1. < Osteoporosis & Bone Health
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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

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mpeters | @mpeters | Jun 28, 2022
In reply to @windyshores "Reclast with breaks is what I am hoping for after I finish Tymlos. @mpeters have you..." + (show)
@windyshores

Reclast with breaks is what I am hoping for after I finish Tymlos. @mpeters have you done a bone-growing drug before Reclast?

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I am now on a three year drug holiday from Reclast. A long time ago, when I was first diagnosed with osteoporosis, I had a lot of gastronproblems with my once a week pill. Then at Mayo I was changed to Reclast. I had no side effects. I have all of my teeth with one exception. I am 75. I walk two miles a day and am careful not to fall.

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1 reply
mpeters | @mpeters | Jun 28, 2022
In reply to @callalloo "Do you take nothing in between the Reclast doses? That is, do you take Reclast, skip..." + (show)
@callalloo

Do you take nothing in between the Reclast doses? That is, do you take Reclast, skip 1 - 2 years and then take the next dose with no other osteoporosis drugs in the interim?

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Reclast is my only osteoporosis drug. I have had three infusions, with two to three year drug holidays in between, meaning I take no other osteoporosis drug.

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1 reply
windyshores | @windyshores | Jun 28, 2022

@mpeters that is good information. Thank you! This is my hope for post-Tymlos treatment.

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echolsleslie | @echolsleslie | Jun 28, 2022
In reply to @echolsleslie "I took reclast a year ago and I am due for bone density test next week...." + (show)
@echolsleslie

I took reclast a year ago and I am due for bone density test next week. The first 72 hours were filled with chills, sweating flu like symptoms. I lost 5 lbs in 3 days. The remainder of the year were filled with severe headaches, muscle aches, sore throat, lots of hair shedding luckily not enough for others to notice. It was recommended that I have an infusion once a year. I swear I will never take this infusion again. I will let you know where I was before reclast and new results at end of month. I honestly don't know what's next because I am afraid now of all of these drugs.

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I found out today that the reclast worked as many negative comments that I have written. My doctor wants to do nothing and wait another year since my bone density scan showed no signs of osteoporosis.

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2 replies
callalloo | @callalloo | Jun 28, 2022
In reply to @mpeters "I am now on a three year drug holiday from Reclast. A long time ago, when..." + (show)
@mpeters

I am now on a three year drug holiday from Reclast. A long time ago, when I was first diagnosed with osteoporosis, I had a lot of gastronproblems with my once a week pill. Then at Mayo I was changed to Reclast. I had no side effects. I have all of my teeth with one exception. I am 75. I walk two miles a day and am careful not to fall.

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A 3-year drug break sounds as if you've made so much progress that the doctors thinks you can safely take a lonnnggg vacation. Congrats to you and the doctor both. That's very encouraging for others too.

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1 reply
callalloo | @callalloo | Jun 28, 2022
In reply to @echolsleslie "I found out today that the reclast worked as many negative comments that I have written...." + (show)
@echolsleslie

I found out today that the reclast worked as many negative comments that I have written. My doctor wants to do nothing and wait another year since my bone density scan showed no signs of osteoporosis.

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The 'do nothing and 'no signs of osteoporosis' are good news. Thanks for posting them.

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1 reply
tmtm4 | @tmtm4 | Jun 29, 2022
In reply to @echolsleslie "I found out today that the reclast worked as many negative comments that I have written...." + (show)
@echolsleslie

I found out today that the reclast worked as many negative comments that I have written. My doctor wants to do nothing and wait another year since my bone density scan showed no signs of osteoporosis.

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Reclast can affect whether you can get implants. Some doctors refuse to put implants in if you have taken it in the last 1 or 2 years. If you have taken it longer than that, implants would not work (I've been told.) . I'm not a doctor and have received two completely different plans with two surgeons, one dentist saying I need to get my jaw aligned before I do anything, one dentist saying I need an implant-supported denture with a palet Not one doctor or surgeon agrees on ANYTHING. This will cost a fortune and might fail or I may not be able to get them at all. Very overwhelmed.

I have Osteoporosis, RA, severe scoliosis, severe arthritis throughout my entire spine, 4/5 surgeries on my foot because of a failed bunionectomy resulting in six dislocations, 3 replacements on each surgery ending with a Reverse on both sides. They say I have PTSD, from so many surgeries and I think they are right. I start shaking as soon as I walk into a hospital and really am a mess right before the surgery. Actually I'm a mess now because I worry my back will collapse if I don't get a rod in it. The first neurosurgeon refused to touch three smashed discs because 2 are inside the curve and he thinks my back will "collapse" in the near future if he messes with the one outside. He believes a rod to my mid back is my only option. 2nd opinion-Will fix the disc outside of the curve, but not the ones inside. Nothing about a rod. 3rd opinion to break the tie: He agreed that my back will collapse in the near future as well. but was willing to fix the disc outside the curve.

