Connect
Support For Those Quitting Prolia
I wanted to start this Discussion as a support thread for those who have already decided to quit Prolia and are in the process of transitioning out of Prolia to share our knowledge, thoughts, decisions and experiences as i had difficulty finding such posts from the various other Prolia threads. Those who have already completed their transition from Prolia are most welcome to contribute their experience.
It would help if you could include some basic info such as TScores, BTMs if available, number of Prolia injections taken, what med you transitioned to, length of time on relay drug and any feedback on effectiveness/reaction to the relay drug.
To prevent overlap with other Discussions already on this forum, the reasons for quitting Prolia need not be raised and it will be assumed that you have already done your research and made your decision. It is hoped that this Discussion will focus more on any feedback/advice that can assist in the transitioning process i.e. not on the 'Why' (quit Prolia) but more on the 'How' (to manage the transition).
Maybe i can start.
Background:
My TScores from my 1st DXA scan in May 2022 were:
Lumbar Spine -1.3
Femoral Neck -2.7
Total Hip -3.0
Unfortunately, my PCP did not order any BTMs so i do not have any baseline numbers.
My 1st Prolia shot was in July 2022, 2nd in Jan 2023 and my 3rd in July 2023.
In Dec 2023 after 18 months on Prolia, i did my 2nd DXA and the results were:
Lumbar Spine -1.1
Femoral Neck -2.6
I decided to quit Prolia before the 4th shot and started on weekly Alendronate in Jan 2024. To date, i have taken 7 Alendronate tablets.
Feedback on Alendronate:
The relay drugs most often cited are Reclast (most frequent) and Alendronate. Alendronate is not recommended for those with esophagus issues as it can irritate and damage the digestive tract.
I decided on Alendronate instead of Reclast as i was wary of taking in a full 1 year's dose of meds in one go and also because i read that the timing of the Reclast infusion can be tricky and the wrong timing may necessitate additional infusions. With Alendronate being a smaller weekly dose, the timing is not really an issue provided there is no delay in starting it at the time the Prolia shot is due.
The 2 days after the first Alendronate tablet and also after the 3rd tablet, i had a bit of stomach pain which went away after i took Veragel. From the 4th week to the 7th week, i have had an achy feeling at the side of my left knee. More surprisingly, i had 3 episodes of tinnitus after my 6th tablet, something which i have not experienced for a long time.
All the above side-effects have been bearable so i will continue with the Alendronate. I pray for the side-effects to cease as i do not want to go on Reclast and i read that Actonel is not potent enough to mitigate the rebound effect.
I plan to do a BTM test in Mar 2024 and quarterly thereafter for the 1st year and a DXA at the end of the 1st year. Depending on the results, i may stop the Alendronate or perhaps go on half-dosage for another 6 months instead of stopping cold turkey. Will also do a BTM at 18 months and a BTM cum DXA at 24 months of Alendronate as the rebound window supposedly stretches over 30 months from the last Prolia shot.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
An update here about the tooth extraction and my CTX at the six week mark since the 225. My CTX has been drawn at the same lab and at the same time of day each of the last 4 times. This time it went down from the 225 to the 141 which was even lower than my first CTX of 145 after stopping the Prolia injection after 6/26/24 and not getting on Alendronate on 1/10/25. I found that to be very interesting. Perhaps I did not think I had exercised differently, but perhaps that made a difference. I had fasted before hand and had stopped biotin and collagen before each test. I really looking forward to seeing where my BMD stand now in January. I am hoping it has not changed.
In regards to the tooth issue I continue to be on soft foods. The extraction area seems to be healing. I am making sure I am following the necessary protocol of eating and mouth care. I am very thankful.
I will be getting a DEXA in January and will inform you about my scores after the stopping of Prolia after 2.5 years and starting on Alendronate for the year. From my reading you still need to monitor the situation closely for 24 months which I intend to do. Take care ladies and happy holidays.
-
Like -
Helpful -
Hug
3 ReactionsSo! interesting that CTX dropped. Alendronate must be working very well for you, awesomemomx2. Thanks for keeping us up to date.
@awesomemomx2
Expect you are relieved about your CTX going back down.....I too experienced some wide variations only one for which I had a rational explanation...after which the CTX dropped again. Nonetheless, all my readings were low enough relatively to not trigger too much alarm....but I would enjoy life more without the roller coaster CTX results.
how much longer do you plan on taking alendronate to counter possible Prolia rebound? Does your 24 month period of monitoring start on the date of the last Prolia shot or 6 months later when the next Prolia shot was due?
Excellent news: sounds like the tooth extraction process has succeeded and produced no surprises...
I will be very curious about your January DEXA score. I am still scratching my head about the disconnect between my DEXA result last June and the expectations it might reflect good bone building/holding pattern created by encouraging CTX and P1NP results.
Happy holidays to all.
-
Like -
Helpful -
Hug
1 Reaction@rjd That is a good question about when the 24 month countdown should begin. They say fractures can occur soon after you don't get your 6 month shot. I don't believe they have really said on the research. Does anyone know when the countdown should start?
I am just wondering, would you have started the Prolia, if you knew then what you know now?
@blueberre if you are asking me ? Due to a whole variety of reasons I will say no. I felt so angry that I had not been told about the important facture issue by none of my team of functional or regular practitioners before getting the shot. In, fact I was told I could quit it after 2 years. Finding out that was not true was awful.
The fact of the possibility of a severe rebound even after receiving just 2 shots was very scary for me!!! In fact it haunted me. Another of those reasons include what my age was at the time of diagnosis. I would have tried to have a second Dexa to make sure my 1st reading was correct. I now have endocrinologist which is very helpful. I didn't initially and had difficulty with finding one. But you know hindsight is always 20/20. My pool of info is so much more now. I have had compression fractures before starting meds so I am more at risk than many others which is a issue. Our journey is so individual, I just want others to be AWARE of all the risks and benefits,so you can weigh those as it relates to your own case. That is why this forum is so important. We have to educate ourselves and need others who are also exploring this to share what they learn online, in research , and their personal stories.
-
Like -
Helpful -
Hug
6 ReactionsSo sorry, I can understand. I read the results after being told to begin Prolia. I figured I’d take the chance of taking Bone Up pills along with vitamin K2 MK7 & D3. I will have to wait until I’m able to get a dexa. I am hoping & wishing you well on this “adventure”.
The endo I have now tells me my dexa shows severe osteoporosis. I would like to get a REMS but not readily available in my area. She also told me she doesn't give HRT for osteoporosis. My only options are Prolia or Reclast.Did not even suggest a Rems test to dig deeper. I know it just sounds like I don't want to know the truth, but I have so many questions. I would also like to know what the endo DOES give HRT for. I am sure I have that.
Although reluctant, I would not completely rule out doing Prolia again but only for 1-2 shots. I had no side effects except to my wallet. And the density increase after 2 shots was impressive.
It was so disappointing to lose most of the Prolia gains when I had a DEXA 2 years after quitting Prolia and using Fosomax for most of that time to protect against rebound. Still hoping the DEXA was wrong (my biomarkers showed good bone formation happening) but have not had another one as it would cost out of pocket and I am dealing with a newer, bit more urgent medical condition at present.
Get hold of Keith McCormick's book Great Bones. It will set out fully what you need to do to help evaluate your situation after a disturbing DEXA result. And even help understanding what might or might not be severe osteoporosis.
-
Like -
Helpful -
Hug
2 Reactions@rjd : Disconcerting but helpful to know that you lost your gains with Prolia after switching out to Fosamax. I've considered quitting on Prolia but your post affirms my inclination to stay on it for the long term.