Support For Those Quitting Prolia

@lulub98 Fosamax and Reclast are both bisphosphonates.

The medications for osteoporosis are either anti-resorptives (which decrease turnover) or anabolics (which grow new bone). Fosamax and Reclast are anti-resorptives. Tymlos and Forteo anabolics. Evenity is both and very potent for growing bone.

Do you have an endocrinologist? Many primary care doctors will start with Fosamax because insurance wants us to do that (or Prolia) first. But these will interfere with the effectiveness of bone builders if needed later.

If your ostoporosis is not severe, you could consider holistic approaches, or Fosamax may even be helpful depending on scores. The problem is, you really can only take it for 3-5 years so what then?

Many of us start with a bone builder in order to have a quality foundation of new growth, and then "lock in" gains with Reclast or Fosamax.

Again, not sure what your situation is, and just sharing my own experience which was Tymlos, Evenity briefly, and soon, Reclast.

windyshores,
Thank you for the information you shared. I am 81 and very confused. I’ve always been very active, but now I’m fearful of breaking s as bone so I hesitate being too active.

Hey @windyshores - My blood calcium is typically really close to 9.5, but after starting Prolia, it dipped down to 8.9 (correction to my earlier 8.7 post). I have since boosted my calcium intake and it's bounced back to 9.6 on my last test. The results makes sense to me since I'm peeing out a lot of calcium (hypercalciuria, not to be confused with hypercalcemia). If my body can't get calcium so easily from my bones while on Prolia, it will drop my blood calcium.

Glad to hear Tymlos is working well for you. I would gladly leave some issues for something working well at this point.

I'm giving a training on calcium and vitamin D that includes PTH and hyperparathyroidism next month to the BHOF Bone Buddies support group. I will post the recording after the meeting. Might be a nugget in there for you.

Hi @awesomemomx2 - I'm glad it's been helpful for you. I'm presenting out on "Calcium and Vitamin D for Osteoporosis" next month for the BHOF support group Bone Buddies. I plan to record an post the video shortly after. You can join live if you like. We usually spend a few hours on Q&A after the presentation. You can go here for info https://www.bonehealthandosteoporosis.org/patients/patient-support/bhof-support-groups/ .

I have 25(OH)D checked just about every blood draw, which lately is about four times per year. I keep changing my supplements so I'm hunting a bit for the optimal intake. I had three 24 hour urine tests in 2023, but that's because I'm trying different thiazides to lower my urine calcium. Not doing so well yet, but still optimistic.

Dear @formisc ,
Wondering how it is going? Have you had any fractures? How are you doing on the medication? I would love an update. Thank you. Hope all is going well!

Hi awesomemomx2,
Thanks for the concern. No, no fractures, thank goodness. Am doing well on the Alendronate - no significant side-effects. But because of my Sjogren's, i struggle with dental health and am worried everytime i need to go to the dentist because of my low CTX. I plan to do another CTX in a few weeks and will update again then

I just received results of the CTX and P1NP blood tests and promised to post when received.

Quick background. Took 2 Prolia injections in 2022. Had very good results with the DEXA score in May 2023 so my PCP said I could quit Prolia. Yea. BUT he expected me to quit COLD TURKEY and was not aware of the need for any relay drug.

I sent him a study about needing a bisphonate to lock in Prolia gains and prevent fracture associated with stopping Prolia. He actually read the study and ordered Fosomax. I have had no side effects since starting it a year ago.

I had no previous BTM tests....so no baseline. At my doctor appointment on May 3rd, we discussed how long I should continue to take Fosomax and I requested the BTM tests. I also told him I was thinking to continue Fosomax for 18 months (which is 24 months from the last Prolia injection.)

He reluctantly agreed to order the tests as he does not think they are particularly helpful; there was also an insurance coverage snag that I hope has been straightened out.

Here are my results: CTX 313; P1NP 31.6. After fasting and early morning blood draw.

So do these results mean that I am losing bone a little faster than building bone but perhaps nothing really concerning as both are within the reference numbers. I have not yet discussed this with the doctor but do not expect him to be of any help in evaluating these results.

Hoping someone here might have some thoughts. I gather from discussions that it would be nice to see the CTX reach a target of 280. Or to see the ratio of the two tests be approximately 8:1. Can this happen on continued Fosomax use?

Thinking I would like the tests repeated in 6 months to see some sort of trend rather than a one-time snapshot.

Any thoughts appreciated.

The 8:1 ratio is simply something I calculated and has no basis to substantiate it. Probably has absolutely no value. Just conjecture.

Thanks, rjd, for sharing your BTM results. I can't comment on P1NP as i have no experience with it myself but your CTX result of 313 after 1 year of Fosamax and 18 months from your last Prolia shot would seem to indicate that you are quite safely out of the most dangerous rebound phase. Your plan to continue Fosamax for another 6 months appears reasonable to me and is something that i am considering myself too. But, to provide a more gentle, easing-off path from osteo medication, i am thinking of going on a reduced dose after 12 months (but depending on my CTX results). Since i can only get my Alendronate in the standard 70mg dosage, i am thinking of just extending the interval between doses to say, every 10 days or maybe, every fortnight.

I expect your CTX to continue to decrease as you continue on your Fosamax but much might depend on your base CTX number which you do not have. You might also want to consider doing your next BTM in 3 months to have a better and more prompt gauge of your Fosamax's continued efficacy

Wishing you all the best

Thank you for sharing your knowledge on this matter. I still struggle with understanding conceptually the osteoclast/osteoblast connection.

Especially good to know that the CTX may continue to decrease with further Fosomax use. But it would be nice to know what the CTX target might be.

I would like to stop the Fosamax ASAP. Ever since I learned that a problem with this medication is that it interferes with the removal of old bone so that new bone may be forming on a foundation of old bone rather than on a cleaned up base (or not even new bone forming at all) I have wanted to say good-by to Fosamax.

How long do you think you have to be off Fosamax in order to reset if future treatment with an anabolic is warranted????????

Best of luck with your own osteo progress and thank you. You certainly have helped many of us on Connect.