Support For Those Quitting Prolia

Just an update on my latest (my seventh) CTX blood test done on 10 Jan 2026 approx 30 months after my third and last Prolia on 1 Jul 2023.

CTX 140 pg/mL (Sep 25: 128; Apr 25: 74; Dec 24: < 50; Sep 24: 54; May 24: < 50; Mar 24: 51)[range 171-970]

iPTH 3.9 pmol/L (Sep 25: 3.4; Apr 25: 3.9; Dec 24: 4.9; Sep 24: 4.4; May 24: 3.2; Mar 24: 3.5)[range 1.6-6.9]

Calcium (corrected) 8.8 mg/dL (Sep 25: 8.7; Apr 25: 8.7; Dec 24: 8.7; Sep 24: 9.1; May 24: 8.7; Mar 24: 8.3)[range 8.8-10.2]

Albumin 3.9 g/dL (Sep 25: 4.1; Apr 25: 4.2; Dec 24: 4.3; Sep 24: 3.9; May 24: 4.1; Mar 24: 4.1)[range 3.5-5.0]

My CTX has gone up moderately to 140 (previously 128 in Sep 2025 and 74 in Apr 2025). Quite relieved that the increase has slowed down to a slower pace

@vagirl57 what type of medical provider is your 'bone specialist' (the one saying you do not need a DEXA) if you are considering an endo referral request?

I am new to this forum but searching for answers. I am in a dire situation. I started on Prolia at age 42 with a T score spine -4.1 and hip -1.8. I was recovering from anorexia nervosa and had been in surgical menopause for a number of years. I was already on an estradiol HRT patch (still am) but it did not stop bone loss. I was in a weight gain process so was advised to start prolia instead of an oral bisphosphonate. This was April 2014. I have been on Prolia since April 2014. I was due for my next prolia injection on January 28th, but was informed insurance denied approval because my dxa scores are too high. In 2024 they were -2.0 T score spine and -.8 T score hip. This is after 10 years of prolia. I now have to wait until late February to "consult" with my nurse practitioner who prescribes the prolia, to discuss Reclast. It is uncertain whether insurance will cover this or not based on my now higher scores. Two days after the denial and cancellation by my NP of my appointment for prolia, I went to urgent care with pain in left buttock, left leg, and groin. It is nearly impossible to lay down and hard to sit long. Initial xray showed wedge shape of my L5 and orthepedic dr. suspected compression fracture. However, next day MRI did not show that, but shows L5-S1 disc degeneration with bulging. There is a wedge in L5 but no fracture and they are not calling it a compression.
I am waiting with complete and total anxiety with the clock ticking now one week past the six month point when I was due for Prolia. I have three more weeks to wait for consult and who knows how long after that for approval of and given Reclast. I am not sure what to do. I am 53 years old, just lost my husband last year to lung cancer and now my elderly father is moving in for me to take care of. What will I do with rebound fractures in my spine? I am scared to death. Insurance is not budging on the Prolia. I am at high risk of rebound as I have been on it for 11 years and had severe scores when I started, hence a greater more dramatic loss to bear now off it. With my spine vertebra now already in a weakened state what are my chances? Who can I turn to and how can I fight this alone?

I am new to this forum but searching for answers. I am in a dire situation. I started on Prolia at age 42 with a T score spine -4.1 and hip -1.8. I was recovering from anorexia nervosa and had been in surgical menopause for a number of years. I was already on an estradiol HRT patch (still am) but it did not stop bone loss. I was in a weight gain process so was advised to start prolia instead of an oral bisphosphonate. This was April 2014. I have been on Prolia since April 2014. I was due for my next prolia injection on January 28th, but was informed insurance denied approval because my dxa scores are too high. In 2024 they were -2.0 T score spine and -.8 T score hip. This is after 10 years of prolia. I now have to wait until late February to "consult" with my nurse practitioner who prescribes the prolia, to discuss Reclast. It is uncertain whether insurance will cover this or not based on my now higher scores. Two days after the denial and cancellation by my NP of my appointment for prolia, I went to urgent care with pain in left buttock, left leg, and groin. It is nearly impossible to lay down and hard to sit long. Initial xray showed wedge shape of my L5 and orthepedic dr. suspected compression fracture. However, next day MRI did not show that, but shows L5-S1 disc degeneration with bulging. There is a wedge in L5 but no fracture and they are not calling it a compression.
I am waiting with complete and total anxiety with the clock ticking now one week past the six month point when I was due for Prolia. I have three more weeks to wait for consult and who knows how long after that for approval of and given Reclast. I am not sure what to do. I am 53 years old, just lost my husband last year to lung cancer and now my elderly father is moving in for me to take care of. What will I do with rebound fractures in my spine? I am scared to death. Insurance is not budging on the Prolia. I am at high risk of rebound as I have been on it for 11 years and had severe scores when I started, hence a greater more dramatic loss to bear now off it. With my spine vertebra now already in a weakened state what are my chances? Who can I turn to and how can I fight this alone?

@teardrop, you really are in the thick of it and I'm sorry for all these converging troubles.
You might call the practitioner's office to secure a cancellation. I would email and health message the NP.
Your insurance co may well know that appeals take so long that you would opt for a protective drug in the interim. You could though choose an oral medication like alendronate (Fosamax), for a few months and wait to see if the approval is successful, as I suspect it would be with an aggressive appeal. While it is terrible to be left in this position, going off Prolia could prove advantageous, especially with the possimle impending surgery for the bulging disc.

