Prolia Shots for Increasing Osteopenia
Comments
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Jaybird - it may make a difference where you get the shot. I get mine from my GYN, but I know some people are only covered it the shots are given at the infusion center & ordered by the MO.
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jaybird - my insurance covered Prolia for me with just my normal co-pay/co-insurance but my injection was given by my oncologist at the infusion center. This is the same situation in which IV chemo is covered by your medical portion rather than by your prescription portion specifically because it is given in the medical setting rather than like any other prescription drug that you pick up, or take orally. Hopefully your MO can order it and administer - it seems like then your insurance ducks will line up.
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I have my shot done in my PCP's office by a nurse. It sounds like it might be a coding issue. I would ask your doctor's office or nurse to check the codes and file again. She always checks with my insurance before the shot to see if it's covered - each and every time, which seems unnecessary to me, but they just don't want patients to get stuck with the bill. Same with things like shingles shots - they always ask me to check with my insurance beforehand.
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Mine were given at my endocrinologist's office. Unfortunately, my insurance company removed Prolia from the formulary for 2020 (and then I had an allergic reaction anyway). I hope you're not in that situation re the formulary.
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Thanks Gals!
I spoke with the rep at Amgen. He confirmed that my insurance doesn't cover it under prescriptions but does under medical. I know my onc's office is trying to get it covered. He really wants me to start with Prolia. My insurance will cover Reclast. My osteopenia has gotten worse so I, too, really want to start (try) Prolia. I'd even do my own shots but again that would be a prescription. This BC nonsense is hard on my finances.
J ~
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Thanks edj3 -
I'd like to at least be able to try the Prolia. I'll speak w/my onc about the formula change. He's really on top of things IMO.
Can I ask how many shots you had before the formula change and how you knew about it? Thanks!
J ~
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jaybird - as you discovered - the shots are covered under medical care but NOT under prescription drugs. Edj3 is talking about a "formulary" change (list of drugs covered) and not a change in the drug's formula. If you're covered under your insurance's medical benefits - what are the rules & parameters for that? Is it just a matter of where the shots are administered? BTW I've never talked to anyone who had Prolia covered under a prescription drug plan.
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MinusTwo is correct--I'm talking about the formulary which is the list of medications my insurance will cover. I knew it was removed for 2020 because I checked before the new year started. So I paid out of pocket for that second shot as it wasn't covered anywhere (medical or prescription). Oddly, Tymos IS covered.
This is a very expensive, fairly new drug that I inject every day in my belly. You can only take it for two years because after that, the risk of developing osteosarcoma increases to an unacceptable level. Tymlos should not be given to people with unexplained elevations of alkaline phosphatase, women with Paget's disease of the bone, pre-existing bone cancer, prior radiation therapy, hereditary disorders that increase their risk of osteosarcoma, and certain other conditions.
I would have preferred to stay on Prolia but that allergic reaction with the second shot ended that option.
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Prolia update:
As stated previously, my ins. co. would only cover Prolia under "medical" coding not "prescription" coding (despite covering Reclast, Fosamax, etc.). He pushed and did get it covered so I got my 1st Prolia shot on Dec 16th. All went well with the shot (no negative reaction) so I'll see him again at my usual 3 month interval and then Prolia again 3 months after that. He thinks just 4 shots (2 years' time frame) as long as my next bone density test shows improvement. One day at a time with this dang disease. I'll be on an AI for another 8 years so who knows what will happen with my bones.
J ~
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jaybird - it can take up to two years to show improvement on Prolia, so I would keep an open mind about continuing beyond two years. I had a DEXA a year after stopping - I had six years on Prolia - and it showed no decline. I am due for my next DEXA at the regular two year interval next month, so it will be interesting to see what my density looks like. I had reversed from the brink of osteoporosis back to a normal reading, but I will have been off of both letrozole and Prolia for this entire two year interval, so it should be a more true measure.
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my oncologist said 2 to 3 years on Prolia. I've had 3 shots. Due for my next DEXA around the same time as next shot.
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Just reviewed with my OB/Gyn & my MO. They both said that Prolia shots have now been tested & researched out to 10 years so and they are comfortable prescribing for that long. Just finished 4 years. However, at my request I am going to meet with a bone endocrinologist in January to get his take on continuing the shots.
