Treating Osteoporosis: What works for you?
Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂
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@artscaping - I stopped after just one dose of Prolia in January 2021 because Inread so many horror stories, and my doctor didn’t put me on any relay drug. She said I cannot take the bisphosphonates (Actonel, Didrocal, etc.) because I already had been on the for several years. I wonder if it would be safe for me to go on Evenity after stopping the Prolia over a year ago …? 🤔 My doctor seems very annoyed that I refused to continue with Prolia and doesn’t seem too communicative on this subject. 🤷🏼♀️
My dear @rashida, I will admit to you that I am considering stopping Prolia after 1 year which will be up in May. I am having some of the same reactions I had with Boniva and other bisphosphonates even though Prolia is not a bisphosphonate. Both my PCP and I are keeping an eye out for new information. She is researching Evista and I am researching Evenity. I read just last week that Evenity can now be taken for two years. Remember that Evenity does both jobs.......creates new bone and then protects it from being destroyed. If that is true, and we are just guessing, then you could do two years of Evenity ........then another what you call relay drug......then back to Evenity .......etc. etc.
I will see if there is anything more in the literature. If you find something mentioned about that possibility with Evenity, please post me here on Connect. I get so discouraged with the limited options available to those of us who are extremely sensitive to so many of the osteoporosis medications.
Other than that......get ready to enjoy springtime. Let's stay in touch.
May you have peace and contentment.
Chris
Will do, @artscaping!
I had osteoporosis for 14 years without medication because I reacted to biphosphonates and had heart issues with Forteo (afib). After fracturing my spine in a few places, I have gone on Tymlos which has side effects that improve over time (I started with low dose) and is tolerable. I want to do Evenity after Tymlos. I am curious why you are considering Evenity rather than Tymlos or Forteo...The latter do not suppress bone turnover, Evenity does, though to a lesser degree than Prolia and biphosphonates.
@rashida, @windyshores
This is just an FYI to both of you that I recently completed two years of Tymlos because of a pretty severe reaction to Boniva. I was "forced" to then transfer to Prolia because all the other "protectors" are bisphosphonates.
May we all be safe, protected, and free from inner and outer harm.
Chris
I am afraid of exactly that. Prolia is the one med my doctor doesn't want me on but he is also leery of Reclast. I am wondering about following Tymlos with Evenity. Forteo can be taken for more than two years so also wondering if Tymlos will be extended. My doc also mentioned doing 1/4 dose Reclast after Tymlos with meds and a lot of water and slow infusion, and then monitor to see when and for how long I can go between infusions.
Just had my 8th Prolia injection. Most of the big jump in improvement is at the beginning but I continue to show improvement based on the dexa scan this week.
Not sure if you posted this elsewhere, but I would be interested in understanding why your doc will avoid Prolia. Was it due to the possibility of fractures or not being able to stop the drug? Appreciate any insight. Thanks
So I have been on Evenity for 5 months. My alkaline phosphatatase is very elevated. The Dr said it will go down after I am done. Otherwise I have had just a sore arm not often enough to complain about it
Thank you for your feedback regarding your personal experience with Tymlos. I also started slowly with Tymlos a month ago. Side effects were manageable until I recently got to '7' clicks. I am taking injection at bed time to sleep off vertigo side effects. Drinking 2 qts water every day, eating every 2-3 hrs to keep blood sugar up. But next day after '7' clicks I was still experiencing intense exhaustion/brain fog all day, into the evening. Now, back to '6' clicks again & feeling much better. My Dr. suggests alternating '6' clicks with '7' clicks every other night to see if side effects get slowly better. Staying hopeful.