Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

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Just saw my doctor yesterday April 26, 2022 and he suggested that I wait until June to get my 2nd booster. I got my first infusion of Reclast on March 23, 2022. Has anyone had their second booster while on Reclast ? Did they experience increased side effects after the booster. I was on Prolia last year and experienced severe joint, bone , and muscle pain after my first booster.
I know we all react differently, I would just like to know how you are feeling after the second booster if you are on Reclast.
Thank you

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@hlp123

Just saw my doctor yesterday April 26, 2022 and he suggested that I wait until June to get my 2nd booster. I got my first infusion of Reclast on March 23, 2022. Has anyone had their second booster while on Reclast ? Did they experience increased side effects after the booster. I was on Prolia last year and experienced severe joint, bone , and muscle pain after my first booster.
I know we all react differently, I would just like to know how you are feeling after the second booster if you are on Reclast.
Thank you

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From my April 17th posting : I had Reclast June 2021. Then my first COVID Booster in October 2021 and my second COVID Booster April 2022. Other than the expected soreness at the injection site and feeling a little tired the next day, I had no real reaction.

Hopefully you will have the same experience!

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@jmanj

From my April 17th posting : I had Reclast June 2021. Then my first COVID Booster in October 2021 and my second COVID Booster April 2022. Other than the expected soreness at the injection site and feeling a little tired the next day, I had no real reaction.

Hopefully you will have the same experience!

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Thank you for your response.
I appreciate it and I am optimistic that I will have a similar experience with the booster.
I hope you have continued success with Reclast.

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I was diagnosed with osteoporosis in Feb and my endocrinologist recommended Reclast IV once a yr. After my first infusion May 6 I woke with severe pains over my body and could not walk. I had to call 911 and was hospitalized from the ER. After discharge I continued to have severe pains migrating to different body parts for over 2 wks and headaches are still waking me every morning, also migrating to different parts of my head. I have developed pulmonary emboli and my CT shows multiple segmental defects; I am sure it was the Reclast because my first symptom May 7 was feeling a band tight around my chest. 15 days after the Reclast infusion I developed double vision and am fearful of losing my eyesight.
I regret taking Reclast and feel I was not adequately warned about the serious consequences it could cause.

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@mitllama

I was diagnosed with osteoporosis in Feb and my endocrinologist recommended Reclast IV once a yr. After my first infusion May 6 I woke with severe pains over my body and could not walk. I had to call 911 and was hospitalized from the ER. After discharge I continued to have severe pains migrating to different body parts for over 2 wks and headaches are still waking me every morning, also migrating to different parts of my head. I have developed pulmonary emboli and my CT shows multiple segmental defects; I am sure it was the Reclast because my first symptom May 7 was feeling a band tight around my chest. 15 days after the Reclast infusion I developed double vision and am fearful of losing my eyesight.
I regret taking Reclast and feel I was not adequately warned about the serious consequences it could cause.

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I am so very sorry that you are having these side effects !
I have been trying to find out how to best relieve the painful muscle and joint and bone side effects. So, far the only options I have found from my doctors are Tylenol #3 and ice packs and topical creams. I switched to Reclast on March of 2022 because I refused to continue on Prolia. The side effects were severe. Now I am experiencing similar side effects from Reclast. I would love to know if these is anything that will not hurt my liver and or constipate me for a week that relieves the pain. thank you !

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@hlp123

I am so very sorry that you are having these side effects !
I have been trying to find out how to best relieve the painful muscle and joint and bone side effects. So, far the only options I have found from my doctors are Tylenol #3 and ice packs and topical creams. I switched to Reclast on March of 2022 because I refused to continue on Prolia. The side effects were severe. Now I am experiencing similar side effects from Reclast. I would love to know if these is anything that will not hurt my liver and or constipate me for a week that relieves the pain. thank you !

