1. < Osteoporosis & Bone Health

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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spiderplant | @spiderplant | 17 hours ago
In reply to @normahorn "We often hear about a time limit for the number of ReClast infusions. Is the limit..." + (show)
@normahorn

We often hear about a time limit for the number of ReClast infusions. Is the limit really on a years basis or a mg basis? Five years at the standard dosage of 5 mg each time loads our bodies with 25 mg. If we can reduce the dosage, and throw in a few holidays, could we stay on ReClast for maybe 10 years? Rhetorical questions as none of us have the answer.

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Yes, frustrating not to have more answers but I found this (eventually!) helpful: Kept asking the endocrinologist I came to after my osteoporosis finding (no broken bones or other known issues) "but what about after... " questions (this after a year of Evenity and just now Reclast). It took me a few times until his response finally registered: that the research on osteoporosis treatments is developing so rapidly that we can't know what things will look like in the coming years / can't predict now what will be best to do in different situations. (And I'd add that things I would think can only improve....)

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windyshores | @windyshores | 17 hours ago
In reply to @normahorn "We often hear about a time limit for the number of ReClast infusions. Is the limit..." + (show)
@normahorn

We often hear about a time limit for the number of ReClast infusions. Is the limit really on a years basis or a mg basis? Five years at the standard dosage of 5 mg each time loads our bodies with 25 mg. If we can reduce the dosage, and throw in a few holidays, could we stay on ReClast for maybe 10 years? Rhetorical questions as none of us have the answer.

Jump to this post

@normahorn my endo just wrote me that my CTX of 145 shows that Reclast is suppressing my bone turnover. He forgot that I had only 1 mg in June and 1mg in September and none since so I reminded him and asked if I could delay any further infusions until monitoring shows it is needed. I mentioned that his colleague has said that it is possible only 2 mg/year might be effective. (I remember McCormick said any CTX< 100 is over suppression).

We'll see what my doc says. He normally doesn't do CTX. I fear being a PIA but I have to take care of myself. I try to be humorous with him.

I said I was "eager" to talk and want to ask about more Tymlos/Forteo, or maybe 4 months Evenity then some Reclast then another 4 months Evenity then Reclast. Or whatever his research is showing.

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1 reply
njhornung | @normahorn | 16 hours ago
In reply to @windyshores "@normahorn my endo just wrote me that my CTX of 145 shows that Reclast is suppressing..." + (show)
@windyshores

@normahorn my endo just wrote me that my CTX of 145 shows that Reclast is suppressing my bone turnover. He forgot that I had only 1 mg in June and 1mg in September and none since so I reminded him and asked if I could delay any further infusions until monitoring shows it is needed. I mentioned that his colleague has said that it is possible only 2 mg/year might be effective. (I remember McCormick said any CTX< 100 is over suppression).

We'll see what my doc says. He normally doesn't do CTX. I fear being a PIA but I have to take care of myself. I try to be humorous with him.

I said I was "eager" to talk and want to ask about more Tymlos/Forteo, or maybe 4 months Evenity then some Reclast then another 4 months Evenity then Reclast. Or whatever his research is showing.

Jump to this post

That approach of waiting for the CTX to show need seems to me to be so logical. I recently needed a mild pain medication. Thankfully the dentist prescribed Tylenol 3 and not something 10 times stronger than what I needed. Treat to the need.

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