Prolia Shots for Increasing Osteopenia
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Ive been getting DEXA scans every two years for at least 15 years. Unfortunately after chemo & rads, the osteopenia moved into full on osteoporosis (2014). I just had another DEXA this Tuesday. After 7 Prolia shots - and a TON of calcium & Vitimin D & weight bearing exercise & walking every day & etc - I'm still not back up to the borderline between the two. Although there is minor improvement, latest results show probability of osteoporotic fracture within 10 years is 19.7% and risk for hip fracture is 5%.
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MinusTwo - oh that's disheartening. On the plus side, I guess what we can't tell is how much it's slowed / prevented a further decline. Even if things didn't improve as much as you'd hoped, it stopped things from getting worse. I'm wondering if your docs might want to try something else. Prolia and bisphosphonates have different mechanisms of action. Perhaps the Prolia was targetting the wrong part of the bone remodelling process for your bone disease, kwim?
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Moth - I tried the biosphosphonates a long time ago and they didn't work with me.
However I just got a my chart message from my GYN. She is pleased by the small increase and also recommends staying on Prolia. The current plan is to keep going for 5 years, take a 6 months or 1 year drug vacation and then do another 5 years.
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sounds like they've thought it all through! and who knows maybe in a few years there'll be a new bone density drug. Stay safe! I guess you don't get snow in Texas?
We get many months of rain and usually snow for at least a few weeks. I have a big wooden deck in the back which I walk on to go out to play with the dog and my dh has the job of keeping it non slip. It gets all slippery and slimy from rain unless regularly cleaned. When frosts or snow threaten he sprinkles sand all over it. It's a pita because the dog and I track it back in the house and scratch the floors (it's also probably wrecking the deck) but we decided not falling was the priority.0 -
Has anyone stopped taking Prolia? Are there any side effects or precautions you've taken when stopping?
I've been taking these injections and have read that there's increased risk of vertebrae fractures when you stop taking the injections which is freaking me out.
I was under the impression I could stop the injections when I stopped Arimidex.This is a great place to get information so I'm asking for your thoughts/knowledge/ and experiences.
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No - Lots of stuff to read - pro/con/in between. Some articles say there may be a rebound effect. My MO and my Gyn have recommended that I continue for another 2 years to make 5 total, take a 6 month or year holiday & then start again. I'm not on Als but the chemo tanked my bones.
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Thank you MinusTwo. I have appointments with my MO and Gyn next month and will discuss. Fortunately, other than crowns and root canal teeth are OK for now. I do know there’s a process if one needs an extraction or extensive dental surgery. BC... the gift that keeps on giving. Keeping the faith.
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Butterfly, I self-administered my last Prolia shot (for now) today. I had been on it for four years with marked improvements. My MO's plan for me:
1. get a DEXA in the spring - for baseline,
2. give me an injection of a 'regular' biphosphonate in six months (don't recall which one, she said some studies showed it helps with transition)
3. see what the bone density would be some time after (she has a schedule in mind, I don't recall when)
4. depending on the bone density consider switching from AI (I am on anastrozole) to tamoxifen.
Since I take it one day / one year at a time I don't worry much what's going to happen a few years down the road. New research results come out every month. I am glad I have a plan for this year and will adjust as needed. It all depends on no recurrence anyway which is not a guarantee.
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Hi friends- I am two years off the AIs and still doing the Prolia shots. I did an updated dexa end of 2018 about 10 months after I came off the meds, and things were stable but not really improved (still in the osteopenia range). I discussed with my PCP a year or so ago and she thought maybe I could come off eventually.
My MO's office does not seem all that knowing if I should stay on it or not. I will see my MO for my annual visit in April and get another shot, but may go see another endocrinologist for his/her opinion. My PCP thought that might be a good direction to go, she is on top of bone health issue.
I have heard that once you are on it, you have to keep up with it, and with a family history of osteoporosis, I don't want to risk fractures either. I hate drugs you can never come off of.....
