Dr wants for me to start Prolia. I have been researching. Would like to know if anyone in this group is taking. Worry about side effects.
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It's good to read about your plan. I have read that osteonecrosis mostly happens with women who have the larger doses for cancer, and as you said, that the atypical femur fractures occur after several years.
So I met with my doc yesterday. I wanted to post the plan for me. He does give me some choice. I will do Tymlos for 18 months (I have done 9 months). DEXA in 5/23. Then, due to my sensitivity to meds, he will do an infusion of 1mg Reclast (full dose is 5mg). If I don't react I will do the other 4mg in a month or so. He will monitor me via DEXA and thinks I can do just one infusion to "lock the gains in" and take a break. I will do Evenity in the future if needed.
I really had a tough time deciding between Tymlos and Evenity. My hip is -3.9 as I remember but I have 7 spinal fractures. I believed I could do Evenity after Tymlos but not the other way around but doc says insurance may not cover. Hoping for some improvements! Good luck and thanks for the info!
ps I did not know Prolia was so good for spine. I may ask about a year of that after all, or at least discuss that option with Reclast to follow.
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it's always good to know as much as possible before meeting with your health provider, and this group has been very good at not just giving their own information and experiences, but in encouraging me to do other research on my own.
I was absolutely pole-axed by the osteoporosis diagnosis, and when my Doc put me on Evenity, I just went along. She did discuss a couple of options because I was concerned about the slight increase in risk of coronary/stroke issues, but in hindsight, it seems it was a pretty good decision (That said, who knows what tomorrow will bring?)
With the ability to control the dosage as well as you do, probably the Tymlos was the best option for you.
Let's face it, it's all a balancing act and we can only do the best we can do to try and maintain an reasonably active life with a positive outlook.
@callalloo I feel your post will mislead people if they do not read the article. The author concludes "For most patients with osteoporosis the benefits far exceed the risk of these two rare complications." The article also mentions that cancer patients taking larger doses are more likely to develop osteonecrosis. The risk of atypical fracture is higher after several years of use. Both are rare, as the doctor writes.
My doctor is giving me ONE dose of Reclast (with a trial of 20% usual dose due to sensitivity to meds) to "lock in" gains from Tymlos. There is no plan for long term use.
With my own painful and disabling spinal fractures, I encourage people to understand the risks of side effects versus possible benefits to health in a balanced way that brings health and well-being, whatever that path might be.
I am sorry for those with significant side effects. But fractures are life-changing too.
I appreciate how serious osteoporosis is. If it turns out the a short course of Prolia (because some doctors will recommend it) or a bisphosphonate can protect the bone growth by Evenity, et al., that's great!
But you cant do a short course of Prolia. Cant just stop taking it. You have to transition off with a bisphosphonate. Without doing this high risk of spontaneous compression fractures.
That is in fact the elephant in the room. If bisphosohonates were successful drugs, one could start on them in early osteoporosis and stay on them forever if needed. But they're not. So taking one to 'protect' non-bisphosphate drug-triggered newly-grown bone, seems unlikely to be a solution
Ask your doctor the following:
1. How long (for how many years) can I continue receiving Prolia.
2. At some point will I be required to take a "drug vacation" from Prolia or miss a shot?
3. If the answer to (2) is "yes," what is my risk for fracture while I am off Prolia after being on it for a time?
4. Please tell me about eye issues associated osteoporosis — specifically macular degeneration — and the role Prolia might play in this regard.
If your doctor cannot or will not discuss these matters find one who can and will!
The only way to take a drug holiday from Prolia is to transition off it on a drug from the bisphosphonate family. Stopping Prolia puts you at high risk for spontaneous spinal fractures. The maximum time you can go btwn injections is 7 mos.
I would also ask the doctor about bisphosphonate-related fractures, e.g., longitudinal femur fractures.
Prolia isn't a bisphosponate but is an anti-resorptive drug, like the bisphosohonates, so shares many of the same side effects. Perhaps there is some true 'safe period' for taking the drug without fear of adverse effects? I would want a doctor's answer to that question.
I was in Fosamax 5 years , stopped June I may start prolia. . If I stop prolia after a few years, does anyone know what meds I can use after ? I know many of the meds are in the same family and there is a limit 5 years. I know I will need something .
@hope19118 Sorry don't know enough about your situation to be helpful. What are your DEXA scores? My doc does not want me to take Prolia, but there are some on this forum who have benefited. Why are you switching to it from Fosamax? Here are some possible ideas, based on my doc but everyone is different.
If bone density is not good you could consider Tymlos, Forteo or Evenity and then "lock in" with one or two Reclast doses, then take a break- according to my doc, along with monitoring.
If your DEXA scores are better, maybe you could ask about doing Reclast, which lasts awhile, and with monitoring, take a break, along with some holistic methods of maintenance-? I recommend Keith MCormick's book. I believe he did meds then maintained with more natural methods. Not everyone can do that, and I would talk to a doc!
There is a whole spectrum between those two!
I took fosamax for 5 years. I stopped this past June. A five year limit. My Dexa only increased on left hip. . My spine has decreased a lot still in osteopenia but worse , close to osteoporosis. My right hip is the same as I started. -2.6
No improvement. Fracture hip is the concern. . I was told by a couple of doctors to possibly consider Prolia in the future . The future has arrived. I would prefer a bone building medication like Forteo , then use a protective drug to keep the gains . The protection drug is often reclast or fosamax . I question if that medication to protect the gains is safe since I already use for 5 years .
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