I've been off Prolia for 3.5 years (missed injection due Mar 2020) and stopped the relay bisphosphonate (Actonel with a few months on Fosamax) In Sep 2022. At that stage, my CTx was 410ng/L.
I didn't have my CTx tested again until 7 Aug 2023, a year later, and found it was very high at 990ng/L. Another test 7 weeks later, so 28 Sep 2023, produced a similar result, 1000ng/L. My P1NP was 94ug/L.
Does anyone have any experience in monitoring their CTx after stopping the meds post Prolia? I came across someone on the Inspire website whose CTx climbed steadily for 15 months after stopping the relay bisphosphonate (to 792ng/L), then dropped to 582ng/L 4 months later, off meds. Extrapolating from that, it appears that bone turnover increases once off all meds, then reaches a peak and declines to hopefully a reasonable level of its own accord.
I'm hoping that my CTx of 1000ng/L which seems to have remained stable for at least 7 weeks is at its peak and about to reverse and start declining. I have no way of knowing when it reached this level - it might have been many months ago, so could have been stable for some time albeit at a high level. My options are to go back onto an oral bisphosphonate immediately for 1-2 months to reduce the turnover (which I really don't want to do) or to cross my fingers and have another CTx done in a couple of months' time.
Any input would be greatly appreciated!
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Arcadia10
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I think we have crossed paths in the past. My last Prolia shot was in Oct 2018. I started alendronate in May 2019. My Ctx at that point was 51. Even with alendronate my CTx went as high as 390 in June 2020 before going back down to 217 in Jun2022. I stopped alendronate at that point to get some dental work done. My last CTX in April 2023 was 289 and my bone density this last week was the same as last year.
Great to hear from you again, msw67. You were so helpful to me when I was trying to work out how to get off Prolia. I really appreciated the time and effort you put into supporting me. You seem to have done very well in your own journey and good to hear that the dental work didn't cause any problems.
I recall that you continued on with the alendronate beyond the Prolia rebound fracture danger period, also that you had pending dental work on the cards. Did you go back onto the alendronate after the dental work which is why your CTx was still low at Apr 2023? How long did you stop for when having dental treatment?
No. I haven't gone back on alendronate...last dose was June or July 2022. Tooth was extracted in Dec and has healed well. CTx in April 2023 was still low, but I have a televisit on Oct 9 with my doctor and I will see what she says. I may need another CTx.
I hope you get some resolution. I wonder if the difference in our experiences is alendronate vs actonel. My doctor was pretty firm that my choices were alendronate or reclast.
That's great that your CTx remained low at 10 months after stopping alendronate, msw67, and that your bone density is stable too. You must be delighted! Are you hoping to stay off alendronate in future? Possibly monitoring your CTx from time to time will push you in one direction or other.
You could be right regarding our different CTx outcomes being linked to the differing relay drug we were each on. I've read that alendronate has a much higher affinity with hydroxyapatite and so binds more tightly to the bone, also that it still shows up in tests years after the patient has stopped taking it, whereas Actonel doesn't. So that's an interesting thought - maybe the post-Prolia rebound period continues for longer on Actonel because its not as potent. So possibly that's why my CTx is still so high after a year off Actonel. I took it for 2.5 years and you took alendronate for 3 years, so not much difference except for the med itself and your CTx is low/normal now. I wonder if any medical professional has thought of looking at this.
I will find out more in a week what my doctor is thinking. My guess is monitor CTX and resume alendronate when that starts to rise. I think there are ongoing studies as to the best way of relaying off Prolia. It should never happened that women would spontaneously fracture. Give me a shout out in a week or so and I will give you an update. Hope you get some answers also. Maybe alendronate is in your future.
How did things go at your doctor's appointment, msw67? Did you have another CTx and, if so, could you tell me your result?
I finally decided to go back onto Actonel for 6 weeks. That was enough to reduce my CTx from 820ng/L to 410ng/L just over a year ago, after which I stopped the Actonel altogether. I'm going to have another CTx in mid-November and stop the Actonel if my result is around the 400s again.
So since my bone density was stable I will wait 6 months and have a CTX then as well as Vit D. My doctor will put me back on alendronate if the numbers start to rise. She says that alendronate does work better than actonel in preventing rebound. Good luck with going back on actonel.
