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 gently @gently

kell4042,
some have extreme reactions to Reclast "1%," they say. Some 30% have a miserable flu-like response that lasts for weeks, before resolving gradually. There isn't a good way to know your reaction before the injection.
There isn't a way of ridding your body of the medication. If you are extremely miserable someone can prescribe steroid. But steroid is terrible for you bones.
It is important that you contact the prescribing physician.
" 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 in some patients."
This is how the doctor who ran the clinical trials describes the APR--accute phase rection. He advises he use of tylenol and an allergy med. He also says that a person is unlikely to have this reaction with the second injection. I say a person with this reaction is unlikely to have a second injection.
I'd sooner see you on an anabolic, Tymlos or Forteo. And do you have a diagnosis indicating why you have early osteoporosis. But for now, if you decide to weather these weeks call your prescriber. If you don't have an endocrinologist, you might get a referral. If it is completely unbearable, you can go to emergency where that could give you IV steroid.
I'm sorry you are having this miserable reaction. And I hope it resolves quickly, but let us know.

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@gently do you know anything about I'm 69 female have copd terrified reclast in 4 months. Had l4l5 fusion may 1 6 months ago mayo Rochester mn. 2 bad knees can't exercise or lose 185 weigh too much for spine now. High blood pressure severe allergies. Feel immune system compromised bad lungs bronchitis and pneumonia my whole life. Birn 3 months premature. Weigh 2 lbs at birth in incubator 3 months after born. Scared to do reckast afraid of respiratory failure, atrial fib, back pain bone pain and joint pains. I gave no pain now after surgery. Don't want muscle spasms in my back or anywhere with screws and rods in fusion. It's nit even healed yet won't be year of fusion till may 1 2026. I don't know what to do. Any suggestions. Evenity 7 mo wish I could do that again. No side effects just insomnia. Want tymlos but don't think they will do after evenity. Any help u can give me. Rochester mn mayo endo ? He is nit concerned with all my previous conditions he's to passive. Feels like he just wants reckast or prolia cuz reckast gives them lots money. ?

.

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Profile picture for lkhender @lkhender

@dingus You are not alone! What they're afraid of, imo, is that we understand that they merely prescribe drugs according to what the sales rep and the literature from the pharmaceutical company (Big Pharma) tells them. They don't consider the side effects because they are told that they are "minimal." I would also venture to guess that they get financial support for prescribing the drug. I'm a retired RN, injured by Reclast and this is my opinion.

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@lkhender You are exactly correct in my opinion and I too am a retired RN & Reclast injured.

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Profile picture for findtheanswersdn @findtheanswersdn

@jaynedanco hi yes I'm supposed to get reclast in 4 mos. I'm terrified. I have had COPD FOR 20 YEARS ON INHALERS ETC FOR LUNGS, I never smoked was 3 mo premature weighed 2 lbs born had lung problems whole life. 69 year female high blood pressure worried it will give me atrial fibrillation permanently or respiratory failure. I had to have a l4l5 fusion. May 1 2025. Scared I will get muscle spasms and severe pain in my hips two knee replacements pain there to scared and don't want spasms in my back with the fusion not knowing if its healed yet and screws and rods afraid they will break. Don't want to be sick. I'm thi king of doing prolia instead.

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@findtheanswersdn
I understand that you are frightened and don't blame you.
I have COPD and emphysema and have been on inhalers for at least 20 years . I hope you are seeing a specialist that is monitoring you and that you trust and that you get an annual bone density test and bloodwork before they decide what medication you need that year .

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Profile picture for findtheanswersdn @findtheanswersdn

@heartfelt70 hi I'm so sorry u had those horrible reclast side effects. I'm supposed to get it 4 mos. Had to have l4l5 fusion don't know if it will not
Be healed yet then. On evenity 12 months. Have screws and rods terrified of vomiting and cough and have COPD SCARED OF A RESP FAILURE NOT BEING ABLE TO BREATH AND MUSCLE SPASMS OR SEVERE BACK PAIN OR HIPS OR MY TWO KNEES BEEN REPLACED. I HAVE NO PAIN NOW IN MY BACK FROM FUSION. DONT WANT ANY EITHER. IM THINKING OF PROLIA. WHICH IS THE ONE I ABSOLUTELY DID NOT WANT TO DO. THIS RECLAST IF U GET THEM HORRIBLE ONES MAY NOT GO AWAY. DID YOU HAVE A MAYO CLINICBENDOCRINOLOGIST? CAN U LET ME KNOW ON MESSENGER IF U DID. DIANA NIGHSWONGER POCAHONTAS IA.

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@I did not have an endocrinologist from Mayo, I had one from the Medical College of Georgia. Of course they changed their name. They seem to do that every few years.
I am so sorry to hear of your multiple health issues. I would not take Prolia and I don't care who the doctor is or where they practice.
After my horrible experience with Reclast, I changed doctors and decided to not take meds. I hired a trainer and began lifting weights. My diet is a bone healthy one and I supplement with D3, K2, magnesium, Calcium, and a few others. Doctors make A lot of money prescribing these meds and I do not trust them at all. I have had no fractures and after two years of lifting weights, I can almost deadlift my body weight. It is my suggestion that you take a step back and educate yourself thoroughly and reassess where you are. It takes a lot of reading. I have multiple issues as do you and mine are different, but they could take me down if I were not so persistent. I hope you take a step back and ask God for guidance as you do your own research. You can be strong again.

