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 njhornung @normahorn

@estelle17
Reminds me of one of the 2024 Shkreli award winners. I saw an expanded explanation last year but not now.

"Amgen’s Lumakras Pricing: The pharmaceutical giant was criticized for promoting a 960mg dose of its cancer drug Lumakras, despite evidence that a lower 240mg dose offered the same efficacy with fewer side effects. The higher dose costs $180,000 more per patient annually."

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@normahorn

Never heard of the Shkreli awards. I am in awe of the concept and dismayed by the activities giving rise to the 'winners.' When put in this context, those activities confirm what most of us already know.

Those of us in the world of osteoporosis treatment are familiar with the name Amgen. Not surprised it was an award winner.

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Profile picture for njhornung @normahorn

@estelle17
Reminds me of one of the 2024 Shkreli award winners. I saw an expanded explanation last year but not now.

"Amgen’s Lumakras Pricing: The pharmaceutical giant was criticized for promoting a 960mg dose of its cancer drug Lumakras, despite evidence that a lower 240mg dose offered the same efficacy with fewer side effects. The higher dose costs $180,000 more per patient annually."

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@normahorn Thank you. She did not really give me an answer. I did read somewhere that there is no evidence that a half dose works. Still thinking of getting g another opinion before doing it.

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Profile picture for estelle17 @estelle17

@normahorn Thank you. She did not really give me an answer. I did read somewhere that there is no evidence that a half dose works. Still thinking of getting g another opinion before doing it.

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@estelle17

Yes, there is evidence lower doses work.

Shared files

ReClast- Less is More (ReClast-Less-is-More.pdf)

low-dose reclast (low-dose-reclast.pdf)

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Profile picture for njhornung @normahorn

@estelle17

Yes, there is evidence lower doses work.

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@normahorn Has anyone taken a REMS test?

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Profile picture for arleev @arleev

I had my infusion a week ago. I have used ice with some success. My hands and wrists are swollen. No medical professional seems to have any answers.

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@arleev my hands and wrists were swollen the next day…they had to cut off my rings. Reclast causes some terrible side effects but it is rare. It has been 4 months nd my back and joints still hurt…

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Only way some can tolerate meds is by adjusting dosage and/or timing (splitting a dose)..it’s true of many meds, including those for cancer…especially for us women who are lower weight !

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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
Thank you for reply. I have educated myself thats why im terrified to take Reclast for Prolia the brittle bone drugs. I have had a fusion l4 l5 at mayo clinic may 1, 2025, supposed to do reclast feb 9. Have a mayo endo that i think will say oh no studies done on the sequence. I was on fosamax 5 years no gains, lost 2 % each dexa in spine. Do not want to be on bisph let alone an IV one that i can't stop taking and stays in my body for 10 years and gives horrible side effects. I have high blood pressure, osteoporosis, and COPD FOR 30 YEARS, SCARED TO DEATH, OF MY COPD IMMUNE RESPONSES I COULD HAVE RESPIRATORY FAILURE FROM THIS. I NEED TO FIND A MAYO ENDO WHO WILL BE WILLING TO TRY AFTER 2 MONTHS OFF OF EVENITY; A TRIAL OF 2 YEARS OF TERIPARTIDE OR TYMLOS. THINK MY INS WILL ONLY TRY TERIPARTIDE NOT TYMLOS. IT'S Aetna, regular medicare plan. do i just call them and explain my situation is all i can think of to do if i can't find on here anyone who has an Mayo rochester mn endo who put them on this sequence. i only have 4 months to figure this out. Dr. don't understand my risks are higher im terrified. They are not the ones getting this rock gut shit put in their bodies. Clinical trials are only for the healthiest people and then they get these dam drugs out in the real world with older people and people who have multiple other conditions that will worsen Reclast symptoms and we are supposed to blindly trust them. My surgeons said with my osteopenia and fusion only 6 or 7 months out, no stomping to improve bone density, can't lift over 10 lbs. what am i going to do. Need as normal bone as i can get, want to get out of osteopenia range and into normal range. Need more bone building as 5 years previous fosamax will blunt Evenity to maybe 9 % gains in spine not the 13.7 % in the clinical trials. Going to explain this to my endo at mayo next. he never answers my long portal messages. I don't really like him but i don't have much time to find any one else at mayo rochester which is 4 hours from us in little pocahontas iowa nw iowa. Town of 1500 people. I feel like im doomed to have to be on reclast. thank you for your kind reply. So hoping you could tell me you had endo from mayo who did this. I suppose i won't find anyone on here. i need them to just reply to me on MEssenger so i don't have to keep checking here all the time. Diana Nighswonger from pocahontas iowa. Thanks.