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muska,
Thanks for your reply. Let me know which transition regular Bisphosphonate your doctor is considering.
Jazzy,
Thank you for the feedback. I know what you mean about not getting off a med. I just worry about dental issues. I was never told that once starting Prolia injections it might be an issue to stopping the injections. My last Dexa hasn’t shown any improvement and I started injections in May 2017. Very distressing as I try to be an informed patient. Please let me know if you see an endocrinologist or another doctor and their feedback on discontinuing or keeping up with the injections. I’m wondering if this holds true for other Bisphosphonates?
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Butterfly- I was very slightly osteopenic when I started on the AIs, within 18 months, things were really moving toward the osteoporosis zone which had me distressed. The shots did help things to improve back up mostly to where I almost was but was hoping off the AIs, that my bone health would improve. I am not sure that is likely with my family history, but had heard from other women here that their bone health improved after they finished their 5 years on the AIs.
What my PCP did tell me is that the people who have more of an issue with the jaw necrosis are on higher doses of the denusaub drug (mostly for bone mets). My PCP has kept up with bone health issues and said she has just been to a conference last fall around this and that topic had been discussed. She has not advised either way if I should stay on the drugs. I am going to ask my MO if it is time to do another dexa when I see him in April. That may tell us more about next steps?
I have a friend who has pretty severe osteoporosis and did all the biophosphate drugs she could for a period of time. Then after being off them for 5-6 years, she started getting stress fractures again and now takes Prolia shots. She did not have cancer but says she is probably on these drugs for ever because it is preserving her bones.
I wish there was a good answer here, but think in the end it is a pros and cons game for each person about what is best. I will report back here after my April visit to the MO and any new ideas from him.
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Thanks Jazzy, please keep us informed. I’ll report back after speaking with my MO and Gyn. I know this is a journey of weighing the risks vs benefits of treatments and meds.Sending love to all!
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My periodontist did extensive research before I started Prolia. His recommendation to avoid dental problems was - let your system clear for 6+/- months before you have invasive dental procedures - think extractions. Then wait another 6 months+/- before starting Prolia again.
The good news is fillings & cleanings & normal dental procedures while taking Prolia don't appear to put you at more risk for ONJ
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Thank you MinusTwo. Quick clarification: Is optimum time to be off Prolia 6 months before I.e extractions with a waiting period of 6 months before beginning again? That would be a year without injections. Or would you begin again injection againonce healed after oral surgery?
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Since I didn't need an immediate answer, I didn't push. Just made sure that when it was time for my next Prolia show - that's when to have the dental work done instead of the shot. Not sure how long to wait before starting again. I guess it would partially depend on how extensive the dental work is.
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Ok makes sense. Thank you
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Has anyone had to have extensive dental work such as tooth extraction, dental implant while on Prolia? What precautions were taken?
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My oral surgeon said I would have to be off Prolia for a year ----- Some other doctors require 6 months. It's sure not good if you have a tooth ache.
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Butterfly - not a good idea. Fillings & cleaning are OK but not extractions. Before I started the Prolia my periodontist researched this for me thoroughly. He said at least 6 months from the last shot & best if longer. ONJ is a real, verifiable side effect. You can call the Allergan people and talk to them about it, or go to their web site and read about the potential problem.
Talk to your dentist. If he or she isn't familiar with ONJ, talk to a periodontist or an endodontist who is.
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Thank you for the replies. Just had a root canal through a new crown and hoping I don't have any problems. I wish I could just stop this Prolia but then I have to deal with my osteoporosis and potential fractures. Always seem to be weighing risks over benefits. My MO is going to send me to an endocrinologist if my numbers don't improve before my next injection.
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Butterfly - fingers crossed for you. I'm pretty sure a crown wouldn't cause a problem, but I'm not a doc. Hopefully a root canal through a crown is not considered invasive. Please keep in touch since all of us have the same worries.
