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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Eventually I was able to view and print it out!
I do hope it is okay to share here! Thank You for sharing this with me!

Immune-mediated syndromes following intravenous bisphosphonate therapy
Reclast infusion
https://link.springer.com/article/10.1007/s10787-017-0365-9
Abstract
Objectives
Intravenous (IV) infusion of aminobisphosphonates (ABP) induces cytokine release by peripheral blood Vγ9δ2 T cells, resulting in an immediate short-term inflammatory response in up to 50% of patients. We evaluated possible long-term pro-inflammatory effects of IV ABP.
Methods
Retrospective case-series study from one rheumatology specialist’s clinic. 2261 electronic charts were reviewed for administration of ‘zoledronate’ or different brand names of zoledronic acid, and relevant clinical data was retrieved for patients who had received the infusion.
Results
Thirteen patients had recieved zoledronate. In six, new-onset or exacerbation of a previous inflammatory/autoimmune disorder was diagnosed within 3 months following infusion. Of these, one patient developed new-onset rheumatoid arthritis (RA), two polymyalgia rheumatica (PMR), two suffered a flare of Crohn’s disease-related and aromatase inhibitor-induced arthralgias, and one patient acquired autoimmune hemophilia. Pre-existing malignancy and immediate inflammatory response following zoledronate were more frequent in patients experiencing new or worsening immunologic manifestations (3/6 vs. 0/7, and 5/6 vs. 2/7, respectively).
Conclusions
Intravenous ABP may trigger induction of persistent autoimmune syndromes, especially when accompanied by an immediate adverse reaction or pre-existing malignancy.

REPLY
@dannyandebbie

I had my infusion in June 2024….Some 10 months ago. I saw my endocrinologist in November and shared my experiences and on going issues; nauseated, exhausted, pain in both shoulders and pain in the bottom of my left foot. He shared that these things that I am experiencing has nothing to do with the infusion and recommend physical therapy and for me to see a neurologist. Well, I have been doing physical therapy and still going. Seeing a neurologist required a referral from my primary, who did not see the need. Ten months later I’m called to come into the endocrinologist office for a consultation with their pharmacist. In doing so, it was expressed that they wanted to give me a different medication that would be in the form of a shot instead of the infusion, to which I declined. A day later I received a follow up call suggesting that I have scan preformed as soon as possible to see where my scores are at and to also see if the Reclast infusion did anything for me and they also sent a referral to my primary and suggested that I see a neurologist for my on going symptoms; I go this coming Monday for my scan test. They then scheduled me for a follow up appointment with my endocrinologist; January 2026!
I do have some underlying medical issues that could be contributing to the symptoms ; Ankolosing spondylitis, bladder cancer treatment (5x) and a constant burning sensation in the bladder area caused by the treatments. So, maybe I am a little more sensitive to these medications. All I read about Reclast and they take ZERO acknowledgement for these symptoms and then say, well maybe for a short period of time but not 10 months out! And to conclude; I’m told that it is okay to take your time and really think about the benefits of receiving this injection that has very little side effects; severe lower back pain and/or jaw discomfort; like I really want to take a chance on either !
The more I sit and think about the issues the worse the symptoms! Honestly, our brains and developed to assist in our bodily functions and to prevent us from doing things that can hurt us….not always providing the correct information. I know I did not injure myself to cause these pains and feel that I need to keep sending the message to my brain that this pain is only temporary and only caused by my poor judgement of receiving an infusion that had so many side effects.
Try, and I emphasized really try and focus away from the pain and focus more on your daily activities! Our Brain has alerted us there is an internal problem. Okay, I acknowledge this, now I’ll take control from here out and just really try to focus less on the pain and more on your daily task and hopefully, eventually the pain will lessen and life will become a little more manageable!

Jump to this post

It is all from the infusion
My bones are inflamed because of the remodeling caused by Reclast
My endocrinologist says she is very sorry, is one case in a million!!
Well I am that one case and my life has been turned upside down
My pain is in the bones of my left femur and my ribs
I can’t sleep or function
After all kind of testing they determined it is not my heart
My misery is the same
I wish it was a heart attack and be done with it, but no I have to live with these side effects
I sympathize with you

REPLY
@reclastsuferer

It is all from the infusion
My bones are inflamed because of the remodeling caused by Reclast
My endocrinologist says she is very sorry, is one case in a million!!
Well I am that one case and my life has been turned upside down
My pain is in the bones of my left femur and my ribs
I can’t sleep or function
After all kind of testing they determined it is not my heart
My misery is the same
I wish it was a heart attack and be done with it, but no I have to live with these side effects
I sympathize with you

Jump to this post

Please, do not give up! I’ve been going to physical therapy and it has been helping some! You now know that it is not from an injury! And, because of this you can make it get better over time. I try to stay as active as possible and do try to keep up with my exercise! My worst is now my left foot and sleep! I am better able to handle the pain in my shoulders throughout the day but at night, the smallest move and my shoulder pain wakes me right up. I am able to go back to sleep despite my sleep being disrupted by the pain. It takes some ambition on my part and I am not going to allow this medication to ruin my total life! Stay positive and it will get some better, hopefully completely better with time. In the meantime, No more bone density medication for me!

REPLY
@reclastsuferer

It is all from the infusion
My bones are inflamed because of the remodeling caused by Reclast
My endocrinologist says she is very sorry, is one case in a million!!
Well I am that one case and my life has been turned upside down
My pain is in the bones of my left femur and my ribs
I can’t sleep or function
After all kind of testing they determined it is not my heart
My misery is the same
I wish it was a heart attack and be done with it, but no I have to live with these side effects
I sympathize with you

Jump to this post

I also was provided this by a person on here!

Immune-mediated syndromes following intravenous bisphosphonate therapy
Reclast infusion
https://link.springer.com/article/10.1007/s10787-017-0365-9
Abstract
Objectives
Intravenous (IV) infusion of aminobisphosphonates (ABP) induces cytokine release by peripheral blood Vγ9δ2 T cells, resulting in an immediate short-term inflammatory response in up to 50% of patients. We evaluated possible long-term pro-inflammatory effects of IV ABP.
Methods
Retrospective case-series study from one rheumatology specialist’s clinic. 2261 electronic charts were reviewed for administration of ‘zoledronate’ or different brand names of zoledronic acid, and relevant clinical data was retrieved for patients who had received the infusion.
Results
Thirteen patients had recieved zoledronate. In six, new-onset or exacerbation of a previous inflammatory/autoimmune disorder was diagnosed within 3 months following infusion. Of these, one patient developed new-onset rheumatoid arthritis (RA), two polymyalgia rheumatica (PMR), two suffered a flare of Crohn’s disease-related and aromatase inhibitor-induced arthralgias, and one patient acquired autoimmune hemophilia. Pre-existing malignancy and immediate inflammatory response following zoledronate were more frequent in patients experiencing new or worsening immunologic manifestations (3/6 vs. 0/7, and 5/6 vs. 2/7, respectively).
Conclusions
Intravenous ABP may trigger induction of persistent autoimmune syndromes, especially when accompanied by an immediate adverse reaction or pre-existing malignancy.

REPLY
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