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Hi Everyone,
I guess I meant to write that my onc isn't thinking beyond 2 years (re: Prolia) right now pending the results of my next bone scan in 2 years. For sure I'm on the 10-year AI plan but no current thoughts beyond being on Prolia past the next 3 times (2 years). If he says stay on it I'll stay on it. I trust him.
J ~
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I saw a bone endocrinologist who specializes in osteoporosis, bone drugs & esoteric things like ballet dancer's legs & runners bones. Basically he told me Prolia is now rated safe for 10 years. I just completed year 5. You should NOT miss your 6 month shot by more than a few weeks. If you contemplate a drug holiday, there isn't enough information yet to say a Reclast shot would work, although there are ongoing trials with results maybe in the next year. His recommendation was Fosamax in the interim if you have to stop Prolia, which you can now take once a week.
If you have to have dental work done on Prolia, schedule the last 4 weeks before the next shot is due (5 months). But do NOT skip a dose.
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Minus - thanks for the information. I see my oncologist in April and I will talk to him about how long to say on Prolia. April will be shot #4. Bone density is due in the fall. Initially oncologist said 2-3 years. Just had dental cleaning today and go again beginning of June, but I do worry if I need dental work, which I'm sure I will this is good information.
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Karen: I was originally told 5 years. Now apparently the research extends out past 10 years. I'll be checking every year.
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I so wish I could take Prolia
I'll have to switch to Zometa/Reclast when I've completed the 2 years on Tymlos. Can't take Tymlos longer than that as there's a sharp increase in the risk of bone cancer. 0 -
Anyone have any dental extractions while on Prolia? I have a problem tooth that will be coming out next Friday. My biggest worry is the possibility of the jaw necrosis which I know is rare, but they talk about with this drug. My PCP said the risk is higher with those getting a higher dose of this drug (denusaub) with bone mets. My MO said we need to stop the Prolia shots. I had my last one in October.
Any experiences any of you have and things to prepare for?
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Jazzy - my periodontist said wait 6 months after the last Prolia shot. My new endodontist who is an osteoporosis expert said don't go more than a couple of weeks w/o the Prolia. He recommended transition to Fosamax if I had to have dental work. But of course that depends on your DEXA scans and how pronounced your bone loss is was.
You're 4 months out so I hope everything is OK. ONJ is valid complication but rare. Hopefully you'll be one of the majority who have no problems. Will you have a bridge or an implant? Please do let us know how it goes.
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MinusTwo- I will have an implant which will get sometime this summer when everything is healed. Thanks for your input.
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Jazzy,
Wishing you all the best with your implant. My dentist said he’s only seen necrosis with Prolia once in a very elderly woman with poor hygiene.
I’ve been getting 6 month Prolia injections since May of 2017. I’m finally seeing some improvement on my Dexa. I’m due for another this May. I’m going to see an Endocronologist when it’s time for me to stop taking it. Has anyone gone this route?
I’ve seen reports that you can stay on Prolia for 10 years? Does anyone know? Has anyone stopped getting the injections and what was the process?
My oncologist said you can just stop but I read that for about 6 mos. after you stop you’re susceptible to spine fractures. Does anyone know? Any guidance appreciated.
Blessings to all.
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Hi friends- dental surgery is done and recovery is underway. I had a good talk with the oral surgeon about my concerns with the Prolia usage and possible jaw osteocrenosis. He said any issues would be seen months from now, not right away but we discussed whether an implant is the best solution for me given my history. He said a bridge may be a better solution as every time you "go in", it increases the risk something could happen. So we will see how well I am healing from the extraction and bone graft by this summer when I return for my next visit and see what is best for my replacement.
Butterly- I have heard 10 years is okay to do, and my sister also sent me an article that said if you don't have the shots on a regular 6 month basis, you risk bone loss and more problems with fractures. In 2019, I had to reschedule an MO apt from Jan to March and the office would not let me get my shot in Jan when scheduled, but the person whh called me said the MO needed to see me first. I said "but I am supposed to have these shots regularly every 6 months." Fell on deaf ears, and I got it in March and Sept that year. Then last year, it moved to April and Oct because of his schedule. My bone health started decreasing again per my last dexa scan, and I knew exactly why. I like my MO, but less happy with the cancer center and talked to my PCP about having problems keeping on schedule with this and she recommended I get re-established with an endocrinologist. I am going to be workng on that next with my new insurance and move to some new providers. Don't miss your shot ladies, I think you have a few weeks to a month to miss it without the risk of loosing the benefit.
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Thank you Jazzy for the valuable information. Sending positive energy and love for your upcoming dental procedures.
