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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@proliamistake

please read my post on prolia and be very careful about taking it

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Oh i have this is why Im super nervous and cancelled my appointment to use it I am looking at other alternative and reading as many post like yours and others on it. Thank you you have been an eye opener as others on here have for me and in fact my friend is also in the same boat she actually told me her doctor told her stuff like your side effect that my specialist never once mentioned to me and actually said no to some of the questions I confronted her with then I read all this stuff sorta made me upset I was mislead in some of the information she gave me. Thank you again

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@margoduncan

I totally agree even my pharmacist I am reading now some of the reasons I might not been absorbing all my calcium pills into my body it is really frustrating for me to read stuff now how things work they are not clear on how to take some and what can bond your calcium you take out of your body simply with taking it with other meds or food I feel I wasted years of trying to stay out of been osteo to my cost cause dr's and pharmacist do not go into details with you in some very basic things. I dunno if its because im 68 soon and pay more attention but I think if a few key words were told to me even then back years ago I would of known more then I do now ..Like ok my body can't absorb more then a certain amount at one time he should of told me to break up my amounts through the day and this is with calcium pills intake none of these other new drugs. I am at a point where I do not trust any dr views on things or pharmacist for that simple reason. I rely on people who have tried it or read into it in more details. Urg this is so frustrating ...thank you for your reply

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you can nit take just calcium you must take other things with it so your body absords the cslcium. i take vitamin k and mk2 along with vitamin d and magnesium and i might be forgetting something but i know i do not just take calcium but the drs do not tell you becsuse they do not know

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when i got the prolia shot not a word was mentioned about taking calcium and vtiamin d but yet the commercil on tv for prolia says tht but in small print what is the big secret

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@ripley

Your experience sounds terrible. I'm so sorry about the pain you've gone through. My endo Dr minimized size effects, of course. Between my scans in 2019 and 2021, my numbers stayed the same. My next scan is in a couple months and I hope I am still stable and not worse.

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what are you taking and how ddid your dr minimize the side effects

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@proliamistake

what are you taking and how ddid your dr minimize the side effects

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Well right now as it stands I am on the weekly alendronate. I never realized that you had to take this with only water so for a whole year I have been taking this pill with juice or milk so i feel that it was all done for nothing. As for my calcium pill i use to buy the ones with the vitamin in it to help absorb but I never knew you cant take it with just anything else I have been reading up on this now a bit late but certain vitamins and food will stop it from totally been absorbe, plus i was told your body can only absorb so much at a time i thought they meant per day I was just taking one pill a day when now I am reading i should of been taking more like 3 but spread out. My specialist mislead me about prolia she never told me the severe side effects and never mentioned coming off it what could happen never mention while taking it could get spine fractures. This is why I am going to evaluate this all over sit back and find my numbers and see exactly where i stand before making a radical decision. All because I asked my family doctor about these needles from that question I was sent to a specialist out of town so it was a zoom call. I need to really look into this before i make a mistake maybe I am not that bad yet to jump into this. The specialist did not know what i was on how long i took it this made me wonder are you not corresponding with my family dr do you not have all those records on hand. I have a hard time trusting dr now a days cause of stuff like this. I prefer hearing peoples experience then a specialist that just hands out the presc

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@proliamistake

you can nit take just calcium you must take other things with it so your body absords the cslcium. i take vitamin k and mk2 along with vitamin d and magnesium and i might be forgetting something but i know i do not just take calcium but the drs do not tell you becsuse they do not know

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I am so confused about all these vitamins to take my pharmacist said dont take vitamins with calcium cause some vitamins will bind and stop it from been absorb unless it is ok if its the vitamin that with the calcium. I mentioned i was reading about vitamin K2 for calcium she told me no. So now I am totally confused lol. So what I have been doing right now is some places online says do not mix magnesium with calcium yet in other post you can google that is . It is very contradicting. My pharmacist said it is fine to do those two. So been taking my calcium and magnesium. so far and my alendronate once a week. Not doing prolia just too freaked out on it I feel I am not that bad off yet to go there.

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All I can say is that I have been there and recently made the decision originally offered by my GP to go with Fosamax (alendronate) after I went through the Cochrane reviews website and PubMed and read tons of articles on my own (as an academic health professional of a different sort). The alendronate has the longest track record and yes, side effects, but they all do and getting a twice annual shot of something powerful is also a scary proposition. We are in a situation where science just isn't there yet with the best options for Osteoporosis. 50 years from now, if science can continue, they will be raising their hands in horror at what we were told to do now. I have decided to accept that because life happens and we all get old and only so much can be done. I have no idea if I will tolerate Fosamax longer-term but at least the first pill had minimal side effects (weekly dose). Re supplements - so little known also and very confusing evidence. K2 has a good rep on social media but who can trust doctors on Instagram. There is even less science in the supplement industry. I was taking calcium regularly until I had a heart attack and found out I had blocked arteries (calcium collecting there!) so now I only get calcium through food and take magnesium and Vit D. K2 my cardiologist said she wouldn't argue against but really, we JUST DON'T KNOW THINGS. That is the bottom line....Two things that are making me happy are following Dr. Sherri Betz, physiotherapist, and Bones for Life. Exercise programs that help...no strong evidence that they harm or help but they are making me feel good and I hope to avoid those tiny spinal fractures by learning what NOT to do and what to do instead....one good thing about the Bones for Life is that the SUBMAXIMAL effort.....pushing ourselves is something we were taught early on to make advances in physical training..but we can cause repetitive strain injuries or even fractures now that the bones are decrepit...so thinking at a 20% effort level has been liberating and I feel better for those programs. NOT advertising them because they are not cheap or free but another place to go for free is Osteoporosis Canada. They have a good pamphlet you can download called Too Fit to Fracture. Hope this is of help and would like to hear other people's comments.