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Profile picture for findtheanswersdn @findtheanswersdn

@heartfelt70
Thank you for reply. I have educated myself thats why im terrified to take Reclast for Prolia the brittle bone drugs. I have had a fusion l4 l5 at mayo clinic may 1, 2025, supposed to do reclast feb 9. Have a mayo endo that i think will say oh no studies done on the sequence. I was on fosamax 5 years no gains, lost 2 % each dexa in spine. Do not want to be on bisph let alone an IV one that i can't stop taking and stays in my body for 10 years and gives horrible side effects. I have high blood pressure, osteoporosis, and COPD FOR 30 YEARS, SCARED TO DEATH, OF MY COPD IMMUNE RESPONSES I COULD HAVE RESPIRATORY FAILURE FROM THIS. I NEED TO FIND A MAYO ENDO WHO WILL BE WILLING TO TRY AFTER 2 MONTHS OFF OF EVENITY; A TRIAL OF 2 YEARS OF TERIPARTIDE OR TYMLOS. THINK MY INS WILL ONLY TRY TERIPARTIDE NOT TYMLOS. IT'S Aetna, regular medicare plan. do i just call them and explain my situation is all i can think of to do if i can't find on here anyone who has an Mayo rochester mn endo who put them on this sequence. i only have 4 months to figure this out. Dr. don't understand my risks are higher im terrified. They are not the ones getting this rock gut shit put in their bodies. Clinical trials are only for the healthiest people and then they get these dam drugs out in the real world with older people and people who have multiple other conditions that will worsen Reclast symptoms and we are supposed to blindly trust them. My surgeons said with my osteopenia and fusion only 6 or 7 months out, no stomping to improve bone density, can't lift over 10 lbs. what am i going to do. Need as normal bone as i can get, want to get out of osteopenia range and into normal range. Need more bone building as 5 years previous fosamax will blunt Evenity to maybe 9 % gains in spine not the 13.7 % in the clinical trials. Going to explain this to my endo at mayo next. he never answers my long portal messages. I don't really like him but i don't have much time to find any one else at mayo rochester which is 4 hours from us in little pocahontas iowa nw iowa. Town of 1500 people. I feel like im doomed to have to be on reclast. thank you for your kind reply. So hoping you could tell me you had endo from mayo who did this. I suppose i won't find anyone on here. i need them to just reply to me on MEssenger so i don't have to keep checking here all the time. Diana Nighswonger from pocahontas iowa. Thanks.

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I believe they have terrified you and your understand how this happens. Please know that stress hurts bone as it produces cortisol.
I only had one Reclast infusion and it made me very sick. I have had nothing sense. I lift weights and walk and live my life. I read books about this and I took a three month course. Low bone density does not mean low bone quality. You do need to learn how to move your body. Go on Facebook and search for Brick House Bones with Dr. Lisa. She has a PHD in physical therapy and specializes in osteoporosis and osteopenia. Don't say all that you wrote above. Just watch and watch and watch until you see what's going on and you will likely begin to feel more at ease.
Do it for one week at least and then contact me again. We can exchange personal info and be in touch. There is a way. I do not trust doctors. They make a lot of money off of these drugs and if sick people. I do not trust the FDA. Blessings to you. Please smile and take a deep breath. You got this.

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Profile picture for findtheanswersdn @findtheanswersdn

