Reclast Infusions: Side-effects & Recovery time

Posted by cindydee @cindydee, Mar 20, 2018

I just had a reclast infusion last week and have had serious side effects. I had the worst flue like aching for 5 days then my lefty arm became full of inflammation in the wrist, elbow and shoulder which caused extreme pain and I lost the ability to straighten my elbow. Ultrasound showed huge amounts of fluid throughout the arm. The right arm is now starting to have the same symptoms. The pain is excruciating. Has anyone else experienced anything like this? Neither the ER doctor nor the Dr. who prescribed the procedure knew what to do to ease the symptoms. Both arms from fingertips to shoulder are swollen and neither elbow will straighten. Anyone else have adverse reactions to the reclast infusion? If yes, how long did it last?

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So sorry I didn't proofread what I read because it came out all jumbled from the autocorrect. I had said that I fainted in the shower and fortunately did not break bones.

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@dgm123s

So sorry I didn't proofread what I read because it came out all jumbled from the autocorrect. I had said that I fainted in the shower and fortunately did not break bones.

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I understood what you were saying 🙂I wasn’t taking anything for bone building before that, thinking that running and weight training and swimming and good nutrition would be enough but it wasn’t. So Reclast is my first osteoporosis intervention. My endocrinologist felt that it would be the most effective option and also the least likely to have bad side effects -, the shot every six months, unfortunately leads to rapid bone loss
after you discontinue it, according to my endocrinologist. The Reclast regimen she has me on is one infusion per year for three years and then a “vacation” for a year or two because if you take it continuously for more than 3 years it can cause side effects such as brittle femur like Fosomax does. I’m crossing my fingers that the Reclast will help- I am scared of falling all the time now - I’m 11 months out from breaking my hip and it won’t be fully healed until a full year is up. A long rehab and I want to get back to being active! Hard for someone who was training for a half marathon to spend a year recovering from a broken hip🙁

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So sorry that you're going through that. It is unbelievable that active people get osteoporosis. I also exercise nearly every day walk two to four miles go to the gym do yoga weights etc and I too have severe osteoporosis but I have been fortunate thus far not to have broken anything
I was actually diagnosed when I was 46 and was on fosamax and then boniva for 11 years when I began developing an ulcer in my stomach. So I went off of it for 10 years and I am in this situation now
I'm glad that Reclast appears to be working for you at this time. From what I understand prolia is not a bisphosphate like Reclast and as you said cannot be stopped without being replaced by another med. So reclast when you do have that hiatus should still be giving you some protection just like boniva gave me throughout those years that I was on nothing. Please feel better and once again I'm so sorry for what you're going through! I appreciate your feedback.

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So sorry to hear that! What is PMR?

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@dgm123s

Thanks so much for your response I really appreciate it! A month ago I faingy it in the shower and fell unfortunately did not break anything but I may have cracked my ribs a bit and hurt my muscles on my side and back
I was very fortunate because my t-square for my spine is a minus 3.7 and I believe my hip is minus 2.
6. I was a week away from going on a Evenity and the doctor said to cancel because they're doing tests on my brain and heart and found that I do have hardening of the arteries in the brain so I am afraid now to go on that because there is a black box warning of heart attack or stroke and now I feel that I may be at high risk for either. Can't deal with my bones right now until I get back all my tests results but I wanted to at least have somewhat of a plan. I am reluctant to go on forteo or tymlos because some people are having side effects of AFib however I did want to go on a bone builder prior to going on something to sustain the bones
What were you on prior to the reclast? I do like the fact that it's only given once a year but I am so fearful of side effects because I'm so sensitive to vaccines in general. The COVID vaccine and shingles vaccine put me down for 4 to 5 days. How do you usually tolerate vaccines? Thanks so much for your input truly appreciated!

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I had afib after starting Tymlos which may or may not have been from the drug. However when I restarted it at a low dose and moved up slowly, I have had no heart problems. Please do not avoid Tymlos based on comments in this or any other forum. Try starting at two clicks for a week (the pen has 8 clicks).

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@susanop

I understood what you were saying 🙂I wasn’t taking anything for bone building before that, thinking that running and weight training and swimming and good nutrition would be enough but it wasn’t. So Reclast is my first osteoporosis intervention. My endocrinologist felt that it would be the most effective option and also the least likely to have bad side effects -, the shot every six months, unfortunately leads to rapid bone loss
after you discontinue it, according to my endocrinologist. The Reclast regimen she has me on is one infusion per year for three years and then a “vacation” for a year or two because if you take it continuously for more than 3 years it can cause side effects such as brittle femur like Fosomax does. I’m crossing my fingers that the Reclast will help- I am scared of falling all the time now - I’m 11 months out from breaking my hip and it won’t be fully healed until a full year is up. A long rehab and I want to get back to being active! Hard for someone who was training for a half marathon to spend a year recovering from a broken hip🙁

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If you broke a hip, wouldn't it be more helpful to be on Forteo, Tymlos or Evenity which actually grow bone? Just wondering.

