Support For Those Quitting Prolia

@formisc, I wondered. With your T score many endocrinologists would not have prescribed osteo meds for you. Cheers to your escape.

@formisc You provided a fine example of careful planning and usage of bone markers for monitoring progress. Curiously, is your planned reducing dose to once every 2 weeks for 6 mo then once monthly thereafter for the second year a well studied regimen? Generic fosamax -alendronate comes in with many dose strength as you probably know. They could provide a way for titrating dose downward in a gradual manner.

Thank you for sharing your ongoing prolia cessation experience. Best wishes.

Thanks, gently. Unfortunately, the PCP I saw for my osteoporosis was keen to prescribe the meds

Thanks, mayblin.
No, I am doing this all on my own without any advice and knowledge other than what I have researched/read. Most studies recommend a follow-on period of between 1 to 2 years after Prolia although I recall I saw one article that mentioned a minimum of just 6 months but I can't find it again. With my low CTX scores, I could conceivably stop my Alendronate after 1 year but I prefer to be more conservative and ease off more gradually to reduce any shock to the system. I did come across several studies that mentioned that a half dose or fortnightly dose was effective in suppressing bone resorption but none referencing such use in withdrawal from Prolia. As for smaller dosages of Alendronate, I understand that these are only available for the brand-name Fosamax pills but I have not been able to find them in any pharmacy (and they would likely need a separate prescription) hence I have to go the fortnightly/monthly route

You are amazing at planning and executing each step all by yourself! Soon your hard work will be paid off. Thank you for the links that you provided at the beginning of this thread - they could be very handy for someone in need.

I probably got it wrong- I thought generic has different strength 5, 10, 35, and 40mg, maybe it's the other way around. The next lower strength 40mg isnt too far from what you are planning to do - so your plan of reducing dose is sound regardless. And, you have CTX to ensure the effectiveness. Best of luck, keep us posted with your progress!

Yes, the recommended Fosamax dosage for treating osteoporosis is 70mg weekly or 10mg daily. The recommended dosage for prevention of osteoporosis is 35mg weekly or 5mg daily. And 40mg daily is recommended for the treatment of Paget's disease

Hello,
After almost 2 years on Prolia, I moved to a new state and new endocrinologist. She took me off Prolia because she felt I was too young (67) to be on it for the rest of my life. I agreed to get a bone density and revisit at the next appointment. In the meantime, (3 months) I was diagnosed with two compression fractures in my spine. Not sure where to go from here. Note to self and anyone reading. DO NOT go off Prolia without a plan going forward.

@schallgal, so sorry to hear about your compression fractures. Hope you are well now.
I presume you stopped Prolia cold turkey without any follow-on med? That's usually not advisable. Also, did you do any bone turnover marker (BTM) blood tests in particular, CTX? That could give some warning about any possible rebound effect from stopping Prolia
The usual advice I have read from public papers is to use Reclast as a follow-on med after Prolia when you have taken 3(4?) or more shots. In my case, I stopped Prolia after 3 shots and I wasn't keen on doing a 1yr dose of Reclast so I opted to try weekly Alendronate instead and it seems to be working to suppress the rebound

I recently went for my fourth Pro shot after getting a bone density which showed a 9% improvement in my spine in two years of Prolia. I was told that after two more years and continued improvement with no fractures they will switch me to Reclast infusion. No one should take you off Prolia without having another bone density drug to replace it, I’m really shocked that your Endocrinologist would just take you off it. I would advise getting a new doctor.

I share your relief to learn that your most recent CTX test number has presumably increased and is now measurable.

And I am heartened to also learn you have a well-designed plan to reduce the alendronate dosage perhaps with the aim, in part, of increasing your low CTX number whilst avoiding Prolia related 'rebound.'

I hated thinking with such a low CTX number, new bone might be forming on top of a less than ideal foundation of old bone because it is not undergoing osteoclastic grooming/preparation.

Are you monitoring your iPTH level for a particular reason? And could that reason be connected to the low CTX number?

Also you implied in an earlier post that you stopped Prolia because you had problems with it. What sort of problems did you experience?

I need to start thinking about weaning myself from post-Prolia alendronate but should perhaps wait until I have another CTX test in December (had no baseline.)By then, it will have been 2 years since my last Prolia injection, well past any 18 month rebound window.

My one and only CTX score was 313, taken last May after one year on alendronate which was started when my 3rd Prolia injection was due.

Would prefer for the CTX number to go down a bit more but it does not appear worrisomely high standing alone. Just wish I understood better what it means in relation to my P1NP result and to somehow knowing that the resulting bone formation is producing something strong, not just dense. I am very keen about not confusing bone density and bone strength.

Perhaps I will copy your alendronate reduction strategy .....if so, do I have your permission to call it the 'formisc step-down approach?'