1. < Osteoporosis & Bone Health
Profile picture for victoria93

Can't decide which drug to take.

Posted by victoria93 @victoria93, Dec 6 9:23am

First time on a forum of any kind. Unsure how to do it. I'm 85 and need to go on something for OP. Evenity has been recommended followed by Prolia. I was on Fosamax at 63 which made me feel really sick and then threw up. Switched to Actonel and stayed on it for 7 years, got off at 70 because of reflux problems, then told to stay off it because of fracture risk for long term use. I'd moved so had new doc. Breast cancer at 76, lumpectomy w radiation, stopped HRT. DEXA recently at 85 showed "extreme" OP and current PC wants me on Something! I've refused for years because of side effects. Also during 2023 my husband of 38 years was dying and in hospice for 18 months at home, died in February 2024, so my mind was diverted there. Have developed horrible GERD, taken Protonix w pepcid, trying to taper off, but very hard to do, necessary because it eats yr bones.
After recent massage, I developed sharper pain than usual that hasn't gone away, my PC won't be surprised if I have a compression fracture in my spine. I've never had one so don't understand where it could really be. I've had 2 TIA's in 2023, so don't think Evenity is right, bisphosphonates wd make me sick, afraid of Evista, that leaves the two parathyroid meds Forteo and Tymlos which sound Awful! Any advice on what to pick wd be appreciated. I'm pretty scared!

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

Profile picture for victoria93
victoria93 | @victoria93 | Dec 7 7:28pm
In reply to @osteopatient2026 "@victoria93 Hi again…helping you helps me as well. Because Tymlos “calls upon” your calcium stores…there is..." + (show)
Profile picture for osteopatient2026 @osteopatient2026

@victoria93
Hi again…helping you helps me as well.
Because Tymlos “calls upon” your calcium stores…there is a “load” on your system much in the way when you are tired at the end of a long day and your stores are depleted somewhat. (It is more than just calcium and I don’t know enough as my husband knows more)
Your kidneys and everything else are being called on to keep going which sometimes can make you feel not so good. Again most people do fine. I got reassurance from others here when I started and from the lady from Tymlos who has walked hundreds if not more people through this. Once your system adjusts you should be fine. Again everyone is different but I was worried I would be one that didn’t do so well. So far so good for me almost 4 weeks in.

Jump to this post

@osteopatient2026 Makes good sense of course, so I see now why people are checking their calcium levels as they go along. You are so helpful, I'm very grateful. And I intend to see my PC Wednesday and tell her I want to take Tymlos, NOT Evenity given my TIA history. Thanks again.

REPLY
Profile picture for osteopatient2026
osteopatient2026 | @osteopatient2026 | Dec 7 8:30pm

Keep us updated and how it goes. If you have questions I think based on my limited experience here that there are some good people here willing to try.
One thing I found was a comfort was many of the people here have actually been on these drugs…as opposed to doctors, who may be well intended, but get things wrong for one reason or another. The whole health system, in my opinion, has become terrible…there are some good people though…you just have to look a little harder. You owe it to yourself. ❤️🙏🏻

REPLY
Profile picture for laurabirdsong
laurabirdsong | @laurabirdsong | Dec 8 1:31am

I was also very frightened by my severe OP diagnosis. I’ve been learning a lot, and am working on choosing which med to take. Apparently, starting with anabolics before bisphosphonates is more effective. I read from another commenter somewhere on this Mayo site- that the Tymlos injection device has some dosage control, so one could elect to start with less than a full dose, to ease into it. Also a plus of a daily dose is you can stop if need be, as opposed to a monthly injection of something stronger. I initially had a strong “No thank you” reaction to the idea of daily self administered injections, but…. am reconsidering.
Have you found videos on YouTube by Margaret Martin, and Sarah Mapes? Very informative!
Good luck with your choice. ❤️

REPLY
3 replies
Profile picture for victoria93
victoria93 | @victoria93 | Dec 8 9:43am

You make an interesting point about anabolics before bisphosphonates which I'm allergic to anyway. I've learned a whole lot on this website, so many being so helpful. I'm convinced given my med history that Tymlos is the way to go for me. Thanks for your info.

