Tips for Reclast Injection

Posted by aspirecreative @aspirecreative, Feb 25 6:28pm

I will have my 12th Evenity injections next month. I had a DEXA and my spine improved significantly, but no other changes. I plan to start Reclast one month after my last Evenity shots. Does anyone have tips for making the infusion go well? I found with Evenity that taking Claritan the day of, and a day after helped with considerably with site swelling. I am wondering what tips others have for heading off Reclast side effects. Thank you.

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Profile picture for prarysky @prarysky

@harborside24
Thank you for finding this particular post which is the closest thing to a peer-reviewed article I've been able to find to present to my doctor. Thank god Endodoc provided this critical protocol, though I wish we could identify the original trial research citation. I made a copy of this protocol and presented it to my oncology PA who ordered my infusion. In my case it was for Zometa rather than Reclast.

It was unclear to me whether the nurse doing the infusion diluted the Zometa as described. I got the feeling she did not but set me up with what was provided. Because I was not sure about whether it was diluted per this protocol, I requested a saline flush both before and after. I must have read that as a suggestion somewhere and asked for it because I don't know if the nurse would have done that just because I requested it.

My infusion was almost an hour. Lots of hydration, tylenol, etc. My nurse did not give me a tylenol during the infusion, if I recall correctly,, but I did take it on my own. I do not recall any major side effects.

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@prarysky, the recommendation comes from a single knowledgeable bone expert who devised the method for his own patients, There wasn't formal research, a trial or a formally published citation.

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This thread has been encouraging to me to read, as I have deep concerns about many of the osteoporosis meds being offered. My doc wants me to get the Reclast infusion and I will discuss with her what I have read here. My next question to those who have followed this protocol for Reclast infusion is -- did you have any side effects in the months following that would lead you not to recommend this medicine?

Thank you in advance for your responses.

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Profile picture for prarysky @prarysky

You echo my thoughts exactly! I hope some of our clinicians apply what we recommend for ourselves to others, or at least are more receptive to investigating the merits of what we want and why. You've consistently posted about this protocol throughout many discussions. Hats off to you for educating so many of us about something we can use to try and protect ourselves when we have to have a Reclast/Zometa infusion.

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@prarysky I know that not everyone will have a positive experience with Reclast, as our bodies are all different/we have varying medical issues. But I firmly believe that docs not telling patients how to properly prep for it, as well as not ordering at least a 30 minute infusion, have something to do with these negative reactions. My next infusion will be in August, and I will prepare the same way and make sure the doctor orders a longer infusion for me. I'm praying that my body will respond just as it did this past July. Time will tell.

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Profile picture for gently @gently

@prarysky, the recommendation comes from a single knowledgeable bone expert who devised the method for his own patients, There wasn't formal research, a trial or a formally published citation.

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@gently Thank you for clarifying the background on this. Still wish we knew who it was, though I respect his wish for anonymity. So appreciate his sharing of his expertise and experience. Without that, I think many of us might have had a very different experience.

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Profile picture for harborside24 @harborside24

@harborside24 I have been searching for this post by @gently and finally found it. Endodoc contributes to this website as well as the Inspire website which has information about osteoporosis. This is from @gently and is for anyone whose doc is hesitant to order more than a 15 minute infusion...

I'm copying a helpful note from the md who led the trials on Reclast in case you haven't seen it.

"My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the endodoc recnow 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.Best, Endodoc"

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@harborside24 Wow, this is interesting. Do we know who EndoDoc is?

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Profile picture for harborside24 @harborside24

@prarysky Wonderful! I, too, had the saline before and after the infusion. It is standard practice where I go. Thank you for contacting me. It warms my heart to think that we are all helping each other with this. But I'm angry about the number of docs and infusion centers that don't seem to have a clue how this infusion is to be administered. How many patients are out there who were never told how to prepare or what the infusion process should be? And how many of those patients possibly suffered needlessly? I will never forget my endocrinologist telling me that "infusion centers are not all equal"...boy, was there truth to that!

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@harborside24 My doc said she would only order the saline for patients with kidney problems.

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Profile picture for harborside24 @harborside24

@harborside24 I have been searching for this post by @gently and finally found it. Endodoc contributes to this website as well as the Inspire website which has information about osteoporosis. This is from @gently and is for anyone whose doc is hesitant to order more than a 15 minute infusion...

I'm copying a helpful note from the md who led the trials on Reclast in case you haven't seen it.

"My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the endodoc recnow 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.Best, Endodoc"

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@harborside24

I think if I had the name of EndoDoc that I might be able to get my doc's attention...

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Profile picture for aspirecreative @aspirecreative

@harborside24 Wow, this is interesting. Do we know who EndoDoc is?

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@aspirecreative I have wondered that, too…no idea.

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Profile picture for aspirecreative @aspirecreative

@harborside24 My doc said she would only order the saline for patients with kidney problems.

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@aspirecreative Oh, brother!

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Profile picture for oakmary2 @oakmary2

This thread has been encouraging to me to read, as I have deep concerns about many of the osteoporosis meds being offered. My doc wants me to get the Reclast infusion and I will discuss with her what I have read here. My next question to those who have followed this protocol for Reclast infusion is -- did you have any side effects in the months following that would lead you not to recommend this medicine?

Thank you in advance for your responses.

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Hello @oakmary2,

A diagnosis of Osteoporosis can carry a lot of stigma and anxiety. Osteoporosis medications are strong medications that sometimes carry side effects for a small percentage of patients who take them. There are only a few osteoporosis medications that are FDA approved and it is best to work with your provider to decide which is best for you.

Mayo Clinic Connect is a place for members to share their experiences so that members are able to make more informed decisions, but more importantly have more informed conversations with their providers. It is important to make sure you keep your provider as part of your treatment as Mayo Clinic Connect cannot substitute for professional advice.

Here are some articles from Mayo Clinic that may help as well:

"Osteoporosis treatment: Medications can help"
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
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"Natural vs. safe: Why the two aren't the same"
- https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/in-depth/natural-vs-safe-health-remedies/art-20587690
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"Exercising with osteoporosis: Stay active the safe way"
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

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