The Doctors Reply after Prolia AFF and now recommends Forteo
Your thoughts are appreciated: On Prolia six years: Three weeks ago I had a A-typical fracture. After the fracture, I suggested Reclast to my endocrinologist, after she wanted me to go on Tymlos. Insurance denied that and now she wants me on Forteo. This is what she replied to my question:
" "The reason why I didn't want to go with Reclast is that it is a bisphosphonate, which carries the highest risk of atypical femur fractures. Ongoing exposure to bisphosphonates only put you at higher risk of fracture of your other femur.
Yes, typically reclast/bisphosphonates are recommended after Prolia, but not in cases of atypical femur fracture unless both femurs were surgically operated on and fixed." " Does what this Doctor writes above make sense?
Please share your insights into next steps.
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@sbax75 just to be clearer: it is not a good idea to do Forteo (or Tymlos) after Prolia.
It won't help with rebound/fracture risk and it won't be effective. I could cite numerous sources: McCormick "Great Bones" and Ben Leder on YouTube for starters.
Most of us do Reclast after Prolia. If Prolia has not been taken too long, Fosamax can be used. Reclast is IV once a year usually.
I have seen combination studies on Prolia and Forteo (Ben Leder "Combining and Sequential Approaches to Osteoporosis on You Tube). https://www.youtube.com/watch?v=WXoz1NeUgg8
At minute 7:15 combo of alendronate (Fosamax) and Forteo is discussed as having no significant advantage but this does not deal with using that combo after Prolia. If anyone has a study on this, or if your doctor does, taht would be key.
At minute 36:05 there is a chart showing what happens going from Prolia to Forteo which shows a plunge in bone density which Leder says is even WORSE than the rebound after Prolia with no drug.
Unfortunately Prolia use for a few years with an atypical femur fracture presents a dilemma that I think is beyond the scope of this forum. It is very important to have an MD who understands the complexity of this situation. Forteo may not be a good option so maybe a second opinion would help.
Amateur advice would be use of CTX testing to time a Reclast infusion to minimize harm and maximize benefit, and then seek advice on when an anabolic (Evenity, or preferably Forteo or Tymlos) might be possible if you still need bone meds. Of course after any of those you will again need a bisphosphonate. A doctor should be able to tell you if there is cumulative effect and continued risk of AFF using a bisphosphonate for any period of time after Prolia- though it may not be known!
Again, based on the sources cited:
I would not do Forteo or Tymlos until the rebound has been adequately managed with bisphosphonates.
sbax75, yes, combination use of both a bisphosphonate and Tymlos. The bisphosphonate will slow but not prevent the effect of Tymlos. And the Tymlos won't hinder the bisphosphonate. Like you, I think that Reclast (I like the lower dose of Boniva as well as the possibility of stopping at three months which you wouldn't have with Reclast) protects against your greatest risk.
There was a study of Reclast with Forteo. I think Mayblin posted the link.
The only trouble with second opinions is that I don't think you should wait for treatment. And the wait could be three or more months.
Your best bet might be to ask your md for the three month Boniva injection.
I erased a longer post to you that I need to retrieve.
McCormick (author of Great Bones) does not recommend Boniva. @gently do you think it is strong enough to manage rebound from 6 years of Prolia?
I am not sure of the mechanism that leads both McCormick and Leder to say that Tymlos is not effective after Prolia and results may even be worse than doing nothing.
A study of Reclast with Forteo with people who had not done Prolia, had on advantage over Forteo alone according to Leder. But that study was not dealing with prior Prolia users.
@sbax75 could explore the possibility of more frequent lower doses of Reclast but I have no idea if that minimizes AFF risk.
I don't see any other choice but Reclast but I am a lay person and finding a good doctor for this situation is crucial.
windyshores, I appreciate your thinking.
The things that weigh on my thought processes follow.
Reclast exacerbates the already present and suffered risk of AFF. (Evenity also includes the risk) This risk is the reason that the Endocrinologist who knows sbax75's health history prevails over the general opinion of the chiropractor who doesn't know sbax75's history at all.
Forteo or Tymlos is not as effective after Prolia; "worse than doing nothing, is unsupported, unsupportable either by mechanism of action or by example.
If there were only the risk of rebound from Prolia, I'd be saying low dose Reclast. Low dose because of the already evidenced sensitivity of this patient to bisphosphonates. A reaction to Reclast might make exercise impossible in a patient with a newly fractured femur.
Boniva IV is not as effective as Reclast and so minimizes the risk of AFF and is shorter duration for blunting the effect on Tymlos. It makes "in general" sense to prefer Reclast to Boniva as McCormick does.
One of my consulting physicians (theoretically) would prescribe Reclast full dose-- never does partial doses. He sees rebound as the biggest threat, without seeing the patient. "Don't quote this as diagnosis," he says.
Remember, though, that it is her endocrinologist prescribing Tymlos, and sbax75 herself who is acutely aware of the risk of rebound.
Second opinions are important, but I worry about the wait.
It is possible to determine the strength of the non-fractured femur with MRI based finite element images. That would be better than guessing which is the greater risk--AFF or rebound.
@sbax75, I'm not happy to be speaking of you in third person and I apologize.
@sbax75
our very efficient moderator Colleen was able to recover my lost post.
@sbax75
I don't think Forteo or Tymlos alone would increase osteoblasts speedily enough to balance the increase in osteoclasts. Yes, I was referring to concomitant use of Forteo or Tymlos and Boniva. In your case Tymlos and Boniva. Although it would be uncommon in clinical practice, your situation warrants special care. https://pmc.ncbi.nlm.nih.gov/articles/PMC2810174/#:~:text=Zoledronic%20Acid%20(Reclast)%20and%20Teriparatide%20(Forteo)&text=Bisphosphonates%20suppress%20bone%20remodeling%2C%20and,blunt%20PTH%2Dinduced%20bone%20formation.
Though "rebound fractures" are defined as within the first 6 months. Risk remains (they think from evidence of fracture) for 18 months without a relay drug.
There are individuals who stop Prolia, without a relay drug, who do not fracture.
Boniva is ibandronate IV 3mg every three months. I think you'd want bone markers so that you can stop or reduce the bisphosphonate when CTX -- a measurement of osteoclast activity is reduced.
Tymlos would work as well if not better than Forteo.
Some people can't tolerate Tymlos, which is one reason to get a pen from the Radius rep. through your doctor.
I was looking at other research a few month ago which might suggest other options. https://pmc.ncbi.nlm.nih.gov/articles/PMC7121199/ I couldn't find the link.
Your doctor is smart which helps. Is she aggressive enough.
Odds are you may have suffered all you are going to suffer with Prolia. We want better odds.
To my thinking there is nothing that equals the counter effect on osteoclasts as well as bisphosphonates. If I couldn't get Boniva IV, I take a low dose of Reclast. Windyshores is the expert on low dose Reclast.
How long did you not tolerate oral bisphosphonates. I'm hoping you achieved some protection along with the misery. Bisphosphonates cling to the bone protecting it from osteoclasts because the osteoclasts can't adhere to the bisphosphonate. Their falling away causes apoptosis-- cell death of the osteoclast.
I wouldn't trust raloxifene to help. https://pmc.ncbi.nlm.nih.gov/articles/PMC8978765/
Might you message your physician with a link, maybe https://e-enm.org/upload/pdf/enm-2021-1369.pdf ?
I know there are too many links to struggle through. Your doctor may be doing a little research on her own. She seems like the good kind that would