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.

ZeeGee | @fourof5zs | Oct 1, 2020

@fiesty76
I have taken fosamax, another one I cannot remember the name of orally and my stomach could not handle them so went to Reclast. I have forgotten how many treatments I had.

I have officially osteopenia, but because I have had a compression fracture in my back.. simply on my knees in the kitchen reaching for one of those rarely used pieces of cookware at the back of the cabinet and did the damage.. I am treated as if I have osteoporosis.

I have a bone scan every two years... once I went 4 years because of my upper abdomen problems taking precedent. I was on the break from Reclast at the time.. not sure how long the break was suppose to be. Other than having trouble every time getting the IV in for the infusion I had no problems with it.

I did Prolia I think in either late 2017 or early 2018. Within a couple of hours my stomach hurt.. like a stomach ulcer. I actually called the Mayo Clinic to let my team know and asked what I should do. I had started taking Mylanta on my own and they told me to continue that and to call back if I got worse or no better. I was better after a couple of weeks of that. I am like.. this is an injection how can it hurt my stomach. When I took the Prolia I was told no one had ever had a reaction to it. I read of many who have now, but at the time I had Prolia I had not. There are many trials on such drugs, but the real trial is when it is released into the public. Everyone is different even though our systems work basically the same way.. we react differently.

Last fall I was suppose to meet with an NP and discuss another plan, but that morning my mama .. who lived with us.. had a stroke; I canceled the appointment and I never rescheduled. I was given a printout of a summary chart of my treatments and scan results a few weeks before by an NP at my yearly pelvic exam. There was really no improvement with any of the treatments and no real changes in the scan numbers. I think in my case.. for now at least.. is to just try and eat nutritiously, take my mult-vitamin, vitamin d, and b-12 injection and exercise.

I take generic Pilosec for my stomach and esophagus problems. PPIs are not very good for the bones, but it is a damned if I do and damned if I don't situation. sigh.

ZeeGee

lioness | @lioness | Oct 1, 2020

In reply to @artscaping "Hello @lioness. Good evening. I just noticed that you have reported a reaction/side effect to Reclast...." + (show)

@artscaping Thanks for the reply I'm in enough pain I really don't want to cause anymore It's a bad day the one thing I don't know is my pain from fibro as it's all over include nerves or neuropathy All I know is I'm in pain today My girlfriend was on Forteo almost lost her teeth pain in her jaw , she finally went of all of the bone meds .Thanks for your information Chris

Chris Trout, Volunteer Mentor | @artscaping | Oct 1, 2020

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

Good morning @fiesty76, Tymlos is in the same category as Forteo. Forteo uses synthetic hormones to create the conditions for building bone and Tymlos uses natural hormones. (My words). Bit of a steal either way. I chose Tymlos because it doesn’t have to be refrigerated after you open the pen. You start with 18 months. Fortunately no side effects......My 18 months is up December 25. Then you have 2 years before you need to choose a bone saving maintenance medication.

I am a bit anxious about the lack of choices at this time because of my sensitivity to biosphonates. Because you completed Forteo, you may have to choose another bone saving offering.

May you be safe and protected from inner and outer harm.
Chris

dappy | @dappy | Oct 1, 2020

In reply to @fiesty76 "@dappy, Thanks for your response. I was told that Prolia doesn't require a "vacation from it..." + (show)

Thanks for the information. I’m always looking for anything related to my bone health. So glad you are walking and exercising. I do some but certainly need to do better! Hopefully, I will!