@heartfelt70
Thank you for reply. I have educated myself thats why im terrified to take Reclast for Prolia the brittle bone drugs. I have had a fusion l4 l5 at mayo clinic may 1, 2025, supposed to do reclast feb 9. Have a mayo endo that i think will say oh no studies done on the sequence. I was on fosamax 5 years no gains, lost 2 % each dexa in spine. Do not want to be on bisph let alone an IV one that i can't stop taking and stays in my body for 10 years and gives horrible side effects. I have high blood pressure, osteoporosis, and COPD FOR 30 YEARS, SCARED TO DEATH, OF MY COPD IMMUNE RESPONSES I COULD HAVE RESPIRATORY FAILURE FROM THIS. I NEED TO FIND A MAYO ENDO WHO WILL BE WILLING TO TRY AFTER 2 MONTHS OFF OF EVENITY; A TRIAL OF 2 YEARS OF TERIPARTIDE OR TYMLOS. THINK MY INS WILL ONLY TRY TERIPARTIDE NOT TYMLOS. IT'S Aetna, regular medicare plan. do i just call them and explain my situation is all i can think of to do if i can't find on here anyone who has an Mayo rochester mn endo who put them on this sequence. i only have 4 months to figure this out. Dr. don't understand my risks are higher im terrified. They are not the ones getting this rock gut shit put in their bodies. Clinical trials are only for the healthiest people and then they get these dam drugs out in the real world with older people and people who have multiple other conditions that will worsen Reclast symptoms and we are supposed to blindly trust them. My surgeons said with my osteopenia and fusion only 6 or 7 months out, no stomping to improve bone density, can't lift over 10 lbs. what am i going to do. Need as normal bone as i can get, want to get out of osteopenia range and into normal range. Need more bone building as 5 years previous fosamax will blunt Evenity to maybe 9 % gains in spine not the 13.7 % in the clinical trials. Going to explain this to my endo at mayo next. he never answers my long portal messages. I don't really like him but i don't have much time to find any one else at mayo rochester which is 4 hours from us in little pocahontas iowa nw iowa. Town of 1500 people. I feel like im doomed to have to be on reclast. thank you for your kind reply. So hoping you could tell me you had endo from mayo who did this. I suppose i won't find anyone on here. i need them to just reply to me on MEssenger so i don't have to keep checking here all the time. Diana Nighswonger from pocahontas iowa. Thanks.

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@findtheanswersdn
I am a patient at Mayo Rochester and will send you a message..

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Profile picture for findtheanswersdn @findtheanswersdn

@heartfelt70
Thank you for reply. I have educated myself thats why im terrified to take Reclast for Prolia the brittle bone drugs. I have had a fusion l4 l5 at mayo clinic may 1, 2025, supposed to do reclast feb 9. Have a mayo endo that i think will say oh no studies done on the sequence. I was on fosamax 5 years no gains, lost 2 % each dexa in spine. Do not want to be on bisph let alone an IV one that i can't stop taking and stays in my body for 10 years and gives horrible side effects. I have high blood pressure, osteoporosis, and COPD FOR 30 YEARS, SCARED TO DEATH, OF MY COPD IMMUNE RESPONSES I COULD HAVE RESPIRATORY FAILURE FROM THIS. I NEED TO FIND A MAYO ENDO WHO WILL BE WILLING TO TRY AFTER 2 MONTHS OFF OF EVENITY; A TRIAL OF 2 YEARS OF TERIPARTIDE OR TYMLOS. THINK MY INS WILL ONLY TRY TERIPARTIDE NOT TYMLOS. IT'S Aetna, regular medicare plan. do i just call them and explain my situation is all i can think of to do if i can't find on here anyone who has an Mayo rochester mn endo who put them on this sequence. i only have 4 months to figure this out. Dr. don't understand my risks are higher im terrified. They are not the ones getting this rock gut shit put in their bodies. Clinical trials are only for the healthiest people and then they get these dam drugs out in the real world with older people and people who have multiple other conditions that will worsen Reclast symptoms and we are supposed to blindly trust them. My surgeons said with my osteopenia and fusion only 6 or 7 months out, no stomping to improve bone density, can't lift over 10 lbs. what am i going to do. Need as normal bone as i can get, want to get out of osteopenia range and into normal range. Need more bone building as 5 years previous fosamax will blunt Evenity to maybe 9 % gains in spine not the 13.7 % in the clinical trials. Going to explain this to my endo at mayo next. he never answers my long portal messages. I don't really like him but i don't have much time to find any one else at mayo rochester which is 4 hours from us in little pocahontas iowa nw iowa. Town of 1500 people. I feel like im doomed to have to be on reclast. thank you for your kind reply. So hoping you could tell me you had endo from mayo who did this. I suppose i won't find anyone on here. i need them to just reply to me on MEssenger so i don't have to keep checking here all the time. Diana Nighswonger from pocahontas iowa. Thanks.

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@findtheanswersdn, that is a lot of moving parts, diagnoses, procedures and medications to plan and work with while facing big treatment decisions on the horizon. It must be tiring and stressful. While you mentioned some frustrations with your treatment, it sounds like you have upcoming appointments where it may be more beneficial to straighten out much of your questions in person. Your post is a nice list of questions that would be worth bringing forward during your appointment times.

@19kcm mentioned they are a Mayo Rochester patient and may be someone to ask a few questions regarding their experiences at Mayo Rochester.

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