Alternative med when coming off Prolia
I had undiagnosed celiac disease till I was 49. With that came Osteoporosis.
I was on orals for years , then on Prolia and had 5 spinal fractures(all repaired) in 2023 .
Then Evenity for a year. No improvement with Dexa then back on Prolia.
Now so many side effects and no improvement my MD rheumatologist suggested
Tymos.
OMG just read thats the worst one to be transitioned to. Anyone ever experience a transition from Prolia to something else?
Desperately asking for help.
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cfic, the trouble with Prolia, as you probably already know, is that it stops the cells that remove older, fissured bone from developing. But stops them in their final phase of development. When you stop Prolia all of those cells that have collected over the time you were on the medication are released. Then patients commonly experience multiple fractures unless they take a drug to clean up all those cells before they can destroy your bones.
The drug most capable is Reclast. Of course, it has it's own dangers. Some have had success taking the oral medication alendronate (Fosamaz), but with celiac you might not be eager to take alendronate.
You could try Reclast, and may have success with it. Because some have such bad effects from Reclast, I'd probably try to have a lower dose with a pre steroid and very slow infusion.
Tymlos is a marvelous drug. You might try the year of Reclast lower dose and then transition to Tymlos or Forteo.
Tymlos builds good bone --the best to my way of thinking but it won't stop the flood of osteoclasts that would endanger your bones. You probably successfully transitioned to Evenity even without gain in bone density.
Have you been back on Prolia for only a year? Have you ever gotten bone markers.
It could be safe to use the orals again, but I think your markers need to be monitored to be certain to help avoid fracture.
Did you have five fractures while on Prolia? or were they from long use of oral meds.
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1 ReactionOh such a great reply. Well years back I was on Actenol, in my 40's Fosamax. Boniva then put on Prolia 2019 for about 4-5 years. I was then seeing a pain management MD who gave me several injections of steroids in my SI joints and I went into a "steroid rage" so to speak. The pain was unbearable so after an MRI , I had 2 lumbar fractures repaired with kyphoplasty. Within 2 weeks I had 3 more fractures. One more lumbar 2 thoracic. ( 3 more kyphoplasty's)
Put on evenity 1 year have had 1 Prolia shot since then in 6/2025. Late fall i was coming back to my home ( snowbird) and thought let me hold off a month like taking a " honey moon" well that was dumb of me but i was having so many pains even b4 the 6 months when i was due early this past December. So currently on nothing , tymos scares me so rethinking just going back on Prolia. Yes orals with celiac are not always beneficial due to absorption issues.
Embarrassingly I dont think I get bio markers done for bone turnover. I have labs pending and a call out to my rheumatologist. If there is anything else you can suggest with this I am however going to discuss some that you sent with my MD. Im scheduled for xrays and am so scared because I believe I have micro fractures.
I can't thank you enough for anymore insight as I am falling apart.
Ty.
Cathy
cfic, I'm afraid the Prolia gap is endangering your bones more than the Prolia itself. Fractures can occur within months of stopping Prolia.
It does sound as though the years of Prolia are implicated in the fractures. Prolia makes it impossible for the bones to repair micro fractures, while creating new bone over those fissures.
It is interesting that you are afraid of Tymlos, but it hasn't been studied with Prolia, anyway. But Forteo has been found to work better for bones than Prolia or Forteo alone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6980341/ This is what I'd want for you, but it is crucial for you not to wait for the Prolia injection, or maybe an injection of zoledronate. it is easier to get a lower dose of Zometa than a lower dose of Reclast.
Bone markers aren't mainstream, though they should be. But especially in a case like yours. It is probable that the particles in your blood representing bone breakdown (CTX) are very high currently. And the particles representing bone repair (P1NP) very low. Forteo is very good at repairing micro-fractures.
It would be best not to wait any longer for the Prolia injection, even if it is your very last one.
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1 ReactionOh ty again I wish you were my Dr. My rheumatologist barely answered me back stated again to use Tymlos, Forteo, or Temiparatide, nothing about Reclast.
No answers on markers etc.
Im going to read the link you sent. At this point I think I will try the Tymos as im not sure she would prescribe Zometra for me. Also I just invested in an OMI PEMF pad incase your familiar with it. I wanted to use it but she my MD had no idea what it was. I know Tymos has its side effects like fatigue and dizziness. I just feel so hopeless when doctors can't even call you back when asked.
You are so kind.
So if it had to be between Tymlos or Forteo which would you choose for me? Tymlos is already ordered but not picked up yet.
Cathy
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1 Reactioncfic, Tymlos.
You may have transition from Prolia with Evenity. And may be in the same position with rebound of someone only having had one Prolia injection. Bone markers would be reassuring, but many doctors don't see the necessity.
Tymlos is thought to be stronger than Forteo. But it is also a very kind drug. Side effects are usualy only for the first four hours, though some people have no side effects. And those effects usually go away if you stop the medication. I've been taking the similar medication, Forteo, for almost three years. I so like the drug, but would take Tymlos readily.
Y0u've been on anti resoptive medication for a long while, except the year of Evenity, which is anabolic and antiresorptive.
Tymlos causes low blood pressure pretty quickly after the injection, so for the first week or so plan to be careful of balance. The medication pulls calcium into your bloodstream which dilates your blood vessels. It makes the heart beat faster and can cause headache. Caffeine and salt constrict our blood vessels and can lessen the chance of dizziness, headache and palpitations if you take a tiny bit of salt (an olive or a corn chip) .
Some inject in the belly I always use my thigh as it slows absorption because of less blood vessel activity.
I hope this works really well for you.
Oh, you can buy CTX and P1NP the best price is at Jason Health.
Item code Item Name Item Price
qt16609 Procollagen Type I Intact N Terminal Propeptide $80.00
qt17406 Collagen Type I C-Telopeptide (CTx) $50.00
qt34604 Lipoprotein (a) $35.00
Lab Collection Fee $18.00
Grand Total $183.00
Kind of pricy out of pocket.
The endocrinologist I see orders them every three months, but even so I buy more sometimes.
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1 ReactionI'll be curious about your experience with the pulsed electro magnetic field. Did you get the rings or the large mat?
Oh goodness ty going to do it and use this pad as well. Ty for info on test.Well i bought the full mat i had been using based on company's recommendation s on osteoporosis. htz 10 for 10 to 20 mins. Then there are studies that say longer. My main thing is a have to put double comforter and some foam pillows due to its firmness. They said I could put it under a 12 inch matress for more comfort so I may try .
So yes the injection, I will use my leg too. Thinking b4 I go the bed instead of the morning.
I am so blessed with your feedback I can't ty enough.
Pick up script tomorrow.
Oh also on Algecal, K2 Vit D , multiple, omega 3, collagen, stronium, etc. Worked in nutrition for 40 years but at 70 I could use a nutritionist.
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1 Reaction@gently Thanks! I found it a little difficult to find the P1NP test so am adding a direct link here:
P1NP:
https://www.jasonhealth.com/test/16609-procollagen-type-i-intact-n-terminal-propeptide
The search at Jason Health found the CTX test no problem, but I will add it here also for completeness:
https://www.jasonhealth.com/test/17406-collagen-type-i-c-telopeptide-ctx
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1 ReactionThanks, kfhoz.
Since this was my first dose of Prolia and took Boniva years before she said not to get next shot as side effects were so bad including the fatigue but to increase calcium and vit D and see her in 6 mon, she what she says then.