1. < Osteoporosis & Bone Health

Reclast Appointment Cancelled Morning of Appointment!

Posted by fiesty76 @fiesty76, Sep 30, 2020

Very upsetting early phone call this morning...at 7:15 am from my clinic telling me that I was no longer "eligible for Reclast" and not to come in for the 9am appt. I was floored not only because the cancellation came so early in the morning but also because it had been a struggle with delays to get the appt. scheduled in the first place.

Didn't ask why the day of the appt I was just getting the call but had to wait until office opened at 8am to find out from P.A. assistant that because I'd completed my 5th yr on Reclast, I would have to go off it for a full year. Hadn't realized I'd been on it that long or that there was a definite cut-off period.

Asked what to do for bone density in the interim? (have been on many other osteo meds) and was told that request for Prolia would be sent for ins/Medicare approval before appt could be set. I range between stage 2 and 3 chronic kidney disease (ckd) am, prediabetic and diagnosed with chronic bronchitis. Had read some time ago about negative side effects of Prolia and now unsure about starting it without information from others. Need to do some online reading about it but still in shock and disappointed about the sudden cancelled appt.

Have others here had experience with Prolia and if so, how did you do or are you doing on it? The assistant said that while both annual Dexa and bloodwork would still be required, there was no cut off time once on Prolia and that the infusion is given every 6 months.

I'm wondering if I might ask to go back on one of the other meds prescribed in the past if Prolia sounds too risky. Hoping for some member experiences please?

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judiruss | @judiruss | Oct 21, 2020
In reply to @fiesty76 "@artscaping, Not @lioness, but regret your painful side effects from taking Reclast, Chris. I had no..." + (show)
@fiesty76

@artscaping, Not @lioness, but regret your painful side effects from taking Reclast, Chris. I had no side effects from Forteo but Tymlos is another med I'd not known about and need to research. Have been to orthopedist for bone fractures but he was a surgeon...would that be the specialist to visit as a specialist for bone meds or is there another?

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Hello, I would like to know about your experience with Forteo. How long have you been Forteo and side effects?

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1 reply
fiesty76 | @fiesty76 | Oct 21, 2020

Hi, Judiruss, I was on Forteo for the two years allowed prescription. It went exceedingly well for me with no adverse side effects. When that was stopped, I "graduated" to Reclast which is a once/year infusion. Having recently completed my fifth year of Reclast, I was told I must either take a one year "vacation" from it or choose another option. Before taking Forteo, I took Fosomax and again with it, I had no side effects. Only recently have I become aware that some patients have experienced unpleasant and seriously adverse side effects taking prescribed osteo drugs. Has your doctor recommended Forteo for you?

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2 replies
judiruss | @judiruss | Oct 21, 2020
In reply to @fiesty76 "Hi, Judiruss, I was on Forteo for the two years allowed prescription. It went exceedingly well..." + (show)
@fiesty76

Hi, Judiruss, I was on Forteo for the two years allowed prescription. It went exceedingly well for me with no adverse side effects. When that was stopped, I "graduated" to Reclast which is a once/year infusion. Having recently completed my fifth year of Reclast, I was told I must either take a one year "vacation" from it or choose another option. Before taking Forteo, I took Fosomax and again with it, I had no side effects. Only recently have I become aware that some patients have experienced unpleasant and seriously adverse side effects taking prescribed osteo drugs. Has your doctor recommended Forteo for you?

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Thanks for your response My doctor is checking with my insurance and hoping to start Forteo as soon as approved. I too took Fosamax for five years but with no success. I did not have any side effects but when I started having femur pain It was recommended that I stop. I’ve refused recommendations of Prolia for years, but spinal compression fractures are convincing me to do something. I am extremely worried about the side effects from Forteo, but Hearing that you had no side effects helps So thanks again for sharing.

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fiesty76 | @fiesty76 | Oct 22, 2020

@judiruss, If you decide to go with Reclast, I hope your experience will go as well as mine. Until the last Dexa scan, my scores improved slightly each yr. The last one showed no improvement but also no loss. The P.A. told me the goal for me was now maintenance and preventing further loss. Like you, I am saying No to Prolia based on all I've read. Hope you'll let us know how it goes for you.

