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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

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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@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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@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 want to make this comment if anyone read my post you know i had 1 prolia shot severe reaction and it ruined my life, fynny i am watching tv and guess what a peolia xommercial comes only this one s different. it now lists alot of the side effects including the fractures that occue when you stop. maybe the big lawsui that the company is involved in is making a difference. the commercial is more realistic to what really occurs

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@greta63

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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I admire your decision and the thoughtful approach you took. I am also unsure of what to do, aside from some new exercisebone building regimens and dietary changes. If you don't mind my asking, what were your dexa scores. My vertebrae, the lower ones, were a negative 3.2. Other areas of my body had lower Dexa scores.

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@sedrake51

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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Hi sedrake51, thank you for sharing your experiences. My doctors recommend Evenity but because of the black box warnings I am wary of it. I am trying exercises and diet changes with the hope that I can improve my lower back vertebrae score from negative 3.2 to less without pharmaceuticals. What was your Dexa score? What are the supplements you take? There are so many recommendations I would like to settle on some and your case sounds very promising.

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I have similar scores and experience with my doctor; I am 82 and the black box warnings on Evenity bother me. I am trying the exercise/diet routes first. I look forward to hearing about your experiences and decisions. Thank you for sharing.

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@lashu

Hi sedrake51, thank you for sharing your experiences. My doctors recommend Evenity but because of the black box warnings I am wary of it. I am trying exercises and diet changes with the hope that I can improve my lower back vertebrae score from negative 3.2 to less without pharmaceuticals. What was your Dexa score? What are the supplements you take? There are so many recommendations I would like to settle on some and your case sounds very promising.

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By the way, I have seen positive reviews for Evenity primarily for the spine…not so much for the hip which is my primary concern. There are individuals on this site that do not experience any adverse reactions with Evenity. Guess I was an unlucky one.

Here are my Dexa results using the same screening machine.

Spine -1.6. Hip -2.6. 9/18
Spine -1.1. Hip -1.9. 9/20
Spine -1.2. Hip -2.8. Neck -2.2. Forearm -4.3. 09/22

Had one injection of Evenity January, 2023, after I reviewed my Dexa with my physician. My adverse reactions were awful…my body rebelled. I listed them in a previous post.

I walked long distances. I live in the mountains so it was an intense workout. I became quite complacent and barely walked any distance which I truly believe negatively impacted my dexa scores. It has taken me a while to totally recover from the Evenity. Talked with my physician last week. I have now added collagen peptides to my current supplements of calcium, vitamin C, Zinc, Magnesium, D3, B-complex and K-complex. Most of my supplements are from Garden of Life. I would definitely check with your physician so you can make sure that if you are taking any Rx’s…they will be okay with your supplements and also what the dosage should be for each supplement. Your supplements should also be researched as several of them should not be taken at the same time.

I am going to pay for my own Dexa next month to establish a new baseline to see just how much my physical activity really helped my bone health. Hopefully, the scores will improve. I will post a year from now.

This has been one of the most difficult health challenges I have ever faced. I have researched extensively. Others on this site have suggested excellent books and shared their experiences which have been so helpful. I wish you the best in making a positive decision for yourself!

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@lashu

I admire your decision and the thoughtful approach you took. I am also unsure of what to do, aside from some new exercisebone building regimens and dietary changes. If you don't mind my asking, what were your dexa scores. My vertebrae, the lower ones, were a negative 3.2. Other areas of my body had lower Dexa scores.

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I will check my files and get back with you.

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@lashu

I admire your decision and the thoughtful approach you took. I am also unsure of what to do, aside from some new exercisebone building regimens and dietary changes. If you don't mind my asking, what were your dexa scores. My vertebrae, the lower ones, were a negative 3.2. Other areas of my body had lower Dexa scores.

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My scores in 2022 were
Region: g/cm2 T-Score
Left Femoral Neck: 0.664 -2.7
Left Total Hip: 0.635 -3.0
1/3 Left Radius: 0.592 -3.2
All three showed an improvement from 2020.
In addition to my meds, the doctor wants me on calcium and vitamin D.

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@greta63

My scores in 2022 were
Region: g/cm2 T-Score
Left Femoral Neck: 0.664 -2.7
Left Total Hip: 0.635 -3.0
1/3 Left Radius: 0.592 -3.2
All three showed an improvement from 2020.
In addition to my meds, the doctor wants me on calcium and vitamin D.

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Thank you, greta63. I had not been taking enough vitamins until now, at 82 that's ridiculous! I wonder, what meds are you on, I'm sure you already mentioned that, I'm sorry I do not remember. My spine scores were negative 3.2. I don't remember the others, but they weren't as low as the spine. My last Dexa scan was in 2017 and at that time I was diagnosed with osteopenia. That should have been sufficient warning, but I did not realize it.

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