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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diwint | @diwint | Oct 26, 2023

I’m struggling, too, with a decision. I started back on Forteo (my 2nd year) in March. I did the first year of it in 2019 then switched to Risedronate. My scores were around the -4 mark. I started having a lot of GERD in the last year so decided to go ahead with my 2nd year of Forteo. However, in July/Aug I started having a lot of issues with bloating, stomach/chest cramping, brittle nails. I have also noticed an increase in hair loss??? My endocrinologist then recommended I try Tymlos. It’s been a process getting things switched over with insurance but it’s finally happened. I just have this real feeling if hesitancy to start it. It’s staring at me every time I open the refrigerator.
Anyone have any words of wisdom or thoughts?
Thank you!

windyshores | @windyshores | Oct 26, 2023

In reply to @diwint "I’m struggling, too, with a decision. I started back on Forteo (my 2nd year) in March...." + (show)

The Tymlos pen has clicks to adjust dose. Full dose is 8 clicks. If you are scared, try starting with two clicks and move up. This helped me and others.

tetris | @tetris | Oct 29, 2023

In reply to @diwint "I’m struggling, too, with a decision. I started back on Forteo (my 2nd year) in March...." + (show)

In addition to the great info on Tymlos sprinkled throughout this forum (and in particular, from @windyshores), maybe consider connecting with a Tymlos clinical educator? (See https://www.tymlos.com or https://www.tymlos.com/resources-support. )
The clinical educator takes time to answer all your questions and concerns, and can walk you through (virtually) your first self-injection. They are very supportive, patient, and understanding, and are there for you. (Forteo, which I'm taking, provides the same service for its patients. I found my the nurse educator immensely helpful.)
I was really apprehensive about doing the self-injections. The first one was the hardest because I really didn't know what to expect with the needle. However, I barely felt it because it's very fine, and sometimes I don't feel it at all. Subsequent self-injections are much easier and quickly become routine.
Best wishes, and remember: you got this! 🙂

Chris, Alumni Mentor | @artscaping | Oct 29, 2023

In reply to @diwint "I’m struggling, too, with a decision. I started back on Forteo (my 2nd year) in March...." + (show)

Good evening @diwint, I see you have been with Connect for about a year. Today you mentioned that GERD has interrupted your osteoporosis medication. I was on Tymlos for two years without any difficulties. So I wish you luck. Let me know if any questions arise. I am here for you.

You may also want to "chat" with @windyshores......she just completed two years of Tymlos. She found the "click" feature to be very helpful.

May you be free of suffering and the causes of suffering.
Chris

ejalop | @ejalop | Oct 30, 2023

In reply to @tetris "In addition to the great info on Tymlos sprinkled throughout this forum (and in particular, from..." + (show)

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.

GiGix2 | @gigix2 | Nov 7, 2023

In reply to @sedrake51 "By the way, I have seen positive reviews for Evenity primarily for the spine…not so much..." + (show)

Keep me posted on your progress.
I’ want to be holistic and your info is helpful to me.

sedrake51 | @sedrake51 | Nov 7, 2023

In reply to @gigix2 "Keep me posted on your progress. I’ want to be holistic and your info is helpful..." + (show)

Will do. 😊

timely | @timely | Nov 8, 2023

In reply to @gigix2 "Keep me posted on your progress. I’ want to be holistic and your info is helpful..." + (show)

Hi GiGix2:

So far, what havevyou been doing holistically?

proliamistake | @proliamistake | Nov 8, 2023

In reply to @ejalop "I am taking Fosamax. I have been taking it for 5 months. So far no side..." + (show)

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.

njhornung | @normahorn | Nov 8, 2023

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/