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?

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

hlh | @hlh | Jun 5, 2021

The good thing about Reclast is that it has a break for two to three years and you can go back to it after the break if you want to. I had Reclast for 3 years and followed with a break of 3 years. It did not retreat. Good luck!

jmanj | @jmanj | Jun 24, 2021

In reply to @judiruss "Hello, I would like to know about your experience with Forteo. How long have you been..." + (show)

Just seeing your question. Just finished two years of Forteo with 12% increase in Spine and 5% in Hip density. Had zero ill effects during the whole time, and administering the shots was easy. Headed out to do a Reclast infusion next.

Catcando | @catharbert | Aug 9, 2021

I AM 77. LAST YEAR I DISCOVERED THAT I HAVE SEVERE OSTEOPOROSIS. Somehow I managed to ignore the DEXA scan reports from several years back that indicated that I had osteoporosis already. My mind was somewhere else. Fast forward to 2020 I started learning a lot about this disease. I learned that any doctor can diagnose it and treat it but endocrinologists and rheumatologists are specialists who have more training and experience with how this disease works and how to treat it. I've been to both specialists and they both recommended Evenity. I don't like taking medicines and I frequently have unpleasant side effects. I am already on pain meds for neuropathy and they make me sleepy and dizzy sometimes. But when I found out how bad my osteooporosis is I wanted the best treatment that would have the fastest results and that is Evenity. Any side effects have been very mild. I took it for the prescribed 12 months and now I have transitioned to Prolia. and had no side effects with my first injection. I'm happy that with Prolia there are just 2 injections per year but it is a long term treatment - for the rest of my life. I have been living on pins and needles with this disease and I am grateful for these medicines and so far I have seen some good results - the proof is in the pudding.

I would caution people to keep in mind that this blog is no substitute for the advise of a qualified physician. Please consult a doctor before deciding on a course of treatment particularly if you are considering "alternative medicine" or treating yourself with supplements and over the counter medicines. You only have one life and you owe it to yourself to get the best advice from medical professionals.

bustrbrwn22 | @bustrbrwn22 | Aug 9, 2021

In reply to @catharbert "I AM 77. LAST YEAR I DISCOVERED THAT I HAVE SEVERE OSTEOPOROSIS. Somehow I managed to..." + (show)

I am so happy for you!

Becky, Volunteer Mentor | @becsbuddy | Aug 10, 2021

In reply to @catharbert "I AM 77. LAST YEAR I DISCOVERED THAT I HAVE SEVERE OSTEOPOROSIS. Somehow I managed to..." + (show)

@catharbert You are sounding so upbeat! That is so good to hear. Ive been following the discussions on osteoporosis because my DEXA scan also came back as not good. Your reports on the drugs are nice to hear.
I also liked your statement advising people that this blog is no substitute for the advice of a qualified MD. That is so spot on! I hope everyone sees and reads your message! Thank you

zaa | @zaa | Aug 13, 2021

In reply to @jmanj "Just seeing your question. Just finished two years of Forteo with 12% increase in Spine and..." + (show)

Was scheduled for reclast but am postponing it until I get it researched. Do you have any updates on your experience from June? Great to hear that you’re increasing on your spine and hip.

jmanj | @jmanj | Aug 13, 2021

In reply to @zaa "Was scheduled for reclast but am postponing it until I get it researched. Do you have..." + (show)

I’ve had zero negative impacts from the Reclast infusion, so far as I can tell. Feeling fine … just hope it is doing the job too help retain the increases I had with the Forteo!

lkel | @lkel | Sep 15, 2021

In reply to @catharbert "The endocrinologist ordered several blood tests but no urinalysis. the rheumatologist got copies of the earlier..." + (show)

My endocrinologist ordered a 24 hour urine test. I can't say the exact purpose but he prescribed Forteo. Also IgG deficiency showed up. Immunology is working with the IgG.

Becky, Volunteer Mentor | @becsbuddy | Sep 15, 2021

In reply to @lkel "My endocrinologist ordered a 24 hour urine test. I can't say the exact purpose but he..." + (show)

@lkel I’m a little confused 🤔. I see you’ve been with Connect and this is your first time posting. Welcome.
Can you tell me why the doctor ordered the 24-hour urine test. What symptoms did you have when you made the appointment to see him? If you don’t mind, can you give us a little more history and information?

Chris Trout, Volunteer Mentor | @artscaping | Sep 15, 2021

In reply to @becsbuddy "@lkel I’m a little confused 🤔. I see you’ve been with Connect and this is your..." + (show)

Good afternoon @lkel and @becsbuddy.. I just read this post and recalled that I also had to produce a 24-hour urine test to find out if I was releasing too much calcium in my urine. I think the goal is to keep the calcium in the body to help produce the bone which Forteo initiates.

Chris