Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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windyshores | @windyshores | Mar 19, 2022

In reply to @mpeters "I’m taking Reclast, usually once every two years. I have had no side effects and I..." + (show)

Is your Reclast your primary treatment or is it follow-up to maintain gains from another medication?

Becky, Volunteer Mentor | @becsbuddy | Mar 19, 2022

In reply to @windyshores "Is your Reclast your primary treatment or is it follow-up to maintain gains from another medication?" + (show)

@windyshores I started on Reclast last week. First dose. I was taking Fosamax but it really didn’t do anything. Had no problems with the Reclast. I’ll have another DEXA scan this summer. Hope things go well

mpeters | @mpeters | Mar 19, 2022

In reply to @windyshores "Is your Reclast your primary treatment or is it follow-up to maintain gains from another medication?" + (show)

It is the only osteoporosis treatment I have.

judithh580 | @judithh580 | Mar 19, 2022

In reply to @windyshores "Is your Reclast your primary treatment or is it follow-up to maintain gains from another medication?" + (show)

I have also been prescribed Actonel so I am still undecided. Do you know anything about Actonel?

windyshores | @windyshores | Mar 19, 2022

In reply to @judithh580 "I have also been prescribed Actonel so I am still undecided. Do you know anything about..." + (show)

They are both biphosphanates. Actonel is oral, so if you have GERD, you might want Reclast, which is an IV infusion. There are various dose timings for Actonel, often once a week, and Reclast is often once a year. Both have varied timing but just to give you an idea.

alive | @alive | Mar 20, 2022

My doctor wanted me on Prolia, but I didn’t want to commit to taking it for the rest of my life. He then prescribed Fosamax and I was on it for a couple of months until I was hospitalized for an unrelated issue and stopped taking it. I am on so many other meds related to stem cell transplant that I feel like I need to only take meds that are absolutely necessary for me right now. My osteoporosis is mild and I will deal with it later if I need to.

windyshores | @windyshores | Mar 20, 2022

In reply to @judithh580 "I have also been prescribed Actonel so I am still undecided. Do you know anything about..." + (show)

Actonel is an oral bisphosphonate, and often taken weekly, though dose timing can vary. Reclast is an infusion done once a year or with other timing for maintenance. Oral bisphosphonates tend to worsen GERD if you have it.

rmca | @rmca | Mar 20, 2022

I have osteoporosis from Covid. I’m going au naturel...Plenty that has proven successful without Big Pharma and side effects.
.https://medicine.iu.edu/news/2021/10/iu-school-of-medicine-researchers-discover-ties-between-covid19-and-bone-loss
AND
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8746518/
All 177pages....diet and exercise (....weights, resistance, and walking)

betterhealth | @betterhealth | Apr 25, 2022

In reply to @windyshores "Try to get Tymlos because the pens have clicks. Full dose is 8 clicks but you..." + (show)

I tried Forteo 5 years ago, but vertigo was non-stop & had to quit. Next I used Prolia for 3 years, but had to stop after developing MRONJ (jaw bone destruction). Now I am 2 months into using Tymlos. A full dose is '8' clicks, but I started at 1/2 dose, '4' clicks, & so far have only been able to work my way up to '6' clicks. My Doctor tells me '6' clicks is enough to assist bone growth. I take the shot just before bed to sleep off most of the 'tired/dizzy' side effects, but somedays I still have extreme vertigo the next day. Then I alternate '5' clicks one night, '6' clicks next night for a few nights until I feel better. Hoping to keep going on this regimen, along with bone strengthening exercises to improved bone health. Good Luck to everyone on your own individual journey!

windyshores | @windyshores | Apr 25, 2022

In reply to @betterhealth "I tried Forteo 5 years ago, but vertigo was non-stop & had to quit. Next I..." + (show)

I alternated 5 and 6 for awhile and then maybe at 4 or 5 months, was able to alternate 6 and 7. My doc is happy with 6 clicks. I also switched to the morning. I read that Forteo works better in the morning, maybe because that is a more natural time for hormone release-? Anyway I was surprised that when I switched to the morning, my headache and vertigo improved. I have side effects no matter when I take it but unexpectedly, sleeping them off didn't work and I do better with taking the shot around 8:30am- trying to work it back a bit to 7. Everyone is different though!