Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

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

I finally mad an appointment did my first Reclast infusion July 13 after a long discussion with my endocrinologist. We looked at the pros and cons of all the options as I can’t take oral Alendronate due to GI side effects. She was very honest, made the same suggestions I’ve read here about hydration, etc. she said about 70-75% of her patients do experience flu like symptoms for up to two weeks (not usually that long) that are generally well controlled. She acknowledged longer term more severe pain discussed here as a rare side effect and has not seen it in her practice. I’m hoping not to be the first. The benefits far outweigh the risk atm, so biting the bullet and made the appointment.

Any and all suggestions both to prepare and to minimize side effects would be more than welcome and appreciated!

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After completing two years of Forteo (with zero side effects the whole time) I’m headed in for a Reclast infusion. Hope to have the good experience several of you have described!

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@joanme

I finally mad an appointment did my first Reclast infusion July 13 after a long discussion with my endocrinologist. We looked at the pros and cons of all the options as I can’t take oral Alendronate due to GI side effects. She was very honest, made the same suggestions I’ve read here about hydration, etc. she said about 70-75% of her patients do experience flu like symptoms for up to two weeks (not usually that long) that are generally well controlled. She acknowledged longer term more severe pain discussed here as a rare side effect and has not seen it in her practice. I’m hoping not to be the first. The benefits far outweigh the risk atm, so biting the bullet and made the appointment.

Any and all suggestions both to prepare and to minimize side effects would be more than welcome and appreciated!

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I have looked at comments posted on the Osteoporosis Foundation discussion forum. One person repeated helpful information about avoiding the acute phase reaction. It includes recommendations about Tylenol and vitamin D. Others have included suggestions about serious hydration before hand and adequate Calcium supplements:
'Here is part of a post entered by a member called Endodoc some time ago. :
"I'm pleased that your physician's recommended Tylenol; (acetaminophen) in addition to being well hydrated when you have your Reclast infusion. I always instruct the infusion nurses to provide 2 acetaminophen tablets (total 650 mg) to patients before the start of the infusion, and instruct the patients to then take the same dose with dinner & at bedtime the day of the infusion, with all 3 meals and at bedtime the following day, and a final dose at breakfast the 2nd morning after the infusion. Taking these 7 doses of "Tylenol" reduces the risk of a symptomatic APR (acute phase response, e.g., fever & muscle/bone aches & pains) from about a 20% (1 in 5) chance down to less than 1%. Also, it is imperative to know your vitamin D level before getting the infusion (assuming it hasn't been checked in the past couple of years). As the treatment is rarely (if ever) an emergency, i always make sure my patients have vitamin D levels in the mid-optimal range (around 40-50 ng/mL) prior to bisphosphonate therapy (especially Reclast). Even if one's level is 18, 5-6 weeks of replacement can bring it up to > 30 ng/mL."'

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@colleenyoung

Hi exaustef, welcome. You're asking great questions as you consider starting Reclast. I moved your message to this discussion where @bonnieh218 @becsbuddy @julie2020 @fiesty76 @felicitypevancy @grazia99 and others are sharing their experiences with Reclast and osteoporosis, and may be able to answer your questions.

As you wait for responses, I also suggest reading through the past posts.

Exaustef, have you been on other medications for osteoporosis? Did your doctor suggest a longer infusion time?

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Years ago I was on methotrexate & fosamaxand the osteoporosis disappeared and now it is osteopenia - of course always confuses me.

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@colleenyoung

Hi exaustef, welcome. You're asking great questions as you consider starting Reclast. I moved your message to this discussion where @bonnieh218 @becsbuddy @julie2020 @fiesty76 @felicitypevancy @grazia99 and others are sharing their experiences with Reclast and osteoporosis, and may be able to answer your questions.

As you wait for responses, I also suggest reading through the past posts.

Exaustef, have you been on other medications for osteoporosis? Did your doctor suggest a longer infusion time?

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HI, @exaustef i have not been on Reclast; I’ve used Fosamax for almost 4 years now. My biggest complaint is needing to wait for an annual DEXA scan. Sorry i cant help with your Reclast question!

