Reclast - Please share your positive experiences

Posted by jjpoodlespress @jjpoodlespress, Apr 12 12:59pm

Has anyone done well after doing the Reclast Infusion? I am due to do this before the end of April 2025 Kind of scared with hearing all bad side effects and need to hear good news with Reclast?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I truly feel for anyone suffering from these drugs and sincerely hope you get relief soon. The only way I would use ReClast is if I could receive a smaller dosage instead of infusing mega quantities into my body.

I strongly encourage those suffering from adverse effects to report them.
"You may report side effects to FDA at 1-800-FDA-1088." You can also report them on-line via MedWatch, I believe.

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Have any of you suggested to your dr that you take a 6 month dose of Reclast, with a reduced dose? Instead of the 12 month infusion. It is a very powerful drug and being so it seems to be the best one after prolia discontinuance. Also the infusion should take longer than 15 mins. That is far too short a time with this drug.

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I agree with Victor.

This paper shows that half dose is as effective as full dose and lasts a year. That can be monitored with CTX analysis to determine when the next infusion would be warranted.

Shared files

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

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@normahorn

I agree with Victor.

This paper shows that half dose is as effective as full dose and lasts a year. That can be monitored with CTX analysis to determine when the next infusion would be warranted.

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Thanks for the link, @normahorn. I hope those who are considering a lower dose of reclast bring a copy of the pdf to their doctor's appointments. If successful in getting a low dose reclast, please share CTX changes and therapy outcome.

For those who are going to use reclast after prolia cessation, a low dose reclast might need extra monitoring as the timing and magnitude of CTX increase will be unpredictable.

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@jjpoodlespress

Oh dear I feel so uncomfortable with all the possible side effect with Reclast
Thank you so much sharing!

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I am a 73 year old healthy woman. I was diagnosed with osteoporosis thru dexa scan. I had Reclast in December 2024. Except for feeling tired day after infusion, I had no other side effects. I took tylenol day before, day of, and day after infusion. I also drank 64 oz. of water day before, day of, and day after. I still try to drink as much water as I can to protect my kidneys. My next Reclast will be in December of 2025.

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@mayblin

Thanks for the link, @normahorn. I hope those who are considering a lower dose of reclast bring a copy of the pdf to their doctor's appointments. If successful in getting a low dose reclast, please share CTX changes and therapy outcome.

For those who are going to use reclast after prolia cessation, a low dose reclast might need extra monitoring as the timing and magnitude of CTX increase will be unpredictable.

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It may be early to know if the lower dose will provide lasting bone density. This paper states that while there was an increase in bone density on the lower dose it is unknown whether it will have lasting effect. It would be awesome if it does! The study was only for one year, though.

I think the current belief is that the higher dose, maybe even given in multiple lower dose sessions, is what is needed to give the 3-5 year (minimum) benefit. I don’t know if my insurance will pay for multiple lower doses because it is charged as a hospital visit - which is always incredibly expensive. Even if the infusion is given at a clinic or infusion center, those facilities usually bill like a hospital visit- something to do with the quality of care/facility that qualifies them as a “hospital”.

I’m going to ask my endocrinologist before this upcoming infusion. I did ask the cancer enter rheumatologist (who is co-provider for my bone issues) about delaying the third infusion and he stated that it needs to be given three years in a row.

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@triciaot

It may be early to know if the lower dose will provide lasting bone density. This paper states that while there was an increase in bone density on the lower dose it is unknown whether it will have lasting effect. It would be awesome if it does! The study was only for one year, though.

I think the current belief is that the higher dose, maybe even given in multiple lower dose sessions, is what is needed to give the 3-5 year (minimum) benefit. I don’t know if my insurance will pay for multiple lower doses because it is charged as a hospital visit - which is always incredibly expensive. Even if the infusion is given at a clinic or infusion center, those facilities usually bill like a hospital visit- something to do with the quality of care/facility that qualifies them as a “hospital”.

I’m going to ask my endocrinologist before this upcoming infusion. I did ask the cancer enter rheumatologist (who is co-provider for my bone issues) about delaying the third infusion and he stated that it needs to be given three years in a row.

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I will risk your concerns to escape being overdosed with a toxic substance by the one-size-fits-all mind set that exists. This atuff stays in one's body for something like 10 years.

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@normahorn

I agree with Victor.

This paper shows that half dose is as effective as full dose and lasts a year. That can be monitored with CTX analysis to determine when the next infusion would be warranted.

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CTX analysis meaning? Thank you.

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I had my first reclast infusion in Oct . 2024 after a year on Evenity. I drank water constantly the day before, the day after, and I continue to drink water daily. I took one or 2 Tylenol proactively. I had no problem with the infusion, but I still worry about the long term side effects down the road.

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@babby

I had a Reclast Infusion 4/1/25 and I have been feeling poorly since and today is 4/13. I got the pain in the left eyeball and thought m head was going to explode the day after infusion. I too saw eye doc and he did not see that I needed steroid drops. The pain finally subsided but it went to back of neck & shoulder . Then it went from there after 3 days into my right jaw where I had teeth removed (I was on Prolia and used oral surgeon one year before). It has subsided after 3 days. I’m better today but still feel crummy. Pain has subsided🤞I am a long term chronic pain patient on pain meds as well. I will tell you I had to use six Tylenol 500 mg each for two days and least two 500 mg since the infusion with normal pain meds. This morning I woke up headache free and yesterday. I’m hoping I can do a little housework starting tomorrow. This will be 12 days in bed mostly for me. I suffered agonizing bone pain with Prolia (4 shots over 2 yrs. Pain started last year so I refused to take. Due to fracture risk they put me on this and I’m reluctant to do it again) Prolia about killed me last year. I couldn’t bend over to pick something off floor and woke up in morning not knowing if I could get up in so much pain. I really thought I was going to die (it was so bad). I couldn’t walk. I missed Christmas and New Years with family. Too much pain. I am hoping to feel better, but I can’t hold my breath. I’ll update in a few days. These drugs are powerful and I wish I had never heard of them. Now I’m stuck because I have spondylitis, severe scoliosis and no space disk in back. Oh and I want to mention my hands hurt so bad I couldn’t cook for several days. It’s been hell for me. Think twice before you do these drugs. It’s a lifetime you have to continue.

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I have been switched to Prolia--2 injections a year. If I have any serious reaction after the first injection, I am stopping all osteoporosis treatment. That is criminal that you were not given steroid drops and oral steroid tablets for your eye situation. My eye pain and swelling went down very quickly after I started that treatment.

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