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Profile picture for heartfelt70 @heartfelt70

@I did not have an endocrinologist from Mayo, I had one from the Medical College of Georgia. Of course they changed their name. They seem to do that every few years.
I am so sorry to hear of your multiple health issues. I would not take Prolia and I don't care who the doctor is or where they practice.
After my horrible experience with Reclast, I changed doctors and decided to not take meds. I hired a trainer and began lifting weights. My diet is a bone healthy one and I supplement with D3, K2, magnesium, Calcium, and a few others. Doctors make A lot of money prescribing these meds and I do not trust them at all. I have had no fractures and after two years of lifting weights, I can almost deadlift my body weight. It is my suggestion that you take a step back and educate yourself thoroughly and reassess where you are. It takes a lot of reading. I have multiple issues as do you and mine are different, but they could take me down if I were not so persistent. I hope you take a step back and ask God for guidance as you do your own research. You can be strong again.

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@heartfelt70
How are your dexa scores ?

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Profile picture for findtheanswersdn @findtheanswersdn

@gently do you know anything about I'm 69 female have copd terrified reclast in 4 months. Had l4l5 fusion may 1 6 months ago mayo Rochester mn. 2 bad knees can't exercise or lose 185 weigh too much for spine now. High blood pressure severe allergies. Feel immune system compromised bad lungs bronchitis and pneumonia my whole life. Birn 3 months premature. Weigh 2 lbs at birth in incubator 3 months after born. Scared to do reckast afraid of respiratory failure, atrial fib, back pain bone pain and joint pains. I gave no pain now after surgery. Don't want muscle spasms in my back or anywhere with screws and rods in fusion. It's nit even healed yet won't be year of fusion till may 1 2026. I don't know what to do. Any suggestions. Evenity 7 mo wish I could do that again. No side effects just insomnia. Want tymlos but don't think they will do after evenity. Any help u can give me. Rochester mn mayo endo ? He is nit concerned with all my previous conditions he's to passive. Feels like he just wants reckast or prolia cuz reckast gives them lots money. ?

.

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@findtheanswersdn,
https://pmc.ncbi.nlm.nih.gov/articles/PMC7560921/figure/Fig2/
A consecutive second year of Evenity https://pmc.ncbi.nlm.nih.gov/articles/PMC7560921/#:~:text=BMD%20results%20for%20the%20overall,%2C%20Online%20Resource%20Table%20S1).
Considering that you haven't had side effects, it might be worth pursuing with this or another endocrinologist.
The risk of afib with Reclast thought to be low. But even lower with Evenity.
I have heard of osteoporosis patients having success holding gains with Tymlos after Evenity. That sequence is one I'd rather see you take.
Guidelines are for taking an antiresorptive after Evenity. I'd consult with the present endocrinologist, before looking elsewhere.
Reclast could work out for you. I don't hear of many people escaping without some aches, but Evenity seems worse in the general aching department. If you do decide on Reclast,
be sure to make it a 4mg dose with an hour for infusion.
The spasms with Reclast can be caused by hypocalcemia. When bones break down they release calcium into the bloodstream. So any of the antiresorptives can cause muscle spasms.
Bone markers, especially CTX, should guide your course especially if you can secure a prescription for Tymlos.
I'm so happy that you have no pain with the fusion. Tymlos would advance that healing.

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Profile picture for gravity3 @gravity3

@heartfelt70
How are your dexa scores ?

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My dexa scores went from -3.9 to -3.3 and now it is time for another dexa. Since the first improvement, I upped my exercise and my diet is ALL about bones. I look forward to seeing this next set of scores.

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Profile picture for heartfelt70 @heartfelt70

My dexa scores went from -3.9 to -3.3 and now it is time for another dexa. Since the first improvement, I upped my exercise and my diet is ALL about bones. I look forward to seeing this next set of scores.

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@heartfelt70

Glad for your improvement. Would love to hear about your next scores if you are open to sharing them.

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Profile picture for gravity3 @gravity3

@heartfelt70

Glad for your improvement. Would love to hear about your next scores if you are open to sharing them.

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I don't mind sharing at all. I never go on this site until someone has a response or the like. Would you mind checking in with me, and let me know which direction you are taking?

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Profile picture for heartfelt70 @heartfelt70

I don't mind sharing at all. I never go on this site until someone has a response or the like. Would you mind checking in with me, and let me know which direction you are taking?

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@heartfelt70

Ive been on alendronate, forteo, evenity and two injections of Prolia. I have been on bhrt for about one year. Although my primary reason for starting bhrt was not for my bone health, I know that it will yield some help for my bones. I am considering a plan where I make a transition from prolia. Possibly by taking a low dose of reclast to help offset prolia rebound, then go back to an anabolic. At 77 I dont feel ready to be on prolia until I die.

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