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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@suzyr54mayo

I had a Reclast infusion in mid October (2024). First few days were fine. At about 10 days to 2 weeks my right knee joint began swelling and it was quite painful. As that eased my left knee started swelling, then my left ankle and the tissue above it became somewhat mottled. A week or so later my left thumb joint started swelling. I saw my primary Dr.'s PA and her first words were: We cannot flush this from your system and we don't give pain meds. I DID NOT ask for pain meds. When I asked her how long these symptoms would last she told me there was no literature on long term side effects. I now have moderate nausea and asthma as well. I went to a trusted accupuncturist and she told me I literally had a systemic allergic reaction. Yesterday, I went back to her for the asthma and she did a treatment and sent me home with a powder to mix with water and consume 3x a day. I'm experiencing a lot of fatigue as well. This is my experience. I've read on a couple of other sites that some women are having symptoms as long as 3 years later. If this drug is so good why is it feel like I have been poisoned?

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I had my First Reclast Nov 19th 2024. At 9 am. Exactly 12 hours later no warning no nothing. I walked into the bathroom and passed out. Hit my head pretty hard. It still hurts alittle. I also held onto a fever of 101.3 for 2 days. Chills trembling hot very achy. Today I’m tired easily and I have worse body pains ever. No more Reclast for me.

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@debis67

I had my First Reclast Nov 19th 2024. At 9 am. Exactly 12 hours later no warning no nothing. I walked into the bathroom and passed out. Hit my head pretty hard. It still hurts alittle. I also held onto a fever of 101.3 for 2 days. Chills trembling hot very achy. Today I’m tired easily and I have worse body pains ever. No more Reclast for me.

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Put me in the ER it’s poison! I will never take another dose. 3 years ago and my body has not been the same.

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@bluebonnet242

I had bookmarked this information from a previous post @gently made regarding reclast infusion. I didn’t copy the entire post, just the information pertinent to reclast infusion instructions.

From @gently
I have some advice from a doctor at Stanford about how to take Reclast to diminish side effects. He ran the clinical trials on Reclast. So this passage which I quote is meticulous. Don't let the complexity stir you against the drug. You might print the instructions and give them to the prescribing administering medical personnel, if you decide on Reclast. He also prefers Reclast after the full Forteo or Tymlos 18 months.
I won't take Evenity or Prolia. Although, if there were nothing else. . . I'm no so happy about the mechanism of action of the bisphosphonates. And am trying to figure a way without them.

"Have the infusion nurse dilute the 5mg in 100m LD5W into 500mLof NS so that the now 600mL infuses over 60 minutes.
Making the N-BP liss concentrated and infusing it more slowly substantially improves the renal safety based on data.
Administer 650mg of acetaminophen at the same time of the infusion and instruct the patient to take the same dose with dinner and at bedtime the day of the infusion, and with all three meals and at bedtime the day after the infusion, and a final dose with breakfast the 2nd morning after the infusion. This reduces the risk of a symptomatic acute phase reaction (APR) from about 22% to < 1%.
The 3rd thing I do is repeat the BTM (bone turnover markers) U, NTx and serum BSAP 4-6 weeks after the infusion to assess the maximal effect of bone turnover rate. This serves as a comparison when I repeat BTMs 12 months after the infusion. In my extensive 32 years of experience with IV bisphosphonates the average woman only needs a second infusion after an average of 24 months."

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Is there a link to the article that quotes this doctor. I would like to contact my doctor about a longer infusion time but I don't think "something I read on the internet" is going to do it for her. I am very worried about side effects and if a longer infusion time would help, I would like to do that.

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@debis67

I had my First Reclast Nov 19th 2024. At 9 am. Exactly 12 hours later no warning no nothing. I walked into the bathroom and passed out. Hit my head pretty hard. It still hurts alittle. I also held onto a fever of 101.3 for 2 days. Chills trembling hot very achy. Today I’m tired easily and I have worse body pains ever. No more Reclast for me.

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Have you now recovered. My doctor has recommended this for me and I am scared!

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@katgirl

Is there a link to the article that quotes this doctor. I would like to contact my doctor about a longer infusion time but I don't think "something I read on the internet" is going to do it for her. I am very worried about side effects and if a longer infusion time would help, I would like to do that.

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Something else to consider is lower dosage. ( I hope I attached the correct article.)

Shared files

low-dose reclast (low-dose-reclast-1.pdf)

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@normahorn

Something else to consider is lower dosage. ( I hope I attached the correct article.)

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Thank you for taking the time to post this! But I know she won't go for a lower dose when that is not recommended by the manufacturer of the drug.
But a lower infusion time to help with side effects she might be willing to do. But I would need an article backing this up.
I am noticing that a lot of people are going to endocrinologists about this. My GP is the one who is recommending this. I am only 56. I wonder if I should be consulting with a specialist? My infusion is scheduled for January 3rd. I would have preferred to get it before the end of the year (because my deductible has been satisfied) but I don't have any time to be sick from side effects until after the holidays.

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@katgirl

Thank you for taking the time to post this! But I know she won't go for a lower dose when that is not recommended by the manufacturer of the drug.
But a lower infusion time to help with side effects she might be willing to do. But I would need an article backing this up.
I am noticing that a lot of people are going to endocrinologists about this. My GP is the one who is recommending this. I am only 56. I wonder if I should be consulting with a specialist? My infusion is scheduled for January 3rd. I would have preferred to get it before the end of the year (because my deductible has been satisfied) but I don't have any time to be sick from side effects until after the holidays.

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I had no problem getting an hour infusion. Technicians administering Reclast were very accommodating. I would definitely ask for it.

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@dna41

I had no problem getting an hour infusion. Technicians administering Reclast were very accommodating. I would definitely ask for it.

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The place I’m going just keeps saying 15 minutes. I now regret going with a very a small infusion center rather than at the hospital clinic.

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@katgirl

The place I’m going just keeps saying 15 minutes. I now regret going with a very a small infusion center rather than at the hospital clinic.

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@katgirl I think it works better to have the doctor order the longer infusion in advance because the infusion centers have schedules and a lot of cancer patients are also there for infusions.

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@windyshores

@katgirl I think it works better to have the doctor order the longer infusion in advance because the infusion centers have schedules and a lot of cancer patients are also there for infusions.

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Totally agree.! Which is why in my earlier post I was looking for an article/data about less side effects with a longer infusion to send my doctor to see if she will make the infusion longer. (A previous responder was the one who suggested that I just ask the infusion place to lengthen the session. ).

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