Your scores look really good and may be even better since 2024, so congratulations on that.
Sometimes bulging discs resolve on their own, but there are minimally invasive procedures like microdiscectomies to resolve the the pain.
The drawback with Prolia is that the bone it creates has a difficult time repairing itself. If you were to need a disc replacement or fusion, it isn't the best medication for maintaining hardware. Your insurance isn't trying to do you any favors, but may have inadvertently done so.
You are, no doubt, in grief. That loss makes everything unbearably difficult.
I hope your dad's moving in provides a wonderful opportunity to be closer to him. I had that kind of miracle in my 60's. What I wouldn't give for another day with him.
Bless your struggles with some luck.
https://www.sciencedirect.com/science/article/pii/S1297319X25001162

@teardrop

I am trying to understand if you have taken an anabolic osteoporosis med.

@gravity3
No I have not. I was first diagnosed with osteoporosis at age 34 in 2006, one year post surgical menopause. I had had a hysterectomy for endometriosis and he took both ovaries as well. It was very very hard for me to go through surgical menopause even with hrt. I had every imaginable menopause symptom to the ninth degree. It was my choice to have a dxa scan as a baseline. It was approved by insurance even at age 34 based on my surgical menopause status, and the fact I had been on thyroid meds since age 16 9still am for hypothyroidism). My first scores were -3.2 T score spine and -1.8 T score hip which was a shock at my age. I was prescribed Fosamax but refused to take it at that time as I was terrified of side effects. I was able to get on a full dose estradiol patch and took calcium, vitamin d and started doing weight training. My scores did move to -3.0 spine and -1.2 hip in two years, however, I became anorexic literally overnight around that time. I lost 34 lbs to a bmi 14 and went through six years of treatments and battles before ultimately gaining to a healthy weight. During that time my bone density plummeted even with hrt (you need a certain amount of fat to absorb it right). In 2014 with my scores being -4.1 T score spine my medical team again brought up medication. They gave me a choice of Reclast or Prolia. Oral wasn't a good choice as I was in the process of gaining a lot of weight to get healthier and we did not want to risk GI issues that would make this difficult. I was steered towards Prolia as I was told Reclast can be hard on kidneys and I had some labs that were off at the time (I had gone through a period of purging which really didn't do my kidneys any favors). I don't know how they got that approved without trying anything else. Oh yeah I did take Miacalcin for a year back in 2007 but ultimately stopped due to side effects. I do understand Prolia is a second line drug, not first, for osteoporosis. I think I was denied for Forteo but I don't remember. For whatever reason that was not an option. Maybe due to limits at the time on how long you can take it and my young age. I was fortunate that I didn't have a single side effect from Prolia and it increased my bone density numbers dramatically. But knowing what I do now about coming off it and the dangers of that, had I known then I would have said no to it. I did have trouble getting Prolia one other time. My husband had a double lung transplant out of state at Cleveland Clinic (he was denied at Mayo Clinic in our home state) in 2023. We had to live there for five months. I was due for Prolia while there and I knew that was coming so I had to try to get into a doctor there and get the shot. Cleveland Clinic would not take my insurance and I had to shop around before finally finding somewhere in Cleveland that took my insurance AND had a doctor available in the time frame. I really lucked out! But I remember the stress of trying to figure all that out in the midst of caring for my husband and working full time remotely out of state. He ended up having cancer found in his old lungs only after they were removed (it was missed somehow during all his evaluations) so he also required cancer care on top of transplant. Back to the Prolia, it was denied at first when the physician there put in an authorization, based on me not trying something else first even though I'd been on it for years, but somehow on appeal they got it approved. I have never fractured but I had stress reactions in left tibia several years ago, and a suspicious stress reaction in right foot second metatarsal that is still painful with a lot of dancing (I do ballet/modern dance and for a while pointe work). Beyond those no other bone issues other than very low bone density that had continued to rapidly decline during my anorexic years.

@gently
Thank you for your feedback! I would actually really like to come off Prolia anyway as it is such an expensive drug and there is the constant threat of being cut off it. I was hoping the transition would be more smooth than it is turning out to be. Insurance has a way of throwing a wrench in everything doesn't it!? I have thought about asking about alendronate since even if insurance doesn't cover it it is much cheaper to pay for out of pocket (or with a discount coupon). Its good to know at least that is an alternative if the Reclast is denied by insurance also. I work as a medical coder (one of my specialties is infusions) and I have seen a lot of denials for Reclast or zoledronic acid as well as Prolia for a variety of reasons, the biggest being dxa scores that are too high. Its such a paradox for Prolia, because going off it inevitably means those scores are going to plummet, but it will not continue to be approved once you reach a certain score over an extended time on it. It would be nice if there was a standard protocol followed when denied Prolia after so many years, instead of being left to figure out what to do and facing insurance issues! I'm definitely looking forward to having my Dad here!

@teardrop, even Reclast isn't always completely successful "Although the use of a sequential therapy with bisphosphonates (BPs) such as intravenous zoledronate (ZOL) can attenuate the rebound phenomenon, a single ZOL administration may not completely prevent the rebound VFX and BMD loss, in particular if more than 5 injections of Dmab have been administered (9-11)." Alendronate would be a stop gap, not to be depended upon, especially long term.
Is your insurance also denying bone markers?
The paragraph following the above https://pmc.ncbi.nlm.nih.gov/articles/PMC11403318/ recommends the markers
I wonder if https://www.amgensupportplus.com/ would have means to help.
It seems to me that both the insurer and Amgen are incurring liability that they would want to avoid. There isn't time for a protracted appeal. An emergency appeal is most appropriate. How is your provider responding. In CA the insurer would have 72 hours to respond to an emergency appeal.