Prolia Shots for Increasing Osteopenia
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I will start Prolia shots at my OB/Gyn office in July after I have dental work completed. The shots are once every 6 months. They are "sub Q" so they can be given in the belly and I don't have to worry about the arms with lymphadema. My doc's office told me that the cost is covered by Medicare. I have the original, old-fashioned medicare so maybe there's a difference if someone else has the HMO plan.
The doc will do blood work before each shot, but since I'm still getting labs for the oncologist before my 6 month visits, that's easy. Maybe only 2 years, but it will depend on DEXA scans. I'll post about the side effects after my first shot.
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I have been reading the threads about bone health and Prolia and they have been really helpful. My MO told me that bone health was out of his jurisdiction and that my PCP would be monitoring it. When I mentioned Prolia to my PCP he said that I can't have a DEXA before October because I have to wait 2 years between them. I have been on letrozole for 3 months now, and after dx, I had a chest X-ray and CT that both noted degeneration in my spine. When I had my last DEXA they only did my hips and femurs and they were fine. So my questions are: (1) do I need to show osteopenia for the insurance to cover Prolia, or do I just need a doctor's order? (2) will a doctor prescribe Prolia even if I don't have bone problems? (3) is a spinal DEXA different from the hip/femur one that I have been getting? (4) should I have had a baseline DEXA when I started on letrozole, or soon after? (5) how do I find an MO that will monitor bone health (not to mention cholesterol, etc) because mine seems to be totally hands off. I like my PCP but I think the cancer-related stuff is out of his comfort zone. Can I just start cold-calling oncology offices to ask about how they monitor their BC patients? Better yet, can someone here recommend an oncologist in the Baltimore/Philly/Wilmington area that will also monitor my health for any AI-related issues? Thanks for your help!
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grandma3x - it is unlikely that your insurance would cover Prolia without both proven osteopenia that is worsening, or osteoporosis, and having tried other less expensive drugs like oral bisphosphonates and failed them, or have a co-morbidity that prevents you from using them. Using Prolia preventively is probably a no-go, and it also takes up to 4 injections - so, two years, to see improvement in density - this is not a fast process. A DEXA scan should look at two measurements - lumbar spine and hips (femoral neck is how I think it is termed) and those should show a T-score that indicates bone mineral density. There is also a test that can be added on, done on the same machine, called a LVA - which is a Lateral Vertebral Assessment that looks specifically at the spine beyond the lumbar score. I don't think it will matter if you wait until October for your next DEXA, and insurance will not usually cover at a shorter interval unless there is a medical indication. I did have one sooner than planned at one point but I had been on Prolia for a couple of years and developed intense hip pain so my MO ordered a DEXA to rule out avascular necrosis, and also bi-lat hip and lumbar MRI. As far as MOs that will monitor bone health, some do and some don't - some refer to your PCP or possibly to an endocrinologist - but with Prolia you will run into the same roadblocks due to the cost - it can range from $2500-$5000 per injection and you need one every six months. I receive my Prolia in my center, ordered by my MO, and it is billed to my insurance as treatment, not a prescription drug. As far as cholesterol, I think you would be hard pressed to find an MO who will monitor that, even if it is a potential SE from anti-hormonal therapy. My MO is pretty inclusive and progressive, does scans and tumor markers and Vit D levels, and we have never discussed my cholesterol - which is high, that is handled by my PCP.
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Special: Good summary!! Yes I always get results from 2 scans - spine & hip.
grandma3x - My OB/Gyn has been the doc who did my DEXA scans & monitored bone health in conjunction with regular female estrogen/menopause issues, long before BC reared it's ugly head. The first DEXA after chemo showed that those drugs had done significant damage. My PCP told me that the insurance should cover another DEXA after one year because there was a medical issue - and Medicare did cover it. The results from that one year scan were what tripped the Prolia train. My MO said he would do the shots, but since my Gyn has been following this for many years, I'll stick with her. As Special said, the shots will be given as treatment, not elective RX.
Maybe one of your docs will write an order for a DEXA sooner than two years based on the CT results? If so, maybe your insurance carrier will cover the test.
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Hi Grandma3x,
I will try answering your questions - to the best of my current knowledge and I am still very new to the bone health topic.
(1) do I need to show osteopenia for the insurance to cover Prolia, or do I just need a doctor's order?
Every insurance is different. I have a private plan through work and it does cover Prolia if one had breast cancer, is on AI and has increasing osteopenia. I don't know the details but I think all three above mentioned conditions must be proven in order to get insurance authorization. If all three conditions are met the patient is not required to try other drugs first.
