Prolia Shots for Increasing Osteopenia
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As usual - all drug prices are CRAZY. It never makes any sense. My doc billed Medicare $1700 for my last Prolia shot (that's original medicare). I do have osteoporosis caused by chemo but my numbers are definitely getting better. And they billed $55.00 for the act of the nurse injecting the drug.
Jazzy - are you & your friend both in Albuquerque? I wonder if it's a regional/local thing? Or what kind of contract the provider has? Or if it's different because mine was caused by chemo? i don't take ALs since I'm hormone negative. Or because my OB/Gyn gives the shot instead of the MO? Just weird!!!
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MinusTwo- yes, we both are here in ABQ. I am not totally sure about Medicare, but I know that private insurance has the ability to negotiate rates for services and drugs and what they will pay. They will contract with different providers and for certain drugs (you are probably familiar with the formularies and tiers of payment many have). I don't believe the government programs have had this same ability (difference between private insurance and government programs).
There was some information in the news this week about trying to lower drug prices, but think I heard Medicare was exempt. I found this legislation piece on line that late last year, they were trying to get something through on this. I believe this may be the "why" between the pricing.
I think different practice groups may tack on fees for the nurse time, etc. My MO's office was trying to get me to sign up for some new special program with Prolia to get it paid for. I told them "but it is being paid for by my insurance." I work in healthcare consulting and very familiar with the reimbursement models. By doing the special program, they get better reimbursement. I told them I would use my insurance before I do any special programs.
https://www.sanders.senate.gov/newsroom/press-rele...
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And interestingly enough, I read in the morning's paper that our supreme leader is not going to allow Medicare or Medicaid to negotiate for better prices. Sigh
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Encouraging news re:Prolia. I’m due for my third injection next month.
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MinusTwo- Supreme leader, lol. But read the same thing with the news this week about the federal push to get pharma to lower the drug prices. Makes no sense given private industry already does this, and most private carriers tend to follow what Medicare does (pr in this case, won't have to do).
My friend also mentioned that her first shot last year was like $2000 and it went way up this year for the second one to the $5700, so perhaps the provider billing jacked it up knowing changes might be coming with the proposed legislation last fall (which obviously won't get passed now). I know several on these threads who have had problems getting Prolia approved through Medicare. It is a crazy racket for sure.
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I get my Prolia under pharmacy coverage, not medical. They mail me a self-injectable syringe and I inject it myself. My MO doesn't mind nor does my insurance company.
I have a private insurance plan through my employer with 1.5K deductible. They cover Prolia 100% - not sure why, maybe because it is considered 'preventive'? Under my plan preventive medications are covered 100%.
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Muska - that's great news. Glad to hear it.
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Oh and I only pay a $50 co-pay to the MO's office for my shot. It is covered 100% by my current insurance too.
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I have been taking an AI (first Arimidex and now Letrazole) for7 years and have seen declining bone density over that time, although not yet at osteoporosis diagnosis. My oncologist has recommended Prolia and I’ve been reluctant. Admittedly, I’m more than a little cynical about pharmaceutical companies and the often oversold benefits of the drugs the companies are touting (and making gobs of money on), and yet I don’t want to be foolish about forgoing a medication that could be beneficial!
I asked at my last appointment about the idea of discontinuing Letrazole as an alternative to staying on it for 3 more years and adding Prolia, but doc said if I was his family member, he’d encourage staying on the AI because of reduction of risk of recurrence, as well as trying Prolia.
While everyone needs to make the best decision for their particular situation, I’d love to hear how and why others decided for or against Prolia
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lhintz- I was diagnosed in 2012 with bilateral bc, and had the oncotype dx genetic test on both tumors to look at my reoccurrence risk. I was 12 for the DCIS (low risk) and 23 for my IDC (intermediate). My doctors did not think I needed chemo, but did say that given I was ER positive for both tumors, I should do 5 years on the AIs. At the time, some of the new recommendations for 10 years were just coming out. As we approached the five years, my MO said I only really needed to do the five years as my cancer was considered the Luminal A subtype. He said based on my cancer type, I could stay with the 5 years vs 10. Of course, the longer you are on it, the worse for your bone health.
I was slightly osteopenic coming in to BC and my bone health deteriorated rapidly on anastrazole (later moved to aromisin). I started Prolia about 18 months after starting the AIs and found the side effects to be very minimal. I have done it for about 3.5 years and it has helped to stabilize things. You feel a bit achy and flu like a day or so after the shot, but that was it for me. My MO would administer it at the time of my six month check ups for the time I was having them. Because my mother had osteoporosis and had a broken hip and leg later in life, I have seen where this stuff can go and did not want to end up with anything fracturing.