Thanks for the update, msw67. I'm so pleased that everything is going well for you. Do let me know how things are with your bone turnover markers in 6 months' time.
I will probably have a DEXA done in Mar-Jun 2024, so two years after my last. At this stage I have no idea where my bone density has ended up 😧
Thanks, msw67 - will do. You're in a really good position and I do envy you.
I certainly don't want any meds in my future ☹️. Hopefully if I can just get beyond this elevated CTx hiccup, all will be fine and my CTx will start coming down.
In Jan 2018 I came off Prolia after 3 injections over 2 years as my dentist told me Not to Renew as he wanted to remove a lower jaw Left No 4 small tooth with abscess. He put me on antibiotics and got a surgeon to remove 3 months later. However I got two ...L2 and L3 Spine fractures as withdrawal from Prolia causes reabsorption. That means one's body starts to Dump calcium so my Dexa Scan showed a 45 per cent drop and I was unable to open dishwasher, only slide out of bed for 12 months. I was in pain and I weigh 8.5 stone, size 10 and was very active golfer, gardener, dancer.
The Osteoporosis Hospital gave me Infusions of Bisphosmates for 2 years to build up my bone density.
I wrote to Amigen as they Should Have Put A Warning on Prolia Not to Stop Prolia but to go on another Bisphosmates via infusion or weekly tablet. Small comfort from Amigen!
Since 2018/19 after I wrote to Amigen they now have a warning Not to Stop Prolia but I had to give up my job from Easter 2018 to date 2023. I paid for all my treatment and got nothing except a reply from Amigen.
I don't understand what you mean by Cat 1 etc. levels you quote..maybe it's Dexa Scan. My experience would warn you to visit a Hodpital Osteoporosis Specialist to advise you and avoid a private specialist as the hospital records are required under Freedom of Information unlike private specialists. I was told that just turning in my bed could cause Rib fractures, Spine fractures without an Osteo drug. I lived in fear for years, gave up golf, walking short distances and no career and income gone up in smoke.
I now consider Prolia the most dangerous drug ever prescribed. If you need teeth extracted dentists will be afraid to touch you. Prolia Stays in your System for over 6 months and even longer. I had to have my small tooth removed very carefully by a private Oral Specialist for 550 Euro. Crazy!
Prolia patients in USA have sued Amigen as they got teeth repaired, removed and the tooth infection seeped into their jaw and Prolia worsened the infection. They got necrosis of the jaw and had to have parts of their Jaw removed with none from other parts of body used to replace it. Not what I want.
One must thoroughly clean teeth twice daily, avoid alcohol, floss teeth, crowns or implants and have twice yearly dental clean. I'm now on a drug holiday from infusions of bisphosates for two years and 5 years since stopping Prolia but my L2 Spine MRI shows Osteoporosis with other areas Osteopenia.
Prolia changed my life for the worse and I will never forgive or forget what damage it did to me. I aged overnight and I'm so angry about ever going on Prolia which an Osteo Professor Consultant put me on.
Please consult your Osteo Specialist as there are safer options.
I'm so sorry this happened to you. Your fractures were obviously very painful and disabling if you had to give up work over 5 years ago. When you stopped Prolia in 2018, many doctors did not know that their patients were at risk of rebound fractures if they did not go onto a relay bisphosphonate immediately, although it had been publicised in the medical literature as early as 2017. It's a well-known phenomenon these days, although I did come across a doctor 2 years ago who told me "I didn't know this could happen". There appears to be a woeful lack of further education amongst some medical professionals into medications and their side effects, and their patients bear the brunt of their lack of knowledge. Understandably you're angry at Amgen and your medical specialists. You're certainly not alone in feeling this way.
The CTx test I was asking about in my post measures one's bone turnover so you can tell whether your bone resorption is too high which ultimately could put you at risk of fractures. This can be done at any time as it's a simple blood test. Usually a DEXA scan is only done every 1-2 years, so a long wait is involved to see if bone density has improved or not. A CTx gives an immediate picture of what is happening regarding bone turnover.
I've been off Prolia now for 3.5 years, but my bone turnover (CTx) is very high. I was asking whether this is normal after stopping Prolia and the relay bisphosphonate. A high CTx might just be normal for me, but I don't know.
Have you had a recent DEXA scan done? Were your results much worse than before you started Prolia?
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