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@pterodact21

All I can say is that I have been there and recently made the decision originally offered by my GP to go with Fosamax (alendronate) after I went through the Cochrane reviews website and PubMed and read tons of articles on my own (as an academic health professional of a different sort). The alendronate has the longest track record and yes, side effects, but they all do and getting a twice annual shot of something powerful is also a scary proposition. We are in a situation where science just isn't there yet with the best options for Osteoporosis. 50 years from now, if science can continue, they will be raising their hands in horror at what we were told to do now. I have decided to accept that because life happens and we all get old and only so much can be done. I have no idea if I will tolerate Fosamax longer-term but at least the first pill had minimal side effects (weekly dose). Re supplements - so little known also and very confusing evidence. K2 has a good rep on social media but who can trust doctors on Instagram. There is even less science in the supplement industry. I was taking calcium regularly until I had a heart attack and found out I had blocked arteries (calcium collecting there!) so now I only get calcium through food and take magnesium and Vit D. K2 my cardiologist said she wouldn't argue against but really, we JUST DON'T KNOW THINGS. That is the bottom line....Two things that are making me happy are following Dr. Sherri Betz, physiotherapist, and Bones for Life. Exercise programs that help...no strong evidence that they harm or help but they are making me feel good and I hope to avoid those tiny spinal fractures by learning what NOT to do and what to do instead....one good thing about the Bones for Life is that the SUBMAXIMAL effort.....pushing ourselves is something we were taught early on to make advances in physical training..but we can cause repetitive strain injuries or even fractures now that the bones are decrepit...so thinking at a 20% effort level has been liberating and I feel better for those programs. NOT advertising them because they are not cheap or free but another place to go for free is Osteoporosis Canada. They have a good pamphlet you can download called Too Fit to Fracture. Hope this is of help and would like to hear other people's comments.

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Wow I had no idea that calcium can build up in arteries...the things you find out when you listen to people and their experiences. I just found out I have high cholesterol and my dad at my age now had 90 percent blocked arteries so this is another fear I have is getting that. I just realized how calcium gets into your system taking them right when i was taking them for many years the wrong way, not enough, too much and i just know now to spread them apart during the day to get the most absorbed and what not to take with them etc. But now reading your words makes me wonder taking 3 a day now will it just go there in my arteries I hope not. Like you said just don'ts know anything. My doc has no clue keeps saying go read this site and it is vague and contradicts stuff online when you google things one pharmacist will say one thing the other another thing and some just plain do not know lol Oh well I will go see what is on Osteoporosis Canada. Thank you for that info

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@proliamistake

within 48 hrs i was in severe pain could not really walk or open my hands went to my dr he gave me a steroid pac i took the first line and by the next day all the pain was gone so i thought. the minute i was off the steroids the pain came back.it was my whole body a burning deep penetrating pain that i couldn't sleep walking and moving was very painful my whole body just ached. i was put on 20 mg prednisone and that helped somewhat but i was never without pain. as the months went on and the shot was waning the pain got better and then i was told i had ra never had any o =f this before the shot so yes i do believe the shot did alot of damage and i beliee it is still doing it. do not take the prolia shot 6 wks after having the shot i had my first compresion fracture but did not know it until it was pretty much healed. very painful then my 6 mos with prolia was up on may and this past auguat i had another compression frxture. they say that happens whwn you stop the prolia and i only had 1 shot. i am so angry with myself gor not checking it out i trusted my dr and now will suffer with side effects for the rest of my life such as fractures i can only say the fda did not vet this drug properly and drs are giving it out and know nothing about it ir how bad it can be nope this helps

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i kust want to add after taking the prolia shot and being iin so much pain my dr ordered additional bllodwork which showed i had 2 markers for ra no symptoms or physical deformity but i had these markers and was tld i have ra and am being treated for such. i would like to know if only the 2 markers are enough for a diagnsis of raa. also when i asked my dr could the prolia have caused he said possibly so i guess i traded one pain for another. has anyone been diagnosed with ra and if so how because i am 80 yrs old and never had any symptoms of ra befure the prolia imcident also i was diagnosed in 2008 withosteoarthritis not ra right now am very confused

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Anybody have experience with Reclast?

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