Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

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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@dingus

Wow! Thanks everybody for your comments. I had the same response from my doctor, "It's not the Reclast. Go see your primary care doc." My primary care doc just gives me a blank stare. How can you get help when no doctor will at least entertain the thought that it might be the Reclast!! I'm going to another endocrinologist on Monday. I'll see how that goes. In the meantime I'm going to try walking, a heating pad and chlorophyll. And, yes, where do you find chlorophyll? Does it require a prescription?

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Wow!….i also has bad reaction for reclast!…i told my doctor I will not take it again….the reason…..non of them report it. I think we all need to call CDC and report it. I decided to continue of eating healthy, exercising especially weight bearing. I follow BONE COACH. He’s a person that the age of 29 was diagnosed with sever osteoporosis. Good luck

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@heartfelt70

I had the same side effects. Several times I thought I was going to die. I hurt all over as well, but never got dizzy. I am functional,but I know I would be better had I not had Reclast!
I ordered chlorophyll. It is mint flavored. Mix with water and drink. It cleans cells and works on whole body. I use a heating pad often. I had my infusion about three years ago. It was a poison to my body and I will never take it again.

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I had a Reclast infusion in 2018 with no side effects. I had a second infusion on Thursday, August 1 of this year, one month after completing a year of Evenity. That night, I began to feel distressed. By 4:00am, I had a temperature of 101. I continued to have spiking temperatures as high as 103.2 despite taking Tylenol. I was so weak I could barely make it to the bathroom. Couldn’t eat or drink, slept when I could. By Sunday afternoon, I agreed to go to the ED. I was admitted with fever, tachycardia to 120, low BP (85/54). Labs showed anemia, hypokalemia and lowered electrolytes. Other symptoms included episodes of profuse sweating, coughing that was painful to the lungs, labored breathing (O2 at 85) and blurred vision. The docs thought the Reclast was a red herring and that I had a viral upper respiratory infection, due to having a chronic lung condition. I was treated with two IV antibiotics, IV fluids, and Tylenol and discharged with a 14-day prescription of oral antibiotics the following Wednesday. Today, 16 days after the infusion, my temperature is almost normal at 97.2 (by baseline is 96.8). My body is relaxed and I’m enjoying food again. Still tire easily, am fatigued going upstairs and sitting to floss. Because I developed anemia, I Googled Reclast and anemia and found a very long list of side effects. I identified 22. I have no doubt that this acute event was caused by the Reclast.

So what I’m wondering @heartfelt, did the Reclast still prevent bone loss for you, even though you had an adverse reaction? Also wondering what you and your docs decided on treatmentwise since then.

Regarding resolution, I’m drinking a lot of electrolyte water, and will go to the gym for paced treadmill walking and easy leg press to begin to gain strength. Thank you all for sharing and thanks @dingus for posting the question.

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@dingus

Wow! Thanks everybody for your comments. I had the same response from my doctor, "It's not the Reclast. Go see your primary care doc." My primary care doc just gives me a blank stare. How can you get help when no doctor will at least entertain the thought that it might be the Reclast!! I'm going to another endocrinologist on Monday. I'll see how that goes. In the meantime I'm going to try walking, a heating pad and chlorophyll. And, yes, where do you find chlorophyll? Does it require a prescription?

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I have been tired since my first infusion. However, it’s hard to take something out of my body that’s supposed to work for one year. My endocrinologist talked me into it too. What’s your primary care doc going to do? Stare at you and wonder why you are seeing her instead of the endo.

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@roisin11

I had a Reclast infusion in 2018 with no side effects. I had a second infusion on Thursday, August 1 of this year, one month after completing a year of Evenity. That night, I began to feel distressed. By 4:00am, I had a temperature of 101. I continued to have spiking temperatures as high as 103.2 despite taking Tylenol. I was so weak I could barely make it to the bathroom. Couldn’t eat or drink, slept when I could. By Sunday afternoon, I agreed to go to the ED. I was admitted with fever, tachycardia to 120, low BP (85/54). Labs showed anemia, hypokalemia and lowered electrolytes. Other symptoms included episodes of profuse sweating, coughing that was painful to the lungs, labored breathing (O2 at 85) and blurred vision. The docs thought the Reclast was a red herring and that I had a viral upper respiratory infection, due to having a chronic lung condition. I was treated with two IV antibiotics, IV fluids, and Tylenol and discharged with a 14-day prescription of oral antibiotics the following Wednesday. Today, 16 days after the infusion, my temperature is almost normal at 97.2 (by baseline is 96.8). My body is relaxed and I’m enjoying food again. Still tire easily, am fatigued going upstairs and sitting to floss. Because I developed anemia, I Googled Reclast and anemia and found a very long list of side effects. I identified 22. I have no doubt that this acute event was caused by the Reclast.

So what I’m wondering @heartfelt, did the Reclast still prevent bone loss for you, even though you had an adverse reaction? Also wondering what you and your docs decided on treatmentwise since then.

Regarding resolution, I’m drinking a lot of electrolyte water, and will go to the gym for paced treadmill walking and easy leg press to begin to gain strength. Thank you all for sharing and thanks @dingus for posting the question.

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My PCP doesn't do anything. He didn't diagnose. However, since my experience with Reclast, I have not wanted another. I have read and studied and my choice right now is to eat really well, take specific supplements, walk, and I have a weight trainer now.
My second DEXA showed improvement in bone and blood tests showed I wasn't losing calcium in my urine.