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@felicitypevancy

I have looked at comments posted on the Osteoporosis Foundation discussion forum. One person repeated helpful information about avoiding the acute phase reaction. It includes recommendations about Tylenol and vitamin D. Others have included suggestions about serious hydration before hand and adequate Calcium supplements:
'Here is part of a post entered by a member called Endodoc some time ago. :
"I'm pleased that your physician's recommended Tylenol; (acetaminophen) in addition to being well hydrated when you have your Reclast infusion. I always instruct the infusion nurses to provide 2 acetaminophen tablets (total 650 mg) to patients before the start of the infusion, and instruct the patients to then take the same dose with dinner & at bedtime the day of the infusion, with all 3 meals and at bedtime the following day, and a final dose at breakfast the 2nd morning after the infusion. Taking these 7 doses of "Tylenol" reduces the risk of a symptomatic APR (acute phase response, e.g., fever & muscle/bone aches & pains) from about a 20% (1 in 5) chance down to less than 1%. Also, it is imperative to know your vitamin D level before getting the infusion (assuming it hasn't been checked in the past couple of years). As the treatment is rarely (if ever) an emergency, i always make sure my patients have vitamin D levels in the mid-optimal range (around 40-50 ng/mL) prior to bisphosphonate therapy (especially Reclast). Even if one's level is 18, 5-6 weeks of replacement can bring it up to > 30 ng/mL."'

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Thank you!!

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@felicitypevancy

Thank you for responding. I have not started Reclast yet. I realize there are risks/benefits to all medications. There seems to be good protocols that help to avoid the acute reactions in the first 3-14 days after the initial infusion, (adequate hydration, calcium and vitamin D and tylenol). I was really wondering about peoples experience of successful treatments for the long term side effects, particularly the various types of pain.

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I have had two infusions of Reclast with no side effects.

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@felicitypevancy

I have looked at comments posted on the Osteoporosis Foundation discussion forum. One person repeated helpful information about avoiding the acute phase reaction. It includes recommendations about Tylenol and vitamin D. Others have included suggestions about serious hydration before hand and adequate Calcium supplements:
'Here is part of a post entered by a member called Endodoc some time ago. :
"I'm pleased that your physician's recommended Tylenol; (acetaminophen) in addition to being well hydrated when you have your Reclast infusion. I always instruct the infusion nurses to provide 2 acetaminophen tablets (total 650 mg) to patients before the start of the infusion, and instruct the patients to then take the same dose with dinner & at bedtime the day of the infusion, with all 3 meals and at bedtime the following day, and a final dose at breakfast the 2nd morning after the infusion. Taking these 7 doses of "Tylenol" reduces the risk of a symptomatic APR (acute phase response, e.g., fever & muscle/bone aches & pains) from about a 20% (1 in 5) chance down to less than 1%. Also, it is imperative to know your vitamin D level before getting the infusion (assuming it hasn't been checked in the past couple of years). As the treatment is rarely (if ever) an emergency, i always make sure my patients have vitamin D levels in the mid-optimal range (around 40-50 ng/mL) prior to bisphosphonate therapy (especially Reclast). Even if one's level is 18, 5-6 weeks of replacement can bring it up to > 30 ng/mL."'

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@artscaping @contentandwell has my first infusion yesterday. Hydrated well and took Tylenol before and throughout the day. So far, so good. I felt exhausted and had a slight headache earlier, relieved with the Tylenol. I’ll take care of myself the next two days. I’m still recovering from the side effects of the Alendronate. It really triggered my reflux badly. So I’m back on Pepcid trying to calm it. My nee PCP is fantastic, so that’s a relief! Thank you again for the support and suggestions. I feel really cared for and, as a result, more comfortable getting the infusion

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@joanme

@artscaping @contentandwell has my first infusion yesterday. Hydrated well and took Tylenol before and throughout the day. So far, so good. I felt exhausted and had a slight headache earlier, relieved with the Tylenol. I’ll take care of myself the next two days. I’m still recovering from the side effects of the Alendronate. It really triggered my reflux badly. So I’m back on Pepcid trying to calm it. My nee PCP is fantastic, so that’s a relief! Thank you again for the support and suggestions. I feel really cared for and, as a result, more comfortable getting the infusion

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@joanme I'm glad it went well. I know that will be a strong consideration after I get off of Tymlos so it helps me to feel better about it when I hear of so many who are doing well, as are the few people I know who are also on it.
JK

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@contentandwell

@joanme I'm glad it went well. I know that will be a strong consideration after I get off of Tymlos so it helps me to feel better about it when I hear of so many who are doing well, as are the few people I know who are also on it.
JK

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Day 2 taking the Tylenol as recommended. Still somewhat exhausted, though I was able to go for two brisk walks and out to dinner with a friend I hadn’t seen since pp (pre-pandemic). Now I feel like I could sleep for 12 hours.

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