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The instructions I received at the time of my Reclast infusion said that ibuprofen was not recommended due to interaction with the Reclast. In the hospital the providers followed those instructions and I was offered just Tylenol or narcotics (which I don't want). Fnally after 5 days of severe pain I googled Reclast and WebMD recommended both ibuprofen and Tylenol for pain relief. Since I don't happen to respond to ibuprofen (there is individual variability as to which Non Steroidal Anti Inflammatory Drug (NSAID) you get relief from), I took naproxen and got immediate relief. However NSAIDs cause GI irritation, so I alternated Tylenol and naproxen and that reduced the pain. After a week my daughter suggested aspirin and I found that 1 tab 325 mg at bedtime prevented or markedly reduced the headaches that were waking me up early each morning after Reclast. I took aspirin each night for 3 nights until I developed the pulmonary emboli; then I had to start anticoagulant therapy (which has no effect on pain) and stop the aspirin.
Because of the double vision that I have also developed, I was started urgently on high dose prednisone while tests and consultations are being done to determine the cause; prednisone immediately stopped all headaches. But of course you wouldn't be prescribed steroids until it was absolutely necessary (they are testing whether I developed an auto-immune reaction to Reclast and a condition called giant cell arteritis which has a 15-20% risk of sudden permanent blindness).

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@mitllama

The instructions I received at the time of my Reclast infusion said that ibuprofen was not recommended due to interaction with the Reclast. In the hospital the providers followed those instructions and I was offered just Tylenol or narcotics (which I don't want). Fnally after 5 days of severe pain I googled Reclast and WebMD recommended both ibuprofen and Tylenol for pain relief. Since I don't happen to respond to ibuprofen (there is individual variability as to which Non Steroidal Anti Inflammatory Drug (NSAID) you get relief from), I took naproxen and got immediate relief. However NSAIDs cause GI irritation, so I alternated Tylenol and naproxen and that reduced the pain. After a week my daughter suggested aspirin and I found that 1 tab 325 mg at bedtime prevented or markedly reduced the headaches that were waking me up early each morning after Reclast. I took aspirin each night for 3 nights until I developed the pulmonary emboli; then I had to start anticoagulant therapy (which has no effect on pain) and stop the aspirin.
Because of the double vision that I have also developed, I was started urgently on high dose prednisone while tests and consultations are being done to determine the cause; prednisone immediately stopped all headaches. But of course you wouldn't be prescribed steroids until it was absolutely necessary (they are testing whether I developed an auto-immune reaction to Reclast and a condition called giant cell arteritis which has a 15-20% risk of sudden permanent blindness).

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I am hoping that your side effects become less and less severe and you get some relief !
I am just praying, at this point, that I can get through this year and then I will not take anymore Reclast. I felt that I had to take Reclast for at least one year because of the rebound effect of the year of Prolia ( A terrible position for anyone to be experiencing), but this is very stressful. I cannot take steroids because my blood pressure increases to 240/160 .
God Bless you !

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@mitllama

The instructions I received at the time of my Reclast infusion said that ibuprofen was not recommended due to interaction with the Reclast. In the hospital the providers followed those instructions and I was offered just Tylenol or narcotics (which I don't want). Fnally after 5 days of severe pain I googled Reclast and WebMD recommended both ibuprofen and Tylenol for pain relief. Since I don't happen to respond to ibuprofen (there is individual variability as to which Non Steroidal Anti Inflammatory Drug (NSAID) you get relief from), I took naproxen and got immediate relief. However NSAIDs cause GI irritation, so I alternated Tylenol and naproxen and that reduced the pain. After a week my daughter suggested aspirin and I found that 1 tab 325 mg at bedtime prevented or markedly reduced the headaches that were waking me up early each morning after Reclast. I took aspirin each night for 3 nights until I developed the pulmonary emboli; then I had to start anticoagulant therapy (which has no effect on pain) and stop the aspirin.
Because of the double vision that I have also developed, I was started urgently on high dose prednisone while tests and consultations are being done to determine the cause; prednisone immediately stopped all headaches. But of course you wouldn't be prescribed steroids until it was absolutely necessary (they are testing whether I developed an auto-immune reaction to Reclast and a condition called giant cell arteritis which has a 15-20% risk of sudden permanent blindness).

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Are pulmonary emboli a known side effect of Reclast? Did any doc explain to you how that could happen? t's not listed anywhere. Did you report it to the company? These are horrific experiences and I hope you feel better and that your eyes improve.