REPLY
Profile picture for daisylou
daisylou | @daisylou | Dec 8 10:17am
In reply to @victoria93 "@osteopatient2026 I may be too chicken to go w the full dose at first, since I'm..." + (show)
Profile picture for victoria93 @victoria93

@osteopatient2026 I may be too chicken to go w the full dose at first, since I'm so side-effect prone and since others have done the few clicks first then worked up, I think I'm partial to that regimen. Interesting that you cd speak w Tymlos "clinician." How'd you find him? I don't think my FNP is widely acquainted with anything other than Evenity plus Prolia and she probably wdn't want to go "off script" but if the Tymlos people say it's ok, I'd probably give it a try. Thanks again for your help. People here are great.

Jump to this post

@victoria93 my rheumatologist readily agreed to starting with small dose and it was done in his office. I have responded very well to the Tymlos thus far.. Dexa showed good gains

REPLY
3 replies
Profile picture for victoria93
victoria93 | @victoria93 | Dec 8 11:02am
In reply to @daisylou "@victoria93 my rheumatologist readily agreed to starting with small dose and it was done in his..." + (show)
Profile picture for daisylou @daisylou

@victoria93 my rheumatologist readily agreed to starting with small dose and it was done in his office. I have responded very well to the Tymlos thus far.. Dexa showed good gains

Jump to this post

@daisylou Interesting about your rheumatologist and the small initial dose. Helpful comment for me just starting. I think Tymlos works pretty fast, wd be good for me! Thanks.

REPLY
Profile picture for nycmusic
nycmusic | @nycmusic | Dec 8 11:41am
In reply to @laurabirdsong "I was also very frightened by my severe OP diagnosis. I’ve been learning a lot, and..." + (show)
Profile picture for laurabirdsong @laurabirdsong

I was also very frightened by my severe OP diagnosis. I’ve been learning a lot, and am working on choosing which med to take. Apparently, starting with anabolics before bisphosphonates is more effective. I read from another commenter somewhere on this Mayo site- that the Tymlos injection device has some dosage control, so one could elect to start with less than a full dose, to ease into it. Also a plus of a daily dose is you can stop if need be, as opposed to a monthly injection of something stronger. I initially had a strong “No thank you” reaction to the idea of daily self administered injections, but…. am reconsidering.
Have you found videos on YouTube by Margaret Martin, and Sarah Mapes? Very informative!
Good luck with your choice. ❤️

Jump to this post

@laurabirdsong A good nurse or NP can instruct how to do injections…i did them for something else and it wasn’t as bad as I feared… good luck !

REPLY
Profile picture for victoria93
victoria93 | @victoria93 | Dec 8 12:54pm

Thanks, others are saying the same, a revelation to me.

REPLY
Profile picture for osteopatient2026
osteopatient2026 | @osteopatient2026 | Dec 8 1:05pm
In reply to @daisylou "@victoria93 my rheumatologist readily agreed to starting with small dose and it was done in his..." + (show)
Profile picture for daisylou @daisylou

@victoria93 my rheumatologist readily agreed to starting with small dose and it was done in his office. I have responded very well to the Tymlos thus far.. Dexa showed good gains

Jump to this post

@daisylou
What were your baseline scores and what are they now?

REPLY
Profile picture for victoria93
victoria93 | @victoria93 | Dec 8 3:12pm

I can look them up but my PC was wild to get me onto something because they were so high. I've had this disease since the mid 1980's, some bisphosphonates for 7 yrs, stopping in 2011 or so, then breast cancer in 2016 and got off of HRT. Bad reflux made me stop my Actonel, then told I shouldn't stay on it for too long because of fractures. There is a record on the med site of the recent test I can access anytime. Labeled "extreme."

REPLY
View MoreView Less
Please sign in or register to post a reply.