My MO said I should do the Prolia shot through this past July (I came off the AIs in February), but I am not sure I will continue going forward. I noticed the cost for my shot has changed since I came off the AIs and am currently working to determine on what changed as it had been covered 100% until this past January. The CNP I saw the last check up said I should stay on it long term, but that was never the plan. I am going to talk to my PCP about this in a few weeks when I see her for my fuller health check up, as she is up on bone health issues. Most women see their bone health improve after coming off the drugs. I may ask her about doing another bone density test again end of this year, even if I have to pay for it out of pocket to see if things are better, worse, the same, etc. It would give me better info before my next MO apt in January when the next shot would be due. I don't want to take an expensive drug I no longer need.
In the end, my considerations were:
1) family history of osteoporosis
2) MO's recommendations for AI duration based on type of cancer
2) rapid decrease of bone health on the AIs after 18 months
3) ensuring it would be approved/paid for by insurance
4) benefit vs. risk of not doing the drug (i.e., increased risk of full osteoporosis and bone fractures)
5) experience with side effectsI hope this help, let me know if you have any questions?
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Thanks so much, Jazzygirl. I appreciate your insight!
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I have absolutely no symptoms after Prolia shots. I just had my 4th. My next DEXA Scan isMarch
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My Oncologist doesn't do any blood work. Is that normal? It's been 3 1/2 years since I was diagnosed and she doesn't do any blood work. I do blood work with my general practitioner but don't you think that my Oncologist should take care of that?
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dpako - my MO only had blood work done to see how the Tamoxifen was affecting the rest of my organs. That’s it. I had a blood profile done by my gynecologist.
I think it just depends on what your oncologist believes is necessary. I would ask her why she doesn’t. My MO also didn’t believe in doing tumor marker tests because of too many false positives.
Diane
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both of my oncologists in two different systems run blood work every time I visited for my 3 month visit. Now I have to every month because of meds. My primary doctor is in the same group and sees all my reports so she doesn't ever order labs
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My GYN gives me the Prolia shots every 6 months, but she will not do that without specific blood work each time - including Calcium and Vit D. I've started getting my PCP to write the orders for all my blood tests - even the cancer antigen tests. I have 8 or 10 things tested every 6 months. She's happy to write the orders and can forward the results to my MO and my Gyn and my Orthopedist or whoever. It's difficult for me to find someone to draw blood from my foot since I have LE. I'm at the 3rd or 4th largest medical center in the US and can actually only go to the blood donor center in one of the 5 major hospitals. No one else will do a foot draw. Therefore it's really easier to have one set of orders instead of 3 or 4 different docs.
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Hi there- I reached my five years this year and moved from six month visits to once a year as of this year. My MO still gives me the Prolia shot (although I am getting an updated bone density soon to see if I need it anymore being 10 months off the AIs now). I will have my next blood work in January before I see my MO. They still want to follow me for the longer term for any latent reoccurrence (which my type of cancer, luminal A, is known for). He watches my liver enzymes and other indicators like CA.
From what I understand from other sisters her on BCO, it can really vary as to how people are followed (or not) or given blood work. I have a friend who goes to a hospital in Boston and they are known for not doing blood work with their follow ups. She had a more advanced type of cancer and always thought it was odd but questioned that. We don't do that here? Another woman who did chemo and BMX but refused AIs is not followed at all. It really seems to be all over the place with what these docs do after treatment.
That being said, I would ask. Should I be getting blood work with my follow ups? If yes, what will you be testing for/looking at? If no, why no blood work? I think the answer you get will tell you if you should change MOs. I also get blood work from my PCP at least once a year, if not more. They are all part of the same system so they have it in my record.
Good luck getting some answers on this!
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Jazzy - my last DEXA scan shows my bones have improved into the osteopenia zone. But from what I understand, if you stop Prolia, all the benefit will revert back to osteoporosis. In other words the Prolia does not make a permanent change in bone growth or loss without continuing treatment. It may be different for you if you can pinpoint the cause to Als alone and you stopped taking that. I'll be interested to to hear an update after you have your scan.
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MinusTwo- I have heard similar things. I heard people who had normal bone health and it came back after coming off the AIs, but not sure if they were doing any bone building drugs.
We have a family history of osteoporosis and I was slightly osteopenic going in to bc but it got a lot worse after my hysterectomy and then going on the drugs. I was heading into osteoporosis. It kept it from getting worse but it has never come back up to being where we started even on Prolia.
So I may be on Prolia forever.....
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Hi everyone,
I am 71 years old now and my gynecologist says I don't need a pap smear at this age. I haven't had one in 4 years. My internist asked me if I had it and I said no so he says is she giving up on you? My gynecologist said the reason she doesn't do it is because there is a lot of false positive at this age so why go through the craziness. So what are your thoughts?
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I saw my MO on November 29th and asked her about blood work. She said my internist does it so why duplicate it. But I go go my internist once a year and I see her twice a year. But I forgot to ask her if I need to get blood work from him twice a year? I think I may e-mail her and ask her. Also, she said she only does blood work for metastatic patients. What are your thoughts?