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I have a video health check in a month with my Kaiser doctor who prescribed to me Reclast after my last DEXA which I question the validity of because they are KNOWN to be all over the map...example: 2016 mild osteoPOROSIS, 2018...osteoPENIA (where did the porosis go? I did nothing special...did NOT take the prescribed FOSAMAX thankfully), 2022 Moderate osteoPOROSIS...notoriously unreliable.

My doctor knows that on blood tests the ONLY thing that is ever of MILD concern is that my GFR (glomuler filtration rate) is on the low end of NORMAL and occasionally has dipped JUST BELOW normal, I must get a blood draw before any prescription can be ordered for me and if the number is below normal they have to change it to something that doesn't negatively affect kidneys. So I'm shaking my head because she said "since you are resisting Fosamax would you consider a once a year RECLAST INFUSION? " I said what I always say..."let me research it and I'll get back to you". 2011 - FDA WARNS OF LINK BETWEEN RECLAST and Kidney FAILURE: Why would she ask me to take this drug...and I assume that like all other prescription meds it comes with the warning "Do not take <insert drug name here> if you are allergic to it." HOW DO YOU KNOW YOU'RE ALLERGIC TO IT UNTIL YOU TAKE IT? It's a ONCE A YEAR infusion! What if you get the infusion and THEN learn you are allergic to something in the mixture???? How do you get it OUT of your body? I'm beyond disgusted with medicine in the USA.
https://www.medicinenet.com/script/main/art.asp?articlekey=148974#:~:text=Sept.%201%2C%202011%20--%20The%20FDA%20warns%20that,or%20diuretics%20at%20the%20same%20time%20as%20Reclast.

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@mariegroh

I have a video health check in a month with my Kaiser doctor who prescribed to me Reclast after my last DEXA which I question the validity of because they are KNOWN to be all over the map...example: 2016 mild osteoPOROSIS, 2018...osteoPENIA (where did the porosis go? I did nothing special...did NOT take the prescribed FOSAMAX thankfully), 2022 Moderate osteoPOROSIS...notoriously unreliable.

My doctor knows that on blood tests the ONLY thing that is ever of MILD concern is that my GFR (glomuler filtration rate) is on the low end of NORMAL and occasionally has dipped JUST BELOW normal, I must get a blood draw before any prescription can be ordered for me and if the number is below normal they have to change it to something that doesn't negatively affect kidneys. So I'm shaking my head because she said "since you are resisting Fosamax would you consider a once a year RECLAST INFUSION? " I said what I always say..."let me research it and I'll get back to you". 2011 - FDA WARNS OF LINK BETWEEN RECLAST and Kidney FAILURE: Why would she ask me to take this drug...and I assume that like all other prescription meds it comes with the warning "Do not take <insert drug name here> if you are allergic to it." HOW DO YOU KNOW YOU'RE ALLERGIC TO IT UNTIL YOU TAKE IT? It's a ONCE A YEAR infusion! What if you get the infusion and THEN learn you are allergic to something in the mixture???? How do you get it OUT of your body? I'm beyond disgusted with medicine in the USA.
https://www.medicinenet.com/script/main/art.asp?articlekey=148974#:~:text=Sept.%201%2C%202011%20--%20The%20FDA%20warns%20that,or%20diuretics%20at%20the%20same%20time%20as%20Reclast.

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FYI I have eschewed all prescription medications and dealing with my "ALLEGED" bone loss with diet, exercise and OSTEOSTRONG. https://osteostrong.me/

I cannot fathom how Bisphosphonates are still legal. They increase bone mass by leaving OLD BONE in place by blocking the UPTAKE and elimination of old bone. As we age, the LAYING DOWN OF NEW BONE is slowed but the UPTAKING of OLD WEAK bone is still normal. SO the net difference is a loss of bone mass. BONIVA, FOSAMAX, RECLAST are Bisphosphonates. A common side effect after a few years on these drugs is SPONTANEOUS FEMUR FRACTURE and potentially JAW FRACTURE (particularly during dental procedures).

Sounds lovely doesn't it? When are we going to treat our ailments without causing even worse ones!

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