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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Profile picture for momcatvw @momcatvw

I’ve been on all bone builders to no avail.
Foreto caused severe leg pain, but it stopped a few days after discontinuing daily injections.Prolia caused the same thing but the severe leg cramps continued for months as it stays in your system longer.
All these years after osteoporosis diagnosis , I ate right, took good supplements, exercised & tried all bone builders Each dexascan shows osteoporosis is worse. Dr is sending me to endocrinologist but they can’t see me for 7 months!

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Have you tried Evenity ? That is one of the bone building meds .

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My doctors won't use Prolia unless every other medicine is somehow not possible. It is hard to get off without losing bone and increasing fracture risk. And it is not a bone builder, meaning it may increase density by affecting bone turnover as an anti-resorptive (osteoclasts) but doesn't build bone (osteoblasts). It has to be followed by Reclast or Fosamax and the timing of that, according to my docs and McCormick's new book "Great Bones," is very very tricky.

Forteo, Tymlos and Evenity are bone-builders and Evenity also has some anti-resorptive qualities.

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Profile picture for lynn59 @lynn59

My endocrinologist said that many people make bone gains with Prolia as well, even though it isn’t technically a bone builder. Have you heard that too?

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@lynn59, yes my dear I have read that about Prolia. Was it especially for men? During my time on Prolia, there was no evidence of bone growth.

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

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Profile picture for oakmary2 @oakmary2

@pennykj Thank you for sharing your experiences so far. Can you tell us about how much a Marodyne LiV platform costs and how long you have been using it? I have decided not to take the Osteoporosis meds and want to do all I can to slow my Osteoporosis

Thanks and good luck with your upcoming doctor visits.

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In reply to Pennykj:

Hi. A while ago you sent me a link to Margaret Martin—thanks so much!— I didn’t reply earlier as I had a virus. Best regards

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Profile picture for kristie2 @kristie2

Have you tried Evenity ? That is one of the bone building meds .

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Thank you for your kind response.
I’m not going to begin anymore meds for osteoporosis
again. I’ve tried every one of them & the side effects weren’t worth it. I walk, am average weight ,researched best supplements to use & yet the scans show worsening bone loss.
I have PN now too . You Tube videos are very interesting with different drs’ & their views of osteoporosis.
Medication can take us in an unhealthy circle.
Hope you get a chance to check some out.
Best of luck.

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Profile picture for momcatvw @momcatvw

Thank you for your kind response.
I’m not going to begin anymore meds for osteoporosis
again. I’ve tried every one of them & the side effects weren’t worth it. I walk, am average weight ,researched best supplements to use & yet the scans show worsening bone loss.
I have PN now too . You Tube videos are very interesting with different drs’ & their views of osteoporosis.
Medication can take us in an unhealthy circle.
Hope you get a chance to check some out.
Best of luck.

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I also have opted not to take bone building drugs. I saw an orthopedic last week for an unrelated condition to osteoporosis and discussed osteoporosis with him. He said not to take the drugs. So that made me feel way more comfortable with my decision than anyone else has.

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Profile picture for cpd54 @cpd54

I also have opted not to take bone building drugs. I saw an orthopedic last week for an unrelated condition to osteoporosis and discussed osteoporosis with him. He said not to take the drugs. So that made me feel way more comfortable with my decision than anyone else has.

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Could you share your DEXA scores? I don't want to take bone drugs but my endo Dr said I should start Prolia.

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I also struggled with this decision. I took Actinel for about two and a half years but I finally stopped because of side effects. I saw a number of different specialists--endocrinologists and rheumatologists. Most wanted to prescribe Forteo, a bone building drug which you self-inject daily for two years. I fought that for several years. I also knew that once I stopped the Forteo (it can only be taken for two years) I would begin to loose the bone that had been built. (That was a big concern for me.) The plan was to then switch to Prolia to maintain bone as best as I could. However, after fracturing several vertebrae (painful), I was warned that things were only going to get worse. I came to a decision that at this point in my life, the benefits would outweigh the possible side-effects. So, I did two years of forteo and yes, I did experience some side effects like low back pain and some knee discomfort. That went away when the treatment was over. I was then put on Prolia which I continue to take and have had no side effects that I'm aware of. Decision making on medication is a personal one. I found so many reasons not to do it. But in the end, I decided I didn't want to continue vertebral fractures, the pain and all the limitations that resulted. The Dr. who performed my kyphoplasty said that one of my vertebrae was like an eggshell. I don't believe my spine was going to support me long term. Weigh each side carefully. Read credible research and information only. Get second and third opinions, but in the end, the decision is yours.

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You can look at the clinical trials of Evenity or Prolia.
I would also read reviews if how people handled the meds.
This does not mean you will react as they did, but it gives you an idea of what you "might" have to face.

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Profile picture for cpd54 @cpd54

I also have opted not to take bone building drugs. I saw an orthopedic last week for an unrelated condition to osteoporosis and discussed osteoporosis with him. He said not to take the drugs. So that made me feel way more comfortable with my decision than anyone else has.

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I took one Evenity injection my family practice physician recommended with severe adverse reactions. Talked with my Ortho (my knees are wearing out!) who told me to get back on my routine of long distance walking along with light weight-bearing exercises plus taking all of the supplements we understand help maintain our bone health. I did add collagen which I had not previously taken. I already eat a healthy diet. I moved from osteoporosis to osteopenia when I maintained high activity levels. I got lazy and it showed in my dexa scores. So…back to my previous routine. Hopefully, I can improve my dexa as I did last time. Wishing you the best!

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