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The body is always growing bone but the imbalance comes when the bone being broken down exceeds the bone growth. The goal as I understand it from my endocrinologist’s explanation, is to get the process in balance, she chose to do this by slowing the breakdown process. And I’m not sure but my guess is that, if this is not sufficient, she would then turn to a bone growth drug. I have read that certain osteoporosis drugs grow bone on the outside of the bone rather than the center and that this kind of bone growth does little to keep bones from fracturing because it does not increase bone strength but it does show up in a Dexa scan as more bone. My knowledge ends here but I will try to do some research to find out why my endocrinologist (who trains other docs in how to treat osteoporosis) chose to use a drug that limits reabsorption as the first line of defense (maybe the body makes better bone than the drugs do?). If anyone can answer this question please chime in!

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@susanop

The body is always growing bone but the imbalance comes when the bone being broken down exceeds the bone growth. The goal as I understand it from my endocrinologist’s explanation, is to get the process in balance, she chose to do this by slowing the breakdown process. And I’m not sure but my guess is that, if this is not sufficient, she would then turn to a bone growth drug. I have read that certain osteoporosis drugs grow bone on the outside of the bone rather than the center and that this kind of bone growth does little to keep bones from fracturing because it does not increase bone strength but it does show up in a Dexa scan as more bone. My knowledge ends here but I will try to do some research to find out why my endocrinologist (who trains other docs in how to treat osteoporosis) chose to use a drug that limits reabsorption as the first line of defense (maybe the body makes better bone than the drugs do?). If anyone can answer this question please chime in!

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Forteo and Tymlos grow bone without stopping resorption, therefore they build quality bone. Biphosphanates and Prolia may not help quality bone, which is why there are sometimes atypical fractures after too much time on them. Evenity does both: bone growth and stops resorption so supercharged increase in density but there may be problems with quality but to a lesser degree than biphosphanates like Fosamax, Reclast, Boniva etc. That is my understanding. Usually with a major fracture like the hip my doc would prescribe Forteo or Tymlos, or Evenity but I also don't know your T scores.

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This is very interesting. Thanks for sharing. I don't have my T-scores offhand, but I do know that I have severe osteoporosis in my wrists and severe osteopenia in my hips. My guess is that 40 years of pounding the pavement as a long-distance runner kept my bone density higher in my hips than my wrists, but that is only conjecture. I'll ask my endocrinologist about Forteo or Tymlos or Evenity. Again, my guess is that she is saving the big guns for later, in case the Reclast doesn't work? There is so much that I don't know about this process, and that lack of knowledge is really frustrating. My endo sat with me for 45 minutes and painstakingly explained everything to me, but frankly (even though I'm a writer for a living and used to processing large amounts of information), it was difficult to absorb it all. I'm going to print out your reply and try to do a little research on my own after I meet this latest copy deadline. I came from following Dr. Joel Fuhrman, who advocates for nutritional and weight-bearing fixes and is very opposed to the pharmaceutical treatments because he feels that the quality of the bone grown is very poor and not any less prone to breaking, so I'm trying to rid myself of this bias and keep an open mind, which is hard for someone who swore she'd never be on one of these drugs!
Thanks for sharing this info with me!

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@susanop

This is very interesting. Thanks for sharing. I don't have my T-scores offhand, but I do know that I have severe osteoporosis in my wrists and severe osteopenia in my hips. My guess is that 40 years of pounding the pavement as a long-distance runner kept my bone density higher in my hips than my wrists, but that is only conjecture. I'll ask my endocrinologist about Forteo or Tymlos or Evenity. Again, my guess is that she is saving the big guns for later, in case the Reclast doesn't work? There is so much that I don't know about this process, and that lack of knowledge is really frustrating. My endo sat with me for 45 minutes and painstakingly explained everything to me, but frankly (even though I'm a writer for a living and used to processing large amounts of information), it was difficult to absorb it all. I'm going to print out your reply and try to do a little research on my own after I meet this latest copy deadline. I came from following Dr. Joel Fuhrman, who advocates for nutritional and weight-bearing fixes and is very opposed to the pharmaceutical treatments because he feels that the quality of the bone grown is very poor and not any less prone to breaking, so I'm trying to rid myself of this bias and keep an open mind, which is hard for someone who swore she'd never be on one of these drugs!
Thanks for sharing this info with me!

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Tymlos and Forteo improve bone quality. It is just not true that all bone meds create poor quality. And some studies say Tymlos and Forteo are less effective if you have done the front line drugs, which makes sense. The best sequence is to do Tymlos or Forteo first. The problem for most is that insurance doesn't cover them until other meds have been tried, but a fracture plus low T score gets insurance coverage.

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