1. < Osteoporosis & Bone Health

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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heartfelt70 | @heartfelt70 | Aug 18 11:01am
In reply to @normahorn "If you read my comment, you would see that I recommended reporting the effects to FDA." + (show)
@normahorn

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

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Forgive me, I read incorrectly, and I am glad I did.
I don't really think I could endure for a second time what was experienced the first infusion. It was horrific.

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lkhender | @lkhender | Aug 18 6:37pm
In reply to @normajean77 "I had very severe reactions to Reclast. The FDA insert said to expect some joint pain..." + (show)
@normajean77

I had very severe reactions to Reclast. The FDA insert said to expect some joint pain 2-3 days after, which I had. Then, things were ok for about a week and a half. Then, one morning, I woke up in severe joint pain ALL OVER! It was so bad, I could not get out of bed. Called my endocrinologist and of course, she said she’s never heard of this. I read the FDA Drug insert for Reclast and yes, there were a percentage of patients with this severe joint pain following the IV Infusion. All I can say is I will never, ever take that infusion again!
I believe each one of you saying you had pain after this infusion. It’s poisonous!

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@normajean77 I totally concur with your opinion!

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lkhender | @lkhender | Aug 18 7:07pm

@windyshores thanks for providing the Medwatch website. I have now reported my reaction and side effects. Hopefully this will help if we all report.

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doreenc | @doreenc | Aug 19 8:35am
In reply to @windyshores "I wish doctors would google side effects! A pharmacist might be better to talk to :)" + (show)
@windyshores

I wish doctors would google side effects! A pharmacist might be better to talk to 🙂

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Actually when I have questions about a medication, I always go to my pharmacist and not my doctor. I'm convinced doctors are completely clueless about the medications they prescribe and their side effects. For example, my MIL took Gabapentin for shingles pain for months. When she decided to stop it, she went through severe withdrawals. When she asked her doctor about this, he knew NOTHING about withdrawal symptoms (unbelievable but true). She had to wean herself off the drug over the course of a few weeks following protocols found on the internet.

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2 replies
windyshores | @windyshores | Aug 19 8:54am
In reply to @doreenc "Actually when I have questions about a medication, I always go to my pharmacist and not..." + (show)
@doreenc

Actually when I have questions about a medication, I always go to my pharmacist and not my doctor. I'm convinced doctors are completely clueless about the medications they prescribe and their side effects. For example, my MIL took Gabapentin for shingles pain for months. When she decided to stop it, she went through severe withdrawals. When she asked her doctor about this, he knew NOTHING about withdrawal symptoms (unbelievable but true). She had to wean herself off the drug over the course of a few weeks following protocols found on the internet.

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@doreenc pharmacists are underused. I also always talk with a pharmacist and suggest it whenever appropriate on Connect. Your example is distressing but helpful!

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roisin11 | @roisin11 | Aug 19 9:25am
In reply to @heartfelt70 "My PCP doesn't do anything. He didn't diagnose. However, since my experience with Reclast, I have..." + (show)
@heartfelt70

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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Thank you for sharing. That’s helpful. It’s great that you’re improving without meds.

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roisin11 | @roisin11 | Aug 19 9:36am
In reply to @sessioja "my reply disappeared before I finished but won’t repeat will just say— couldn’t sleep night after..." + (show)
@sessioja

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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Sounds very similar to my experience. I appreciate your sharing this.

Did you get a Dexa since then? If so, did the Reclast work?

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roisin11 | @roisin11 | Aug 19 9:44am
In reply to @doreenc "Actually when I have questions about a medication, I always go to my pharmacist and not..." + (show)
@doreenc

Actually when I have questions about a medication, I always go to my pharmacist and not my doctor. I'm convinced doctors are completely clueless about the medications they prescribe and their side effects. For example, my MIL took Gabapentin for shingles pain for months. When she decided to stop it, she went through severe withdrawals. When she asked her doctor about this, he knew NOTHING about withdrawal symptoms (unbelievable but true). She had to wean herself off the drug over the course of a few weeks following protocols found on the internet.

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I messaged both my endocrinologist and rheumatologist about the adverse reaction to Reclast. I’ll post their responses, and report it to the FDA.

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pacred | @pacred | Aug 19 10:58am

I am scheduled for my 1st reclast infusion in September. I am allergic to aspirin which is salicylic acid. I get hives and rashes when I take aspirin. I've read that people with sensitivity to salicylic acid take caution with reclast. Does anyone in the group with allergy to aspirin ever had reclast?

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1 reply
awfultruth | @awfultruth | Aug 19 11:45am
In reply to @windyshores "You can report side effects to Medwatch online. You don't have to call. I did this..." + (show)
@windyshores

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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@windyshores It has finally become clear to me that the dosages of the drugs available are not chosen based on what's good for the individual. Instead the dosages reflect economic interests and what "they" think will work best for all women with osteoporosis assuming that treatment will not be individualized and nuanced.
For instance, as long ago as 2002 they did a study showing you get almost identical results with Reclast dosages ranging from 0.25 mg to 4 mg with dosing schedules varied depending on the size of the dose. By dosing 0.25 mg at 3 months they accomplished the same bone benefits as 4 mg at one year. So a total of 1 mg in a year got the same result as 4 mg in one year. But what was desired by the various researchers and experts was it seems to improve compliance and convenience and reduce cost and produce the greatest good for all. Assuming of course that there is no health impact of using 4 times more of a drug than necessary to produce the same effect.
"Women received placebo or intravenous zoledronic
acid in doses of 0.25 mg, 0.5 mg, or 1 mg at three month intervals. In addition, one group received a total annual dose of 4 mg as a single dose, and another
received two doses of 2 mg each, six months apart.
Lumbar-spine bone mineral density was the primary end point. There were similar increases in bone mineral density in all the zoledronic acid groups".
See https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807?download=true
There is a paywall for the New England Journal of Medicine (NEJM) but you can create a free account and get 3 free reads a month. That's how I got this paper.
I there are one or two more papers related to this that I have to finish checking out.
Thanks Windy for all your input on this forum.

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