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.

sunnyflower | @sunnyflower | Oct 2, 2020

In reply to @fiesty76 "@sunnyflower, Thanks for osteo specialist recommendation. I didn't know who to consult as a specialist for..." + (show)

Hi fiesty76, well Endocrinologist manage osteoporosis. Orthopaedic docs do take care of bone problems as well, but my understranding is that Endocrinologists manage osteoporosis once a patient gets that. Primary care docs should do DEXA aks bone density scans for women and some men at a certain age or if indicated otherwise. Other doctors such as geriatricians, physiatrists, even GYN can be involved in some way. Warmest regards, Sunnyflower @artscaping @lioness

sunnyflower | @sunnyflower | Oct 2, 2020

In reply to @lioness "@fiesty76 Thanks I am not in as much pain as yesterday A friend said it might..." + (show)

lioness, so glad to hear today is a better day!!!! May that continue to be the case! Warmest wishes, Sunnyflower @fiesty76

sunnyflower | @sunnyflower | Oct 2, 2020

In reply to @lioness "@sunnyflower I'm sorry made mistake I think it was I feel much better today mopped kitchen..." + (show)

Hello lioness, Wow, you sound like you are making up for lost time! I know how it goes. You can always tell when I'm not feeling well by the condition of my condo! I'm super glad to hear your pain is tolerable. Take good care, warm hugs, Sunnyflower

migizii | @migizii | Oct 2, 2020

@migizii in response to fiesty76-I am on Prolia and do not have any issues with it, although others on this forum have expressed some. I do believe there is a limit to how many years you can take this medication, also.....it might be 10 years

lioness | @lioness | Oct 2, 2020

In reply to @sunnyflower "Hello lioness, Wow, you sound like you are making up for lost time! I know how..." + (show)

@sunnyflower I overdue sometimes but feel o.k. tonight thanks that was wicked yesterday Hugs to you for being so kind and thoughtful

Chris Trout, Volunteer Mentor | @artscaping | Oct 2, 2020

In reply to @migizii "@migizii in response to fiesty76-I am on Prolia and do not have any issues with it,..." + (show)

Good evening @migizil, I wanted to introduce you to the Women's Health Network and a current review of Prolia. I think the article indicates that you may be on Prolia for the rest of your life and that patients should wait until absolutely necessary before beginning the treatment. Please let us know your thoughts about this information. I am quite interested in all information about the evidence of effective medical support for osteoporosis.
https://nwhn.org/prolia-safe-treatment-option-osteoporosis/
May you have happiness and the causes of happiness.
Chris

Catcando | @catharbert | Oct 2, 2020

I have polyneuropathy and osteoporosis and I am wondering if anyone who has both these illnesses has taken Prolia and if so what their experiences have been. I am considering it but afraid because I am not in good health and I fear I may have really bad side effects from it. I have tried Evenity and Tymlos both with very uncomfortable side effects.

Catcando | @catharbert | Oct 2, 2020

In reply to @sunnyflower "Hi fiesty76, well Endocrinologist manage osteoporosis. Orthopaedic docs do take care of bone problems as well,..." + (show)

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.

fiesty76 | @fiesty76 | Oct 3, 2020

In reply to @lioness "@fiesty76 Thanks I am not in as much pain as yesterday A friend said it might..." + (show)

@lioness, Glad you are somewhat better today, Linda. Yes, I was very fortunate to not have the negative side effects that so many others reveal....guess it was a case for me of "innocence being bliss". Smiles...p.s. no longer so innocent or accepting of what docs do or fail to do. Don't know about seasonal changes affecting the stomach but a good friend has said for years that fall brings on a blizzard of serious sinus infections...may be due to more humidity??? Hope you improve each day!