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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@ejalop

I am taking Fosamax. I have been taking it for 5 months. So far no side effects. I am terrified of Prolia after reading horrible side effects.

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i had 1 prolia shot last november and the side effects were so bad. the day after taking the shot i woke up in severe pain could not close my hands and had diffulty walking and just getting dressed to go back to my dr. i suffered for months with the unending pain 2 compression fratures to date and discovered i had ra. no one in my family had ra ever i am 80 yrs old and until i got the prolia shot had no symptoms whatsoever. after shot i also had swelling of my ankels feet and lower legs, my dr put me on prednisone which helped and had bloodwork done and said i have 2 markers for ra. am now being treated for ra. it seems i got the shot went to bed got up the next day and my entire world was upside down. i can't say for sure the prolia shot did this but it sure is strsnge that before the shot i was fine. i also have osteoprosis and that is what started thids entire thing. these medications are maybe good for some but for othes tsking the wrong one is life changing. believe me i know i get up everyday in pain. when i asked my dr if it wee possible the prolia started something that may have laid dorment in my body for yrs his answer was could b don't really know. these drugs suppress the immune system and just maybe allow something that the immune system was taking care of to flare up i will never know but i do know the day before i got that shot i was fine. it is very depressing to me as i go over as to why i took the shot inmthe first place. my cousin and 2 friends have severe osteroprosis like me nd take no druugs and they are just fine. i thing i was scared into doing this which was wrong snd should hsve been given all the facts. i also blame myself for not checking it out and just saying yes. this i will have to deal with and live with everday for the rest of my life so please be careful it is hard to choose because if you make a mistake in taking the wrong one the consequences can be dire.

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I found this about immune system being affected. I wish it were from a source such as Mayo or Cleveland Clinic.
https://www.drugs.com/medical-answers/prolia-weaken-immune-system-3553497/

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All I know it has a lotttt of bad side effects and it is still new to be sure of other years later effects. Even your eyes can be affected for life to me eyes are too important in life and this is something I will not gamble with. I am glad it is helping others but my luck I feel I will fall in the bad luck section. I will continue to look for more natural ways to do this and work harder on it then I did in the pass not making this a priority now im 68 and I am more aware of what I am doing and been more diligent in taking in what I need to do to absorb my calcium by pill and by food and making sure the calcium is absorbed inside my bones not just the surface of my bones like calcium pills seem to be doing

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@normahorn

I found this about immune system being affected. I wish it were from a source such as Mayo or Cleveland Clinic.
https://www.drugs.com/medical-answers/prolia-weaken-immune-system-3553497/

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thank you so much i read the article and believe me i truly think that is what happened to me. you can not be fine one day and 24 hrs later be so bad the only thing i did was get the shot. drs are prescribing medicines an they really know very little about them they go by what big pharma tells them. as the patient we should have all the facts and then make a decision but that is not what happens again thank you for caring it is so hard to sit everyday and know if i hadn't taken that shot i probably would not be where i am

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@contentandwell

@heyhey I am going through the same as you are right now. I have consulted with two endocrinologists and both would put me on Reclast but I brought up Tymlos because my scores are such that I think I should build bone and then maintain it. They both felt that was a good plan but had hesitated to suggest Tymlos due to the cost and it can be difficult to get approved. At this point, I am thinking I will start Tymlos after the first of the year, assuming Medicare will contribute to the cost. I have been told by others that whether or not Medicare approves it is based on how bad your DEXA scores are.

After taking that for two years I will need to go on something else, either Reclast or something similar. It's a very difficult and scary decision when side-effects are considered. I realize that the horrible side-effects only happen in a very small percentage of people but there seem to be a lot of bothersome side-effects also, and like you, @catharbert I tend to get side-effects frequently, often very rare ones.

@catharbert What side-effects did you have from Tymlos other than fatigue and a general feeling of being unwell? Did the doctor think those side-effects might subside after a while as happens with many drugs?
Thanks for your response.
JK

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@contentandwell, if you are still out there, I'm wondering how Tymlos worked for you.

Well, I hope!

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@normahorn

I found this about immune system being affected. I wish it were from a source such as Mayo or Cleveland Clinic.
https://www.drugs.com/medical-answers/prolia-weaken-immune-system-3553497/

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My doctors have told me that Prolia affects the immune system via Rankly. Evenity affects the immune system as well but my docs didn't mention it (B cell production).

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@windyshores

My doctors have told me that Prolia affects the immune system via Rankly. Evenity affects the immune system as well but my docs didn't mention it (B cell production).

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Ugh typos! Rankl (my computer added the "y"!)

Prolia Drug Class: RANK ligand (RANKL) inhibitor, MC Antibody

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I'm also really struggling with how to navigate my new osteoporosis diagnosis. I'm 66, extremely active (Pilates and power walking), eat a diet rich in calcium, don't smoke or drink alcohol. My T-scores run from 3.1-3-8. I've started on Bone Up and vitamin D. My doctor called and wanted to put me on Fosamax, but after reading about it I understand it doesn't promote new bone growth and has a recommended, limited usage. I'm not certain how to progress. I've not broken a bone, but certainly don't want to! I would like to promote bone growth far as long as possible. A friend suggested Algeacal? Thanks for any insight you all may have!

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@barboc6612

I'm also really struggling with how to navigate my new osteoporosis diagnosis. I'm 66, extremely active (Pilates and power walking), eat a diet rich in calcium, don't smoke or drink alcohol. My T-scores run from 3.1-3-8. I've started on Bone Up and vitamin D. My doctor called and wanted to put me on Fosamax, but after reading about it I understand it doesn't promote new bone growth and has a recommended, limited usage. I'm not certain how to progress. I've not broken a bone, but certainly don't want to! I would like to promote bone growth far as long as possible. A friend suggested Algeacal? Thanks for any insight you all may have!

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@barboc6612 I watched a webinar today and people have different opinions, of course, but Algaecal was described as overrated for a lot of money.

Agree on the meds - if you take them, you first want to consider Forteo (or generic), Tymlos or Evenity to promote bone growth. If you take the Fosamax first, it will interfere with that.

Wishing you well - I'm in much the same boat.

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@babs10

@barboc6612 I watched a webinar today and people have different opinions, of course, but Algaecal was described as overrated for a lot of money.

Agree on the meds - if you take them, you first want to consider Forteo (or generic), Tymlos or Evenity to promote bone growth. If you take the Fosamax first, it will interfere with that.

Wishing you well - I'm in much the same boat.

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I appreciate your insight. I've looked at the drugs you mentioned and they seem to be what I'm looking for. I also looked at the cost....super spendy unless Medicare kicks in. I've got a lot of hoops to go through, but know my general doctor just wants to prescribe Bisphosomates....not a good option for me now. Hoping to get into a specialist. Looks like this will take time. Meanwhile, it's Bone Up and Vitamin D!

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