My upper arch and jaw have collapsed and most of my upper teeth just fall out. That will cost at least $25,000. I am a retired teacher and get a monthly benefit paid by PSRS instead of SS in MO. Since I do not have enough work credits in SS, they will not even look at the five areas I qualify in. PSRS does not have ANY disability after you retire. I am screwed, scared, frustrated, and cannot make a decision on my mouth because anxiety is through the roof. No good solutions.

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1 reply
mpeters | @mpeters | Jun 29, 2022
In reply to @callalloo "A 3-year drug break sounds as if you've made so much progress that the doctors thinks..." + (show)
@callalloo

A 3-year drug break sounds as if you've made so much progress that the doctors thinks you can safely take a lonnnggg vacation. Congrats to you and the doctor both. That's very encouraging for others too.

Jump to this post

Thank you. I also credit my two mile walk every day, plus calcium pills and eating calcium rich foods such as salmon and low sodium cottage cheese.

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echolsleslie | @echolsleslie | Jun 30, 2022
In reply to @callalloo "The 'do nothing and 'no signs of osteoporosis' are good news. Thanks for posting them." + (show)
@callalloo

The 'do nothing and 'no signs of osteoporosis' are good news. Thanks for posting them.

Jump to this post

Thank you. I am just so hesitant to do nothing but as some point and time I have to follow the doctors orders 🤔

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1 reply
bunky44 | @bunky44 | Jun 30, 2022
In reply to @tmtm4 "Reclast can affect whether you can get implants. Some doctors refuse to put implants in if..." + (show)
@tmtm4

Reclast can affect whether you can get implants. Some doctors refuse to put implants in if you have taken it in the last 1 or 2 years. If you have taken it longer than that, implants would not work (I've been told.) . I'm not a doctor and have received two completely different plans with two surgeons, one dentist saying I need to get my jaw aligned before I do anything, one dentist saying I need an implant-supported denture with a palet Not one doctor or surgeon agrees on ANYTHING. This will cost a fortune and might fail or I may not be able to get them at all. Very overwhelmed.

I have Osteoporosis, RA, severe scoliosis, severe arthritis throughout my entire spine, 4/5 surgeries on my foot because of a failed bunionectomy resulting in six dislocations, 3 replacements on each surgery ending with a Reverse on both sides. They say I have PTSD, from so many surgeries and I think they are right. I start shaking as soon as I walk into a hospital and really am a mess right before the surgery. Actually I'm a mess now because I worry my back will collapse if I don't get a rod in it. The first neurosurgeon refused to touch three smashed discs because 2 are inside the curve and he thinks my back will "collapse" in the near future if he messes with the one outside. He believes a rod to my mid back is my only option. 2nd opinion-Will fix the disc outside of the curve, but not the ones inside. Nothing about a rod. 3rd opinion to break the tie: He agreed that my back will collapse in the near future as well. but was willing to fix the disc outside the curve.

My upper arch and jaw have collapsed and most of my upper teeth just fall out. That will cost at least $25,000. I am a retired teacher and get a monthly benefit paid by PSRS instead of SS in MO. Since I do not have enough work credits in SS, they will not even look at the five areas I qualify in. PSRS does not have ANY disability after you retire. I am screwed, scared, frustrated, and cannot make a decision on my mouth because anxiety is through the roof. No good solutions.

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Dear tmtm4~
I have no answers for you..but wanted to send you a 'hug'.
I haven't yet walked the path you've been on..and I'm so sorry you've suffered so.
I am just beginning my journey with these issues...three compression frxs. and severe osteoporosis as well as osteoarthritis. I'm scared of what's to follow when I do see an Orthopedic surgeon...and get an MRI of my spine.
My nightmare will become reality then....
I'm, on the outside extremely healthy for a 77yr. old women...but this bone thing is beyond me as to how I got this bad as well as what to do first. I'm afraid of surgery, injections, as well as the current medications that are out there..all causing such dramatic and lasting issues to then deal with. Lordy....don't know what to do. I guess you feel the same way..like we stepped on a land mine and now have to figure out a way to step off without blowing up!
I hope the best for you on your journey....peace of mind and resolve, so that your body can heal with what your decisions are to be.
Bunky....

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