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Jazzy - glad to hear that you're healing okay! It's so scary anytime you're having invasive dental work. Let us know how you're doing later on, too.
Just wanted to add my two cents - I had the same experiences as far as MO telling me I could just stop Prolia. It seems like most docs don't know how to treat osteoporosis patients. After scheduling the shot at my PCP's, they canceled due to Covid. They didn't call back for a month and a half. I was very concerned and spoke with my Endocrinologist who said one month delay is okay, but you shouldn't go longer than 2 months. The risk of fracture is higher for those who've already fractured, which makes sense. I had a talk with my PCP and told her what my endo doc said, so now she is aware.
I'm getting dexascans once a year as he recommended and so far my reports are excellent. My hips have improved and I'm osteopenia now only in my spine. I fell last summer, but no problems, thank goodness. I'm probably going to stay on it for as long as I can. The only concern I have is that I'll be on Medicare this summer and am hoping to find a supplemental plan that covers me for scans and Prolia.
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Butterfly: Please see my post of 2/3 about Prolia after I saw my new endodondist. No - you can't just stop cold w/o the bone reverting to the condition when you started. Lots to consider. Coffee is correct.
Jazzy: I waited a couple of months for jaw & bone to heal after my extraction before the "post" was installed for the implant. Then I waited another couple of months to make sure the post was firm before the implant was added. Mine was not the very front teeth. I was offered a temporary. but just learned to smile with my mouth shut. Fortunately I had this dental workdone before I started Prolia so I didn't have concerns at that time. So glad you're over the first hurdle.
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I face the same issue when I've finished with Tymlos--I cannot take it for more than two years as the risk of a very specific type of bone cancer becomes too great. And if I don't get Reclast infusions, I will lose everything the Tymlos is giving me.
I'm due for a second DEXA scan this summer; I will have been on Prolia for a year, followed by Tymlos for a year. I will be interested to see what my values were as they weren't terrible when I was diagnosed. I never fell but had two bones break while training/racing (pelvis and a bone in my foot).
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I had 1 Prolia injection in Dec. 2019. The MO asked me last month if I was on Prolia and I told him my insurance would not cover it so we are waiting until next dexa to see if osteoporosis is stable or progresses. I can't say why they would cover 1 shot and then decline the next 2-so I'm at their mercy. Going into my 3rd year of taking the AIs, I have no idea how my old bones are going to hold up.
No one ever asked me if I had a previous fracture. Looking back, maybe that would make a difference for insurance? I broke an ankle around the time of menopause (50-51) wonder if it was from a drop in estrogen. Anyway, as this topic comes up from time to time, I like to see how you are are doing and faring through the complicated world of all these different medicines.
Has anyone had a high risk fracture calculation done? On my dexa scores, it says not, but if interested I found this one on line.
https://www.sheffield.ac.uk/FRAX/index.aspx?lang=E...
According to this tool, I'm @ 28% risk, and 12% hip risk. This is over 10 yrs.
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My DEXA scan report came with a FRAX fracture risk score attached in the comments. It was all part of the report.
I'm coming off Prolia and switching to Xgeva due to a bone met. Just waiting for our insurance to all sort itself out & if Xgeva is denied then I'll go on a bisphosphonate IV instead. But my time on Prolia was uneventful. I'm due for a 2 yr DEXA scan this September so will find out then what it did for my density.
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Coffee- I will also be on Medicare as of May but only Part A since we still have health insurance through DH's work, but when he retires we will both be on B plus supplement. I'm looking at two different Advantage plans and I've been looking at what it covers regarding Rx. I didn't think to look at DEXA scans. Will add that to my list. I'm only having DEXA every 2 years since I've been off AIs for 11 years this month. Even without AIs, I have osteoporosis - I was on Actonel when on AIs. My oncologist is the one who recommended Zometa a few years ago, but it is too hard on the kidneys so Prolia got put on the table. Oncologist suggested 2-3 years. I will ask him next month at my 6 month check up. DEXA is in Sept or Oct. A few years ago, my pcp (who has since retired) said you could take biphosphonates for 10 years and she'd rather me on them in my 70s!! Prolia is not a biphosphonate. But I'm wondering if that is where the 10 years come from. Jazzy and Coffee thanks for the information
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Just wondering does anyone have increased fatigue and hair loss with Prolia? I have been on it for a number of years and I swear it causes hair loss and at times terrible fatigue.
Sharon
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