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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So an update. I did my first Reclast Infusion three weeks ago. I did follow the Tylenol and hydration suggestions and they worked for prep, Day of and day after the infusion. Except on the second day, I didn’t follow the routine of staying on the Tylenol and lots of water and I felt like I had the flu … achy with light fever. Got back on program and it passed quickly. Stopped the Tylenol on day four. Three weeks out I am still feeling fine, so hopefully it will all stay this way. Hoping to see that the Reclast helps hold the progress that using Forteo for two years made possible.

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Hi I’m new to the site. I’ve been hypothyroid for over 25 yrs. my density score was -3.3 w/ no hx of fx therefore I was hoping to begin Forteo or Tymlos. I will find out definitively on Monday however am expecting to hear that infusion biophosphates (Reclast recommended) are likely to be my only options as I’ve had gastric surgery and due to a malabsorption syndrome, orals are a non-option. My bone alkaline phospatase is more than twice the high end of normal so I’m having a bone scan tomorrow to r/o Paget’s disease of the bone, which confirms that infusion biophosohates are what I’m limited to.
I realize some do well on Reclast, but I’ve also heard absolute horrific side effects people have suffered from this drug, some long-term. I can’t risk not caring for myself because I also share in caring fir my 89y/o mother so being in capacities or debilitated is not possible for me.

The risk of terrible side effects are what I’m concerned w/ given I’ve tended to be sensitive to medications and medication reactions in the past. How did you asses if you were more or less at risk for the more serious side effects?

Has anyone w/ medication sensitivity found recast side effects to be a problem?

I realize people can prepare in advance of the infusion but because of my malabsorption issues, I’m concerned my system won’t allow for adequate retention to potentially ward-off problems? Has anyone had this problem?

I realize I’ve asked a lot..however I had mentally prepared for one drug..now it looks like not only am I looking an entire other drug and one I never wanted to take, but possibly a dx I’m not quite prepared for either on top of the osteoporosis. I’ll know for certain on Monday..
Thank you all.. Toni

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@joanme

Day 2 taking the Tylenol as recommended. Still somewhat exhausted, though I was able to go for two brisk walks and out to dinner with a friend I hadn’t seen since pp (pre-pandemic). Now I feel like I could sleep for 12 hours.

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@contentandwell @jmanj I followed the Tylenol and hydration without a break. Nonetheless, I was hit with side effects on day two. At 4:30 AM last night I was awakened with shaking chills and a fever of 101.3. My whole body was shaking uncontrollably to the point it was difficult walking to get to the bathroom. I also became nauseated. I took some more Tylenol for the fever and an Ativan for the nausea. Sat in the bathroom sipping Ginger Baker for two hours. The nausea abated and I was finally able to get back to sleep ~6:30AM. I slept until 1130, but didn’t get out of bed until 130. I felt much better, my fever was gone, the nausea was still gone. I was pretty wiped out. I passed the 48 hour mark and have not gotten worse. I never had joint pain or bone pain or muscle pain and hoping I will be fine until next year.

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@joanme

@contentandwell @jmanj I followed the Tylenol and hydration without a break. Nonetheless, I was hit with side effects on day two. At 4:30 AM last night I was awakened with shaking chills and a fever of 101.3. My whole body was shaking uncontrollably to the point it was difficult walking to get to the bathroom. I also became nauseated. I took some more Tylenol for the fever and an Ativan for the nausea. Sat in the bathroom sipping Ginger Baker for two hours. The nausea abated and I was finally able to get back to sleep ~6:30AM. I slept until 1130, but didn’t get out of bed until 130. I felt much better, my fever was gone, the nausea was still gone. I was pretty wiped out. I passed the 48 hour mark and have not gotten worse. I never had joint pain or bone pain or muscle pain and hoping I will be fine until next year.

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Hi Joanne, I’m sorry you had a really bad couple of days despite following the hydration recommendations. Perhaps your good preparation kept the bone and muscle pain at bay..I’m hoping. It’s encouraging to know you seem to coming out of the worst and headed for many better healthy days ahead.

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@pink0509

Hi Joanne, I’m sorry you had a really bad couple of days despite following the hydration recommendations. Perhaps your good preparation kept the bone and muscle pain at bay..I’m hoping. It’s encouraging to know you seem to coming out of the worst and headed for many better healthy days ahead.

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@pink0509 @contentandwell @jmanj thank you! To be clear, I really wanted @jmanj to know it may not have been missing the Tylenol that resulted in symptoms. The physician who wrote that for patients suggested it would reduce the risk of symptoms, but not that you wouldn’t have them.

I was pretty miserable for a couple of hours, but I didn’t have flu like symptoms for 24-48 hours and you’re right, for that I’m grateful. I’m still a bit tired, but I’m ok with that.