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@dingus

Wow! Thanks everybody for your comments. I had the same response from my doctor, "It's not the Reclast. Go see your primary care doc." My primary care doc just gives me a blank stare. How can you get help when no doctor will at least entertain the thought that it might be the Reclast!! I'm going to another endocrinologist on Monday. I'll see how that goes. In the meantime I'm going to try walking, a heating pad and chlorophyll. And, yes, where do you find chlorophyll? Does it require a prescription?

Jump to this post

I called the FDA in Atlanta on the correct line for help. I got a recording. There is no help and if you find any please let me know. No doctor will say it was Reclast. They make money for our taking the infusion.
I eat really well, and cut out specific foods that are bad for bones. I walk and lift weights. I take supplements and I do have chlorophyll that is mixed with water and I drink that. There is a lot of information out there about osteoporosis. There are online groups and special exercise coaches just for people with low bone mass. Check them out. You will find more information online than from any doctor.

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@heartfelt70

I called the FDA in Atlanta on the correct line for help. I got a recording. There is no help and if you find any please let me know. No doctor will say it was Reclast. They make money for our taking the infusion.
I eat really well, and cut out specific foods that are bad for bones. I walk and lift weights. I take supplements and I do have chlorophyll that is mixed with water and I drink that. There is a lot of information out there about osteoporosis. There are online groups and special exercise coaches just for people with low bone mass. Check them out. You will find more information online than from any doctor.

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This appears in the medication guide for Evenity and Prolia. I have not checked other drugs.

"Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA1088."

Please, please do call FDA and report them.

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@normahorn

This appears in the medication guide for Evenity and Prolia. I have not checked other drugs.

"Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA1088."

Please, please do call FDA and report them.

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Why should I not call the FDA? The medicine is poison. I asked my Endocrinologist if a 300 lb person gets the same mgs. in their bag as a 115 lb. person and she said yes. Does that make sense to you?

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@heartfelt70

Why should I not call the FDA? The medicine is poison. I asked my Endocrinologist if a 300 lb person gets the same mgs. in their bag as a 115 lb. person and she said yes. Does that make sense to you?

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If you read my comment, you would see that I recommended reporting the effects to FDA.

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@roisin11

I had a Reclast infusion in 2018 with no side effects. I had a second infusion on Thursday, August 1 of this year, one month after completing a year of Evenity. That night, I began to feel distressed. By 4:00am, I had a temperature of 101. I continued to have spiking temperatures as high as 103.2 despite taking Tylenol. I was so weak I could barely make it to the bathroom. Couldn’t eat or drink, slept when I could. By Sunday afternoon, I agreed to go to the ED. I was admitted with fever, tachycardia to 120, low BP (85/54). Labs showed anemia, hypokalemia and lowered electrolytes. Other symptoms included episodes of profuse sweating, coughing that was painful to the lungs, labored breathing (O2 at 85) and blurred vision. The docs thought the Reclast was a red herring and that I had a viral upper respiratory infection, due to having a chronic lung condition. I was treated with two IV antibiotics, IV fluids, and Tylenol and discharged with a 14-day prescription of oral antibiotics the following Wednesday. Today, 16 days after the infusion, my temperature is almost normal at 97.2 (by baseline is 96.8). My body is relaxed and I’m enjoying food again. Still tire easily, am fatigued going upstairs and sitting to floss. Because I developed anemia, I Googled Reclast and anemia and found a very long list of side effects. I identified 22. I have no doubt that this acute event was caused by the Reclast.

So what I’m wondering @heartfelt, did the Reclast still prevent bone loss for you, even though you had an adverse reaction? Also wondering what you and your docs decided on treatmentwise since then.

Regarding resolution, I’m drinking a lot of electrolyte water, and will go to the gym for paced treadmill walking and easy leg press to begin to gain strength. Thank you all for sharing and thanks @dingus for posting the question.

Jump to this post

my reply disappeared before I finished but won’t repeat will just say— couldn’t sleep night after Reclast infusion, heart beat at 137,,sweating, miserable, Next afternoon went to ED — heart still in tachycardia , now in AFib
also It was terrifying. Got hydration AV and they did all kinds of tests. Sent me home after afib calmed. PA in endo office says never heard of Reclast causing that

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You can report side effects to Medwatch online. You don't have to call. I did this for another medication and they called me to get my doctor's name, and then contacted the doctor for verification. They take issues seriously.
https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
Due to kidney issues and preexisting afib, my doctor had me do a partial dose of Reclast, with IV hydration for an hour and infusion of 1mg (not 5mg) over an hour's time. I will do this every three months and gradually increase dose to 2-3mg with less frequency. My first dose caused a 5 day fever w/fluish symptoms, then some pins and needles and then okay. For me, no biggie. The insert for Reclast lists quite a few possible side effects.

The thing is, for those of us who have done other meds (I did Tymlos 2 years and Evenity 4 months) we risk losing all our gains if we don't do a bisphosphonate. For Prolia users, the risk is even greater without a bisphosphonate. If we also have GERD, Reclast is our only choice.. We have to do it.

If you haven't done any other medications, then the choice is still there, though if bone density is seriously low, I would caution that the fractures I have experienced are life-altering.

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