how do you get off Prolia?

Posted by sheilad1 @sheilad1, Oct 27 8:28am

A friend of mine had osteopenia and her doctor put her on Fosamax despite My showing her the studies say not to. They transitioned Hard to pro Leah because it was “easier“ getting a shot twice a year. Over Covid She need a dental work and went off the prolia. The dental work got dragged out because of Covid And her numbers were in the toilet and suddenly she had a severe chance of a fracture. She went back on prolia and I nagged her endlessly To get a tubular bone score.
The TBS was excellent her overall chances of a fracture Is now very low.
She asked her doctor how she could go off Prolia now and he said no you should stay on it. That’s why your tubular bone score was so good. Which is ridiculous.
She wanted to other specialist and no one had a suggestion as to how she could get off Prolia other than to transition to Fosamax, which she doesn’t want to take either.
Another doctor said she could just stop taking prolia and bone density tests.
Has anyone here ever successfully gotten off all drugs?

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windyshores | @windyshores | Oct 27 8:35am

Most people do Reclast if they have done more than a couple of years of Prolia. But in the context of osteopenia, I have no idea. It is key to find a good endocrinologist.

I believe many doctors are no longer prescribing for osteopenia so it is too bad she went on Prolia, given the rebound problem.

If rebound means returning to osteopenia, perhaps that is acceptable to her. Reclast would manage rebound and keep any gains achieved with Prolia.

Hope she finds a good endo!

sheilad1 | @sheilad1 | Oct 27 10:07am

Yes she never should have been on anything. If she takes recast can she get off that?

windyshores | @windyshores | Oct 27 6:48pm

In reply to @sheilad1 "Yes she never should have been on anything. If she takes recast can she get off..." + (show)

@sheilad1 Reclast lasts a long time and does not have any rebound effect.

sheilad1 | @sheilad1 | Oct 27 10:09pm

That's great. how long would she have to take it for until she could stop all meds?

windyshores | @windyshores | Oct 28 6:28am

In reply to @sheilad1 "That's great. how long would she have to take it for until she could stop all..." + (show)

@sheilad1 my docs say 3-5 years but it depends on the person's situation!

I am not yet clear on how long it takes to "lock in" previous gains versus using Reclast to increase bone density itself. That is a question I will be asking my doctor.

Right now, according to my MD's protocols, I am all done with anabolics and have to rely on Reclast for any further progress. However, I am interested in doing Tymos and/or Evenity again then Reclast again so I would not want to do the full allotted time for Reclast this time . If I did one or two years now I would still be able to do a year or more in the future to lock in gains from repeated anabolics.

Of course, if I were satisfied with my DEXA's after the Tymlos and Evenity I have already done, I would just do a couple of years of Reclast now and stop for awhile! My scores have improved dramatically but I like the idea of "treating to target..."

susanjane77 | @susanjane77 | Oct 28 12:08pm

In reply to @windyshores "Most people do Reclast if they have done more than a couple of years of Prolia...." + (show)

I have been on Reclast for 5 or 6 years with no side effects. My endo was not thrilled with my latest DEXA score so now i will be taking Prolia shots. She prefer Prolia over Evenity.
I was told that you can only take so many years of Reclast, thus, it might be time to change years of the scores. Interested in hearing from anyone that has taken Prolia. I realize we all are different and some may have side effects while others not (my situation with Reclast..rather stay on it but if not working…try something else). I have been very lucky that i have had no fractures but again my DEXA did not show improvement😢

sheilad1 | @sheilad1 | Oct 28 1:12pm

Good luck.

windyshores | @windyshores | Oct 28 3:57pm

In reply to @susanjane77 "I have been on Reclast for 5 or 6 years with no side effects. My endo..." + (show)

@susanjane77 Prolia has a concerning rebound when stopped. You will have to do Reclast again to get off Prolia. Both are anti-resorptive so maybe bring an increased risk of atypical femur fracture or jaw necrosis with extended use.

Why does your doctor prefer Prolia vs Evenity. I hope you can ask about Evenity, Forteo or Tymlos after doing these years of Reclast. Evenity is also anti-resorptive in the latter half. All three will mean Reclast or Fosamax to lock in gains.

If your doctor wants Prolia after Reclast I would at least get a second opinion if possible. You could also consult with Keith McCormick, author of "Great Bones." My doctor, chair of endo at a major teaching hospital, doesn't use Prolia at all (unless absolutely no other option).

susanjane77 | @susanjane77 | Oct 28 7:32pm

In reply to @windyshores "@susanjane77 Prolia has a concerning rebound when stopped. You will have to do Reclast again to..." + (show)

I asked why Prolia versus Evenity or others. His responded that he saw better results with Prolia. Now, after reading how many do not like Prolia and the side effects are experiencing….i am beginning to question his choice.
How does one consult with Keith McCormick?

Anyone taking Prolia that like it?

Thanks for the response. Appreciate it.

windyshores | @windyshores | Oct 28 7:45pm

In reply to @susanjane77 "I asked why Prolia versus Evenity or others. His responded that he saw better results with..." + (show)

McCormick does phone or in person consults https://www.osteonaturals.com/

Apparently (from the YouTube by Dr. Ben Leder and other sources) Prolia works well to increase bone density. On this forum some are using it very short term to get a boost between Tymlos, Forteo or Evenity and a bisphosphonate (which locks in gains).

I have a friend who is 84 on Prolia who has no side effects. All of these meds are different for each of us.

The problem with Prolia is the rebound loss of density and increase in fracture.

Evenity is supposed to be very potent for bone growth so I am wondering why your doctor said Prolia was better than Evenity. Also the Evenity site suggests Prolia after Evenity but not the other way around (both are made by Amgen).

Lots to discuss with a doctor. McCormick might help and also a second opinion.

Are you seeing an endocrinologist or is this a PCP? Insurance tends to prefer bisphosphonates or Prolia because they are cheaper and the doctor may have to do a letter of medical necessity for Evenity, depending on your DEXA and history. Insurance can be a problem for us in getting meds in the proper sequence!