Interestingly, the doc I spoke with in the afternoon who was covering said it sounded like a classic reaction to Reclast and I might want to consider that and might not want to take it next year, which stunned me. I said I was thinking of it much the same as a COVID vaccine - which was the greater risk, having temporary side effects of getting COVID. That it seemed to me a fracture was the greater risk. When I thought about it I was angry and felt she was suggesting I might not want to continue, which would increase my risk.

I did stop the Alendronate because the side effects were so bad (still not completely resolved). But this experience would not stop me from getting Reclast next year. I agree with you that the hydration and Tylenol may well have kept the bone and muscle pain at bay. So far I’ve had no pain 🤞🏼 and very much appreciate your support.

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@joanme

@pink0509 @contentandwell @jmanj thank you! To be clear, I really wanted @jmanj to know it may not have been missing the Tylenol that resulted in symptoms. The physician who wrote that for patients suggested it would reduce the risk of symptoms, but not that you wouldn’t have them.

I was pretty miserable for a couple of hours, but I didn’t have flu like symptoms for 24-48 hours and you’re right, for that I’m grateful. I’m still a bit tired, but I’m ok with that.

Interestingly, the doc I spoke with in the afternoon who was covering said it sounded like a classic reaction to Reclast and I might want to consider that and might not want to take it next year, which stunned me. I said I was thinking of it much the same as a COVID vaccine - which was the greater risk, having temporary side effects of getting COVID. That it seemed to me a fracture was the greater risk. When I thought about it I was angry and felt she was suggesting I might not want to continue, which would increase my risk.

I did stop the Alendronate because the side effects were so bad (still not completely resolved). But this experience would not stop me from getting Reclast next year. I agree with you that the hydration and Tylenol may well have kept the bone and muscle pain at bay. So far I’ve had no pain 🤞🏼 and very much appreciate your support.

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I’m really surprised to hear that an MD would discourage you from continuing next year. While you certainly experienced some difficult few days, the worst of those issues prayerfully seemed to have now subsided. Yes, others may have experienced worse effects from the drug, but if you’ve done relatively well, why not encourage you…seems counterintuitive to what a reasonable should be doing?
I experienced flu-like symptoms following my Covid vaccine but, I still took the 2nd shot and can’t wait until a booster is recommended if it would mean warding off this horrid virus! I’d do the same w/ taking the 2nd round of Reclast if I were you.
I will find out on Monday if Reclast is definitively what’s recommended for me, likely so. If so, I will do my utmost to prep for the infusion and pray that any post-effects are as minimal as possible.
Of course I’m torn as to whether to take this drug, as have of all of us who have had to make this difficult decision, but to continue to have my scores decline as they’ve done year on year frightens me horribly as well. I’m going to work on holistic approaches over the next year in combination w/ the drug however unfortunately I’m at the point that I’ve waited too long to address this problem,
to rely on holistic alone to improve my scores fast enough before I have an incident.
Please continue to let us know how you’re doing…hopefully better each day! Toni

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@joanme

@pink0509 @contentandwell @jmanj thank you! To be clear, I really wanted @jmanj to know it may not have been missing the Tylenol that resulted in symptoms. The physician who wrote that for patients suggested it would reduce the risk of symptoms, but not that you wouldn’t have them.

I was pretty miserable for a couple of hours, but I didn’t have flu like symptoms for 24-48 hours and you’re right, for that I’m grateful. I’m still a bit tired, but I’m ok with that.

Interestingly, the doc I spoke with in the afternoon who was covering said it sounded like a classic reaction to Reclast and I might want to consider that and might not want to take it next year, which stunned me. I said I was thinking of it much the same as a COVID vaccine - which was the greater risk, having temporary side effects of getting COVID. That it seemed to me a fracture was the greater risk. When I thought about it I was angry and felt she was suggesting I might not want to continue, which would increase my risk.

I did stop the Alendronate because the side effects were so bad (still not completely resolved). But this experience would not stop me from getting Reclast next year. I agree with you that the hydration and Tylenol may well have kept the bone and muscle pain at bay. So far I’ve had no pain 🤞🏼 and very much appreciate your support.

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I’m with you on this. If those are the only symptoms / reactions I experience from Reclast it will not stop me from doing it again. Everything we do has pros and cons, pluses and minuses. It is up to each of us to figure out what the best approach is for our issues. Having input from others is certainly part of that the decision process, along with personal research. I don’t want to lose the progress I made by doing Forteo for two years, and Reclast is supposed to be what will help hold the line. Of course, along with continued exercise and healthy eating!

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People complain of terrible weight again w/ Forteo, did you experience that?

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@pink0509

People complain of terrible weight again w/ Forteo, did you experience that?

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I had zero problems with Forteo. Other than a rare pinch from the shot, or an equally rare bruise at the injection site. Overall had 12% increase in spine and 5% in hip.

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Hi everyone, it seems that most of you are in favor of Reclast and the side effects can be minimized with hydration and Tylenol. I’m beginning to think i may need to change from Fosamax because the timing of it with my other medications is driving me nuts! Your info has helped. Thanks!

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