in a slow moving pharmaceutical and medical complex would be very slow, even with our doctors advocating.

So we need flexible doctors who are willing to do what is best for us.

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one case, but what of the uncounted like dingus who can find a doctor who can recognize a reaction to Reclast even when told by the person having the reaction.
We only get this much information because the patient was at a teaching hospital with fellows desperate to publish.
I was in a bit of a panic when you headed off for your Reclast infusion because of the connection to autoimmune.
Even knowing that 4mg is as effective as 5 the dosage remains at 5mg.
We all need your doctors.

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@normahorn

Another thing we can do is to ask our providers before starting any treatment how much support we might receive if we are unfortunate to have a major adverse reaction. If they deny that negative reactions are possible, I would run away from that provider. I was not favorably impressed by the NP at a fragility clinic when she went into how she would not be responsible as there is no way to know who might react negatively. That is true but my question was regarding support.

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Yes and if they won't give us a lower dose watch the IV bag, pull the needle, and run. I'm clicking all three reactions when I find that post, @normahorn

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