(2) will a doctor prescribe Prolia even if I don't have bone problems?
I don't think so. And I don't see why one would want this drug in the absence of bone problems. It's a drug that has potentially very serious side effects.
(3) is a spinal DEXA different from the hip/femur one that I have been getting?
Spinal DEXA is the same test but it looks at your spine in addition to hip/femur. Both times I had DEXA my MO ordered both and I had both done at the same time. Hip/femur was fine both times, however spinal was not fine to begin with and showed further degradation 2.5 years later.
(4) should I have had a baseline DEXA when I started on letrozole, or soon after?
Where I am treated, it is part of the treatment protocol: they take a baseline DEXA of both spine and hip/femur before patients start hormonal treatment.
(5) how do I find an MO that will monitor bone health (not to mention cholesterol, etc) because mine seems to be totally hands off.
I am surprised your MO does not follow your bone health, especially since you are on letrozole. Have you asked why?
Overall, if you have been on letrozole for only 3 months there is absolutely no rush to start any bone treatment. I had been on anastrozole for 2.5 years before Prolia was mentioned the first time.
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Good morning- just saw this on FB, and will talk to my MO about it next month but it looks like they are finding more benefits to the denusaub drug which is what Prolia shots are made from. Any of you who are BRACA positive should read.
Denusaub and BRACA positive cancer
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All docs are different. My MO ordered a dexa scan before I started the AI. I had not had one previously though. My results, though below average, were not osteopenia. I am getting Prolia shots and my insurance approved it without question which surprised me. My MO and I discussed it and were both in agreement that it was a good idea for me for the following reasons:
1. I am very thin and have a small frame.
2. I had a local recurrence just 14 months after chemo the first time, despite being very low risk. This means my cancer is not behaving. I am taking it as much to reduce the risk of bone metastasis as I am for bone building.
It is very individual. In my case, I am thinking short-term. I want to do everything in my power to increase my likelihood to see my kids graduate. In this case, it means taking a drug whose long-term effects are unknown and which may have undesirable side effects. The risk is worth it for me. If I was 10 years older, might I make a different decision? Perhaps.
I think doctors should make decisions looking at the whole patient and the individual situation. If my doctor did not consider monitoring my bone health and/or other things that could potentially be adversely affected by the meds prescribed , it would be a big red flag for me.
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Hi ladies- just had my fourth Prolia shot. Getting better at adjusting to the SEs, although I felt more fatigue this time than joint pain. My MO said we will remeasure the bones again end of 2017. The one I did a year after I started the shots showed marked improvement. I continue to do weight bearing exercises at the gym too. Dosing up on CA and Vitamin D daily. Doing everything I can to keep my bones healthy!
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Thanks for the update Jazzy. I couldn't really determine any side effects. I understand my doc wants to do a DEXA scan after a full year. I don't know if that means after shot #2 or before shot # 3 (18 months)
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I had my first Prolia shot three weeks ago. Have felt some weakness or fatigue after it as well as increased pain in the feet that I have from being on AI. It is gradually getting back to where I was before the shot. I am not taking calcium but I am taking Vit D.
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Hi Ladies,
I just finished up 10 years of Femara this week and also received my latest bone density test which showed osteoporosis. I am thin and small boned and my 86 year old mother has osteoporosis so I am already at risk. I did not have my bone density checked before I was diagnosed but did have it checked in 2007, a year after starting Femara, which showed osteopenia. I took fosomax for 7 1/2 years and then one annual infusion of reclast last year. My osteopenia slowly deteriorated to osteoporosis just as I am ending Femara. I am scheduled to see an endocronologist and I plan to ask for prolia this time. My lumber spine went from -2.1 to -2.7 in two years. I have no regrets about staying on Femara for ten years but it sure did do a number on my bone density.
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Well, we tried. Saw my MO today and she said she could not get prior authorization for Prolia--in fact, she is having increasing difficulty getting prior auths. for a variety of drugs with a variety of insurers. I was scheduled to get my first Zometa infusion today--but given the SEs and the fact I have to drive up to Milwaukee early Sat. morning for a 3-hr outdoor gig, she said it was fine to postpone it. In fact, she suggests that because I am at low risk for recurrence/mets and reasonably low risk for my osteopenia (per baseline DexaScan done just before beginning rads) becoming osteoporosis, I can safely wait till I have a week free to feel like crap and do nothing after the Zometa SEs kick in; or even until after I change Part D carriers in October and the new plan kicks in--and then see whether it’ll be as stingy as (in)Humana Enhanced, or would pay for Prolia. She agreed that with my history of GERD and “chemical-origin” small stomach erosive lesion, it’s not worth even trying me on an oral bisphosphonate--and for now I can be safe with calcium citrate/D3/K2/Mg. and weightbearing exercise. (Ballistic weightbearing, as prescribed in OsteoStrong centers, is a no-no unless I want to loosen my knee implants...no, thank you).