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I too have heard that a crown and even a root canal should be OK while on Prolia. They want to crown one of my bottom molars that has been broken since 2011. It will someday fracture again, so they say. I have it scheduled for next month. I am now considering cancelling mostly because of cost and not so much worried about Prolia. I could re visit it again when I go back in June--however that is also the time of my next injection. It's all so much to consider. I think I should let my bone health drive the bus at the moment.
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ctm - A possible positive for doing the crown now - if it cracks/fractures again - will they have to do an extraction & an implant? That might be more dangerous with the prolia, but likely even more expensive. Maybe a good question to ask before your cancel - assuming you trust your dentist.
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I did have a crown and ended up with a root canal through the crown. I was told this is not a concern for Prolia because it doesn't involve bone.
My dentist said that the concerns with Prolia and dental work is when the dental work involves bone, such as a dental implants or extractions. My dentist said that they do everything they can to save the tooth and if they can't save the tooth, there is a process they follow. I don't know the specifics of that process. But, I know there are lots of people taking Prolia injections and there must be a protocol. I didn't mean to alarm anyone.
I was inquiring if anyone taking Prolia did have an extraction or dental implant and what the process was. My MO said that if this kind of surgery was planned he would delay an injection if and when necessary.
Thanks all for your replies
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butterfly - I had an extraction and bone graft fifteen months ago, and an anchor screw for an implant placed along with a platelet-rich plasma injection nine months ago, final implant with crown three mo the ago. I had fortunately had my final Prolia injection exactly eight months before the extraction, after receiving injections for six years, so the timing was ok for the extraction. This was somewhat of an emergency extraction due to an abscess and total absence of bone beneath a very old crown. Initially my dentist and endodontist were worried about ONJ but this situation was not connected to either Prolia or Femara. If the need arises for this type of treatment I would advise consulting an experienced oral surgeon - mine was a maxillofacial specialist who was very conversant. I think the decision on how to proceed will depend on timing of last injection, whether there is infection, and if any stopgap dental measures can be taken to stretch the time from last injection to reach the six month point. I have friends who have had extractions and implants but their timeline was much shorter than mine, less than a year from start to finish. My surgeon was super cautious, allowing six months of healing after the extraction before placing the anchor, then another six months before the crown.
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Specialk,
Thank you for sharing your experience. I'm sorry you had to endure those dental procedures. Your advice regarding precautionary methods and seeking specific medical treatment from a qualified professional is noted. Hopefully, I can avoid any major procedures in the short term. Be well.
For those of you farther along in this journey, I am also wondering if there is any special process in stopping these Prolia injections? Was it based on your DEXA numbers? I've read that we can't stay on this drug indefinitely, however how do you stop and are there rebound effects? Do you take another something else to help with the bone loss0 -
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Thanks everyone for all the info and sharing your own experiences.
I had neglected my dental health for several years and I do not wish to get behind again. Going to think a bit more over the weekend. I have a splint on my lower teeth that needs fixed. Think I can keep appt to do that, see them again in June for next cleaning and schedule the broken tooth for later in the summer/early fall. Of course he may talk me out of that plan, but we'll see.
In regards to stopping Prolia, I asked my MO if there is an exit plan. She said once off the AI and if Dexa improves I could stop and suggested taking something else and I forget the name she mentioned. I figure I will check the data again as something could change by the time I'm due to get off this little white pill.
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Thank you for this great information. I’d be lost without the incredible support system and information. Much love to all
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Butterfly - in September before I had my first shot, my oncologist said 2 - 3 years depending on next DEXA scan, but I think he is not going to repeat for another 1 1/2 years (2 years from last one). I have my teeth cleaning 2 days before my 6 month oncology appointment next month - I was going to push off the cleaning but decided best to have it before I see onc as I'll be due for 2nd shot in case I need any dental work. Due to gum disease, I'm supposed to go for cleanings every 3 to 4 months. I've quit AIs 10 years ago next month but I'm still osteoporosis on DEXA scan....He offered me Zometa a year and half ago, but wanted to think about it - and then my creatinine (kidney levels) was not good so before deciding, Zometa got taken off the table it because its hard on the kidneys so he recommended Prolia.
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