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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all of the bone medication except Forteo and Tymlos carry the risk of atypical femur fracture and osteonecrosis, especially of the jaw.
This is because they slow or stop remodeling. Remodeling removes older fissured bone before laying down new bone and in the case of Prolia and Evenity. Reclasts and the other bisphosphonates don't lay down new bone, but simply stop the resorption of damaged bone.
The risk is greater over time because the damaged bone becomes more and more avascular, and more brittle.
Until 2003 there was only one way to medically prevent fractures. That was to stop the bone from being removed. People do go on and off these antiresorptives, and you can. Most people don't with Prolia because is of the risk of rebound. But I think most people do go on and off bisphosphonates because there are really few osteoporosis drugs to choose from.

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Profile picture for gently @gently

ikhender, a physician described:
"When amino-bisphosphonates (N-BPs) [Reclast] 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 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."
He didn't explain about the possibility of the effect lasting a year or more. There is the 146 hour half life. But the positive feedback loop that causes a severe, systemic inflammatory response can make it self sustaining.
I think the IV steroid can break the cycle. Was it even temporarily effective for you?

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I was not offered a steroid. My endocrinologist had nothing to offer me. I found a function medicine doc who helped me over a 9 month period. 16 months later I'm much better!

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Profile picture for kristie2 @kristie2

I’m now going to get my 1st reclast infusion in September after being on Evenity for one year than Prolia for 1 year. Needless to say I’m very nervous about this due to such negative comments. How are you doing?

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Im in the same boat. I thought I was going to be able to go on a drug holiday but now after my second pro shot and after a year of Evenity, my doctor wants me to get a Reclast infusion. I am very ambivalent and concerned about the side effects

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Profile picture for gretch19 @gretch19

Im in the same boat. I thought I was going to be able to go on a drug holiday but now after my second pro shot and after a year of Evenity, my doctor wants me to get a Reclast infusion. I am very ambivalent and concerned about the side effects

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I’m also concerned about the side effects. I have been lucky so far with the Evenity & Prolia. I’ve read some that have no real effects or only slightly. Then you read where some have had bad side effects. I remember I felt the same way about starting Evenity and Prolia. I was so worried. I know that I need to take something so I don’t rebound. I’ve read so many studies and after just 2 injections of Prolia you need to take something. Even though I had no gains with Prolia I don’t want to lose what I had from Evenity. I went from -4.6 in my spine to -3.3. Then Prolia with no real change I’m at -3.2 . My hips are osteopenia and I can deal with that. All I can do is wish for the best and I wish you the best also.

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Profile picture for gravity3 @gravity3

Jessicamc,
I may have missed this. What other drugs have you taken for OP. What was the sequence?

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I'm 66 now when I was 50 and was first diagnosed with osteoporosis I was put on fosamax, I had really bad reflux. I tried to deal with it myself with exercise and with diet and with calcium and other supplements. Unfortunately I ended up having an accident and shattered my elbow. I was then put on forteo for a year and a half, and had some hearing loss. I was taken off of that. Again tried to do it at myself no success. Then went on boniva and quite a bit of pain and was taken off of that. Then I was put on prolia for 5 years no problems.

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Profile picture for lkhender @lkhender

I had terrible reactions to the Reclast and reported it to the FDA but nothing seems to be done about this horrible drug. I found a good Functional Medicine doctor. She started me on several supplements including mineral drops, HRT, Ozone therapy, red light therapy, etc. It was a 9 month program and very expensive but I'm much better today. I've read a lot and have watched YouTube videos about the Dexa Scan and the diagnosis or osteoporosis. I would suggest this to others. I have made the decision to NEVER take anything else for the treatment of osteoporosis. The more you learn, the more you know. I'm 73 year old and have never broken a bone.

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Well unfortunately I did break a bone. And sort of in the midst of all this big mess back I guess it's close to 8 years ago now I fell and shattered my elbow into pieces that is what led me to the forteo. I did not seem to have any problems with that drug but then after a year and a half I have my own hearing loss and it seems have been connected. I think I shared all that before. I just said you went to a functional medicine doctor? Is that like an integrative medicine doctor? We have an integrative center not for me I May check out and actually an integrative doctor which means somebody who has a medical degree and practice is medicine as well as some of the more natural things so I may look into one of those individuals? I don't know anything about these things that you're mentioning if you have any information you could pass on to me I would appreciate it. Thank you

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Profile picture for gretch19 @gretch19

Im in the same boat. I thought I was going to be able to go on a drug holiday but now after my second pro shot and after a year of Evenity, my doctor wants me to get a Reclast infusion. I am very ambivalent and concerned about the side effects

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I’m in the same situation as you. Finished a year of evenity and stalling in scheduling my first reclast infusion… I’m sure the majority of people don’t have issues with side effects? 🤷‍♀️ maybe I’m just reading too much into this….🙄

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Profile picture for janeted @janeted

I’m in the same situation as you. Finished a year of evenity and stalling in scheduling my first reclast infusion… I’m sure the majority of people don’t have issues with side effects? 🤷‍♀️ maybe I’m just reading too much into this….🙄

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You might want to request a lower dose of ReClast. There is evidence for the efficiency of that approach.

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Profile picture for janeted @janeted

I’m in the same situation as you. Finished a year of evenity and stalling in scheduling my first reclast infusion… I’m sure the majority of people don’t have issues with side effects? 🤷‍♀️ maybe I’m just reading too much into this….🙄

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How long have you stalled?

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Profile picture for gravity3 @gravity3

How long have you stalled?

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Finished evenity end of May

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