I notice that almost everyone here getting Prolia is on standard insurance rather than Medicare. Unfortunately, I turned 65 months before it was time to start Prolia. It’s $5K per shot, our son has moderate-to-severe asthma and crummy insurance, so he is where we need to direct our healthcare dollars unless it’s a matter of life or death.......and with our son, asthma IS.
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Sandy - I am on standard, traditional, regular medicare and Prolia was approved to pay in full. Also my supplementary AARP/United policy paid the 20%, as they always do when medicare has approved the charge. The docs had no problem since I went from osteopenia to osteoperosis after chemo & rads. I am not hormone positive, so didn't have 5 or 10 years of those drugs. But I am HER2 positive and had 6 tx of Perjeta and a year of Herceptin. Are you maybe on an HMO/Medicare Advantage plan? My Prolia didn't come under my separate "drug" plan since it was given in the doc office/clinic.
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One observation a week after my shot last Friday, I actually felt okay last weekend after the shot which is usually when I feel some of the flu-like SEs. But what happened this time was more of a delayed reaction where I felt a bit worse this week. Tuesday and Wednesday were far worse for me than the first few days after. Nothing I could not get through, but after this being shot #4, perhaps my body took awhile longer to react to the newest infusion of the drug. A
Anyways, nothing I could not get through but though I would mention it as my SEs were a bit delayed this time. I feel like I am finally getting past it a week later!
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Chi Sandy. I have to pay for it here i Australia as I do not fit the criteria for our government subsidy. You have to have had a fracture or be dx with osteoporosis I think. I thought I was paying full price, but I 'only' paid AUD$280. If I fitted the criteria I would only pay about $5 or $40 depending on my income. I have osteopenia, have started AI and am hoping for some preventative effects(mets). So far no SE. Had injection 2 days ago.
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I am in the US and have coverage through my employer (Blue Cross Blue Shield / Express Scripts.) They cover Prolia™ (denosumab) for the treatment of aromatase inhibitor-induced bone loss in women with breast cancer and approved my Prolia prescription no questions asked. I didn't have to go through any prior step therapy, i.e. try any other drugs before getting Prolia. While researching this topic, I found out that if I had to pay out-of-pocket for this drug under my plan, each shot would cost under $1,000.
ChiSandy, I recently came across Amgen's assistance program that might be useful:Amgen Prolia Assistance Program
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Good afternoon- I had more of a delayed reaction this go around with my Prolia shot a few weeks ago. Instead of being achy for a few days after, it came on more like 5 or so days the injection. Thinking maybe because more of it has been in my system and so it tolerates it better, at least to start? This was my fourth shot so will be paying attention next time to be mindful I may see SEs up to a week after my next injection.
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Good morning- had my latest Prolia shot and found the SEs were really minimal this time. The last time, they seemed to come on later, but I am a week out from the shot and only had some achiness the day after. I guess my body has gotten used to this.
Also, my MO said he recommends ONLY five years on the AIs for my particular case so I will be done with them next March (2018). So I expect next January (or maybe the summer) will be my last Prolia shot. We are redoing my bone density again in December of this year.
I had my first almost dental extraction come up and be sure to talk to your dentist in advance of having any dental surgery or removal because of the osteonecrosis of the jaw risk with Prolia. She was well versed in this with other patients who are are bone building drugs (prolia is not the only one that causes this) Fortunately, I only needed some repair to the tooth underneath the crown and had that taken care of and new crown put on. I know this tooth does not have longevity though, and hoping I can keep this in place until I am off the Prolia shots.
Hoping everyone is doing okay on the Prolia shots!
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I've done well with the Prolia shots. My MO said I could only take them for two years, but some of you have posted you're taking for much longer. I wonder why he said only two years.
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Hi All,
I'm new to this thread. I'm starting rads next week followed by Arimidex. I also have to start Prolia due to osteoporosis. I found out my osteopenia progressed to osteoporosis on the same day I was told my mammogram was abnormal. Double whammy! I'm really worried about the side effects of both the Prolia and Arimidex. Any you words of encouragement? What are some things you have done to combat these SEs? I was in a good place until I read about hair thinning (my hair is thin now!) bone loss, etc.
