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.

migizii | @migizii | Oct 4, 2020

In reply to @artscaping "Good evening @migizil, I wanted to introduce you to the Women's Health Network and a current..." + (show)

Hi Chris, thank you for the article which I will read soon. I have battled osteoporosis for almost 20 years and for the first years, I did not succumb to medication but utilized supplements, diet and exercise with continuing bone density losses. During my entire life I was an active person and no intervention I tried gave me any positive motion with my bone density. As we all have to face personal paths, I finally changed my mind and decided to try medications. Multiple medications were attempted and stopped primarily due to my chronic migraines. I have taken Prolia in the past and took a holiday from it, choosing no medication intervention for over a year. Following my drug holiday (and now post menopause age), Reclast was recommended. That was very bad for me, so the decision was to resume Prolia. Fast forward to falling down the stairs, a few stress fractures in my foot and voila Tymlos for the many months until my foot healed. However, I did not tolerate that well, so I am back on the Prolia and doing well. There is a long family history of debilitating osteoporosis resulting in loss of the ability to hold up your spine to the point of having to live on oxygen, which was before the time of these medications. I don’t think any solution is ideal but this is the solution I have chosen and I will be as active as I can, follow a healthy diet, get good sleep, and take helpful supplements also in order to manage my bone strength. Thank you Chris for your kindness and caring! I so appreciate it😊

Chris Trout, Volunteer Mentor | @artscaping | Oct 4, 2020

@migizii Oh my goodness.....what a long and challenging battle you have had. I am feeling quite fortunate that I didn't start this crusade against osteoporosis until I was 77. I agree with you....there does not seem to be a perfect solution for anyone. I do not regret my decision to try medication...I had hoped it would be more conclusive and act as medication should without contradictions to be tolerated. (dream on Chris....dream on.)

May you have a bit of joy tomorrow. It has to come your way.
Chris

fiesty76 | @fiesty76 | Oct 5, 2020

In reply to @migizii "Hi Chris, thank you for the article which I will read soon. I have battled osteoporosis..." + (show)

@migizii, Thanks for sharing your experience with osteoporosis and various treatments. I am so heartened to know that Prolia is working well for you. Guess there aren't any magic formulas and each can cause different reactions.

Like you, I have a family history of this and am tall, small boned and thin. While it is fortunate that more prescribed treatments are now available than were for my mom, no "one remedy fits all". Like you, I was always athletic and still far more limber than others I know in my age group. However, even with exercise and a healthy diet, this progressive worsening of bone density is something to take seriously.

migizii | @migizii | Oct 6, 2020

In reply to @artscaping "@migizii Oh my goodness.....what a long and challenging battle you have had. I am feeling quite..." + (show)

Thank you ❤️

Chris Trout, Volunteer Mentor | @artscaping | Oct 7, 2020

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

@fiesty, Good morning. I just read your reply about Reclast. I think you have me mistaken for someone else. I have only two months and 3 weeks more to finish my 18 months on Tymlos. Then I have some time to rest before choosing the maintenance medication. Once you have built up your bones with Tymlos or Forteo...you have to maintain that effort with a bisphosphonate. It is that group that I am very sensitive to and contract the jaw disease. Thanks for thinking of me though.

And may you be free of suffering fiesty76.
Chris