Tymlos after prolia

[Maverick2015]

I have been on prolia 4ish years. I had a 4 to 5 month break due to Dr leaving and then insurance issues. No one told me to not have a break. I had 6 compression Fractures. Because of being at such a high risk for more Fractures she put me on tymlos. From what I've read and from others it has good results but my prolia runs out in 3 months and she said I won't be taking it until after tymlos. Everything I have listened to or read says tymlos first then prolia and a bisphosphonate after prolia. Has anyone done prolia for at least 3 years then to tymlos? I suppose the only time someone would do it that way is if prolia wasn't working. I'm trying to find another dr but long wait times which I don't have time to wait. Thanks

[RubymyT]

I'm sorry but your doctor is a fkkin idiot , but believe me I am in a fight with docs to get off Prolia. I can barely walk since taking it , it causes bone and leg pain, also increases cholesteral. Had ultrasound from midriff to my toes. Holy , I now have hardening of the arteries in my legs and have to take heavy duty cholestrol meds, exercises and I'm gettin a sheet load of natural remedies.

Ok I'm still fighting with my docs

I've done all the reasearc, I'll post you the links if you want. If getting off Prolia ,from what I've found if you don't want an injectible the best is Alendronate. It's a pain in the ass , think its daily 1/2 hr, before any meals or drugs in the morning. Here is the link its really scientific , so you know its not garbage. A lot you may not understand , but you'll get the Gist. There is a section that says about the best most likely to have the least bad withdrawals. Most doctors have no idea. If you want to know anything about meds talk to a pharmacist. Doctors have one year of medication classes in med school. I was told that by a specialist

Summary of Recommendations Regarding the Discontinuation of Denosumab

If long-term denosumab is stopped, patients should be transitioned to a bisphosphonate, with either

  a single-dose of zoledronic acid 6 months from the last denosumab dose, or

a short course (at least 1 year) of oral alendronate

Monitor serum CTX and BMD and redose if CTX is persistently elevated or if BMD shows a significant decline

THAt first one zoledronic acid is an injectible. I would rather have a pill , if I have a bad reaction , at least I can stop and change to something else. It has worse side effects too.

Ok heres the link , the graph in the beige pink area shows what reaction each med had when changing from Prolia I think it would be the same for Reclast.

The rest is pretty scientific , don't let it scare you

ncbi.nlm.nih.gov/pmc/articl...

My back is full of spinal fractures , I go for spinal injections and epidurals every three months and my back is fused. It shows they had one lady that had a broken arm after changing meds , but hell I'll take a broken arm over spinal fractures

Good luck , hope it helps

[AzKK2019]

Your story sounds a lot like mine. I too started on Prolia, wasn't told to not stop, had insurance issues and had seven fractures. I went on Tymlos for two years with good results . They wanted me to go back on Prolia........I refused. I take supplements and my last Dexa scan had good results. So I have chosen to keep a close eye on it . I'm in no way suggesting you do the same but want you and others know that there are options and this forum is a great place to learn of them.

[Maverick2015 in reply to AzKK2019]

Thank you thank you thank you!!! I feel like I am struggling with this on my own. I have been told by so many to stop meds but after 6 fractures I and -3.7 scores I don't feel like that is an option. I definitely would look into it if I was a lot better. I am so glad you got good results . How long were you on prolia before the tymlos.? I have asked to be referred to a different dr. I am desperately searching for a new dr that will take me and know what they are doing. I am only 56 and I need a plan to get my life back. I was extremely athletic and now I am just tryin g to build up walking miles. Hopefully, the pain will go away soon. I am not even able to work. This has really got to me mentally and just your positive comment made me feel so much better.

[josephinius1 in reply to AzKK2019]

Would you be willing to be more explicit about what "good results" means? Better t-scores? Can you share your scores? I'm just trying to get a read on what kinds of improvements people are seeing with what interventions. It's hard to find specifics online, mostly I see things like "50% reduction in fractures," but then someone else will say/claim all that means is 2 people out of 100 fractured instead of 3, and for all we know, that's because they were more careful...I know I'm more careful after several fractures and much more limited mobility, well, limits me. 😉

[Screwed]

well none of this is good news. I too desperately want off Prolia. I was put on that drug first. I have only had 3 injections.?this last one in Nov of 2023 is where I noticed more side effects. I also had a purple bruising/bleeding rash that comes and goes since May of 2023.

My dermatologist recommended I go off Prolia. I’m sure the rheumatologist will try to persuade me not to. However I am 62 and don’t want these side effects and more for the rest off my life.

I’m also noticing my active life is declining. Apparently I have severe osteoporosis.

I’ve read the side effects of alendronrate and don’t want them. I agree a pill is easier to stop taking rather than the zolendron injection.

These are not easy decisions. I have scheduled myself with an endocrinologist but that’s not til March.

Ughh ladies

[Kitchenbuddy]

Best of luck. I have not used any bone building medications. I try to get my calcium with food.and Viactiv calcium chews. I know this may not be enough, but the side effects from taking the medications for osteoporosis scare me.