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I'm encouraged by these posts about Prolia. I'm starting rads next week. When that treatment is done, moving on to Arimidex and Prolia. Just diagnosed with osteoporosis and my MO doesn't want to wait on the Prolia injection.
I was doing OK until I started reading about all of the potential SEs associated with these meds.
I feel like I'm on an emotional roller coaster. I have to take this one day at a time or I'm going to drive myself crazy!
Prayers to all!
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Hi Butterfly- welcome to the thread. Sorry you will need to start the Prolia sooner than later, and hoping you won't have too many SEs. I started the Prolia shot about a year and a half after I started the AIs once a bone density test showed I had moved from slight osteopenia towards a steady bone degradation. I pushed for it because my mother had osteoporosis in her 70's and saw her go through a broken hip and later she broke her leg. So I did not want that to be me, and Prolia has really helped to improve my bone health.
The two more common SEs are just the achiness after the shot for a few days. If you are working, I always suggest to anyone doing the shot to do it on a Friday so you have the weekend to deal with that. The literature says you get flu-like symptoms, but I never got a fever or the other aspects of the flu, just the achiness. I have noticed after taking it for a few years now that I usually feel achy and tired the day after, but fine after that. But everyone is different.
The other major thing they worry about is the osteocrenosis. It is an infection of the jaw and they recommend if you know you need major dental work, get it done before or if you find out you need it, they have to stop the shots for awhile. I was facing a possible tooth extraction this year and told my dentist we may need to talk about this. My MO said they would stop the shot around that time for sure if we knew, but all I needed was a new crown. So if you have any major dental work to do, that is really important to do before hand (or talk to your dentist and MO along the way if it comes up).
There are other SEs of course, but these are the two I have had to be mindful of.
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Thank you Jazzygirl for the information. It helps a lot! I'm planning on getting my teeth cleaned and examined as soon as I get the OK from RO. I need to consult with my MO and see if I should take the first Prolia injection and then start Arimidex or start Arimidex first and wait a short time before starting Prolia
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Butterfly- glad it helped and let us know how you are doing once you get going with the shots!
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Well, BCBS Medicare Part B supplement finally came around: they revised the requirements to include BC patients on AIs with osteopenia, regardless of whether caused by the AI. So my second bone treatment was a Prolia shot in March, no questions asked, no SEs, nothing out of pocket. Next one due in Aug.., but they will still wait till Nov. for my next density scan
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Good to know about insurance coverage, Are the Prolia shots manageable?
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Butterfly- what you do mean by manageable? The SEs or the out of pocket cost?
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Jazzygirl - I meant the Prolia shots coupled with Arimidex. I know. I'm very fortunate that I have these these treatments available and I'm encouraged by what is shared on this thread. Off to my first rad this afternoon. Gentle hugs to all.
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Butterfly- oh okay, now I understand. The AIs are a daily pill as you probably know, the Prolia shots are twice a year shots. The AIs to me are the harder thing to manage because there are SEs you may have deal with on a daily basis. For me, weight gain is one thing, stiff joints, and the biggest challenge was pain in my feet. Lack of estrogen dries out your tendons and ligaments. I had to come off arimidex after six months because it was so hard to tolerate, but after a month "vacation" I was fine when I went back on them. Yes, I still have joint stiffness and some stiffness in my feet but have learned to cope. Exercise really helps. There is an arimidex thread you should also join, and the ladies there are helpful.
Be sure your MO and/or PCP keeps tabs on your blood work. Sometimes there can be a change to things like cholesterol and blood sugar with the AIs. My blood sugar spiked six months after I started and we have made some adjustments since. Not everyone has this problem, but some women do.
The Prolia SEs for me have a more short term impact, at least from all I can figure out. As I mentioned in an earlier post, I started them a good 15 months after I began the AIs and was warned of the achiness/flu like symptoms. Beyond that, I don't experience anything else, as far as I can figure out, from the Prolia shot. The SEs from the shot are most noticeable a few days to a week after the shot, the AIs are a daily thing to deal with. I have been able to adjust to everything, and hope you will be able to as well.
I am not sure how you will feel starting them at the same time. Might be a good thing to ask on the arimidex thread to find out of anyone else started the two together?
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Jazzygirl-Thanks a bunch. All useful and helpful information!
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