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sunnyflower | @sunnyflower | Oct 27, 2020
In reply to @judiruss "Thanks for your response My doctor is checking with my insurance and hoping to start Forteo..." + (show)
@judiruss

Thanks for your response My doctor is checking with my insurance and hoping to start Forteo as soon as approved. I too took Fosamax for five years but with no success. I did not have any side effects but when I started having femur pain It was recommended that I stop. I’ve refused recommendations of Prolia for years, but spinal compression fractures are convincing me to do something. I am extremely worried about the side effects from Forteo, but Hearing that you had no side effects helps So thanks again for sharing.

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Dear judiruss, I am Sunnyflower. Could you please tell me whar spinal compression fractures feel like? I know they can be hard to see on film. Were yours spontaneous or from an injury? I am very afraid of that happening to me. I have "severe" osteoporosis and take daily steroids. I am steroid dependent so can't get off of them. Ug. Thank you very much and I wish you all the best. Warmest regards, Sunnyflower

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gretchen1018 | @gretchen1018 | Oct 29, 2020
In reply to @catharbert "Rheumatologists also treat osteoporosis. I had my first appointment with a rheumatologist today. Probably very similar..." + (show)
@catharbert

Rheumatologists also treat osteoporosis. I had my first appointment with a rheumatologist today. Probably very similar approach to treatment as the endocrinologist I have been seeing. She is a woman and easier to talk to. Same drugs. No mention of non pharmaceutical options.

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Did the endo order any tests that the rheumatologist did not. Like a urine test?

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Catcando | @catharbert | Oct 29, 2020

The endocrinologist ordered several blood tests but no urinalysis. the rheumatologist got copies of the earlier blood test results but ordered no blood or urine tests. So far I see little difference if any between the two doctors except that the rheumatologist is a woman and easier to talk to and explained more things than the male endocrinologist.

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1 reply
ldawsonat105 | @ldawsonat105 | Jun 4, 2021
In reply to @artscaping "Wow....@fiesty76, I am in the same canoe....I think. Need to get somewhere....but it seems all of..." + (show)
@artscaping

Wow....@fiesty76, I am in the same canoe....I think. Need to get somewhere....but it seems all of the choices have holes in the structure. I did some more reading today. Here were the negatives for me.......bone, joint, and tissue pain. I deal with that every day trying to control neuropathy. You can take it for 10 years.........but the side effects don't always go away. DEXA scan scores didn't improve but then I remember that Prolia doesn't form new bone...it just keeps what you have all in one piece (hopefully). And when the most significant rise in fractures seemed to happen pretty quickly.....I am somewhat alarmed. The research is set up correctly I think and the incidences are recorded and calculated accurately as far as I can see.

Where is our shining star? I check in November 13 to discuss options. Pour the info my way if you see anything significant. Watching calcium also isn't one of my favorite things to do. How many grilled cheese sandwiches can I eat to take the place of the supplements which drive me crazy.

Thanks for responding....I'll check back in after the big decision meeting.
May you be free of suffering and the causes o suffering.
Chris

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My shining star is Oteo-strong! A program that increases the bone density . No medication but a set of machine/excerises to increase strength in all of your bones. This program started in 2012 by a doctor for his mother and is in all major cities and other countries. Check it out the info and videos on line and see if it for you. Laverne

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1 reply
Jefesitachica | @npolanco | Jun 5, 2021
In reply to @ldawsonat105 "My shining star is Oteo-strong! A program that increases the bone density . No medication but..." + (show)
@ldawsonat105

My shining star is Oteo-strong! A program that increases the bone density . No medication but a set of machine/excerises to increase strength in all of your bones. This program started in 2012 by a doctor for his mother and is in all major cities and other countries. Check it out the info and videos on line and see if it for you. Laverne

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Thank you for your post . I value information on Osteoporosis . I checked Osteo - Strong and think I should continue looking in to it using @sueinmnn’s cardinal rules.

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ldawsonat105 | @ldawsonat105 | Jun 5, 2021

I completed my first appointment this week and it went well. I didn't know if I would have enough energy or strength for all the requirements but I got it done and now have a "base line" to work with to see if I can improve it . Will let you know how it goes.

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