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Dpako- I think there is a change in protocol for paps. I had a full abdominal hysterectomy the same year I got diagnosed with bc and thus, no need for me anymore, but the doctors have also said they are focusing a lot more on younger women who are sexually active (and some may have multiple partners). My guess is you are okay here. Yearly paps are becoming a way of the past for many older folks.
I am not stage IV and have blood work done annually by my MO. Other people don't get blood work at all with their MO. All I know from my MO is that he said there are certain indicators in the blood like elevated CA that can indicate bone mets or liver enzymes that can be a sign there is a liver issue. That is what he looks for from what I have been told.
I was watched very closely for a couple years after dx and treatment, then it tapered off and now I see the BS once a year and my MO once a year. I have been told my type of cancer Luminal A has a history of late reoccurrence (10-20 years later) so my MO will always follow me.
If your PCP is doing blood work, that is good. The panels usually have a lot of the indicators. My MO does not do biomarkers for cancer.
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Thanks Jazzygirl. I am taking anastrozole and all of a sudden I developed pain on my left hip when I get up or when walk. I wonder if that's joint pain. I put some Ben Gay on it and I will see. But no blood work really bothers me. I may change my MO. I see her twice a year.
I like to hike and walk a lot and if it continues to feel that way I will not be able to do the things I love. I had that before but only when I got up in the morning when I first took Anastrozole now it's constant when I walk but not when I lay down or sit. So maybe I sprained something because I do lift weights. Any thoughts?
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My GYN will not give my Prolia shot with testing Calcium & Vit D - every time. So I get blood done every 6 months. Because of LE, I have to have blood drawn from my foot - and it is a major production to find someone who will do this. I've ended up w/the head doc at a Blood Donor center at a major hospital so I just go ahead and have the full battery of blood tests every 6 months. To make things easier, I now have my PCP write the orders for all the tests for 3 or 4 docs, including the cancer antigen. The MO would be content with tests once a year now that I'm 4 years past active treatment.
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Dpako- unfortunately, the AIs make our joints stiff. I had to give some things up for awhile and/or change my exercise. Hiking was out for me during my AI years, I have been swimming and doing yoga mostly since treatment. I came off the drugs in Feb of this year but still finding my way back. My joints still have a bit of stiffness, but I do walk a lot more now.
I recommend anything that is easy on your joints. It bummed me out I had to give up some things but if you can replace the hiking with something you like, it won't feel as bad. Cancer, the gift that keeps on giving.....
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Jazzygirl, I had the joint pain when I first started about 3 years ago but then it disappeared. I have been lifting weights and working out a lot I think I overdid it this weekend. So this started Saturday and I am hoping it will disappear. I am using Bengay will see how that goes. What did you do for the joint pain? I love to walk for miles it really bums me out. If it doesn't go away I may go to doctor and see what she says.
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Dpacko- pretty much did the swimming, weight and yoga to help. I found that exercising did help the stiffness. I had more of that than actual pain although my feet were really bad for awhile. I would ask your doctor too, there may be some supplements that can help.
I took hyaluronic acid supplements in the beginning when the stiffness was the worst. My MO said it was okay, no estrogen like concerns with that drug but you should check with your MO too?
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Wow, all the side effects/medications to counter side effects/giving up activities are why I refused an AI and Prolia. I'm almost 69 and didn't want to waste a good chunk of my 70s dealing with nasty side effects. I already have arthritis, particularly bothersome in my knees and feet, and I have osteoporosis in my right hip. I was surprised because my Mom had the bones of a 35-year-old in her mid-90s. It would have been nice to inherit that, but I was overweight and a smoker for decades, which didn't do me any favors. The Prolia complication is that I need a molar removed and replaced in the somewhat near future, but I might be allergic to metal, and can't get an implant until I know for sure - but nobody will authorize an allergy test! It's the last molar in that quadrant, so it's not like I can do without. And, I can't take Prolia until I'm certified by a dentist that I won't need major work while on it. Lousy situation all around. Luckily, when I told my MO last week, she agreed with me on all counts and sent in a prescription for Tamoxifin instead of an AI, and told me that instead of Prolia, I could take one of the other bone-strengthening medications, but I could wait a few months to get used to the Tamoxifin first. Whew. Now I'm glad I had a hysterectomy ten years ago, so the worst SE from Tamoxifin isn't relevant. The actual cancer and removal was the easiest part. Going through other treatments and medication is the hard part!
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Alice- there are several women I have talked to here who are 70 or above that have chosen not to do the AIs. I agree with you about treatment (I had lumpectomy and rads) being the easier part. Living with the SEs of the AIs for 5 years was the hardest part for me. The first year was really awful, but we took a break, changed things up along the way and I got through it. I have been off them almost 10 months now and feel better all the time. I got diagnosed at 52 and with my type of cancer, my MO said 5 years only. Some women are on it for 10, some forever because of their cancer type.
I go for my updated bone density test next week and will see if anything has improved off the drugs in almost a year. Fingers crossed. I am still scheduled for the Prolia in January.
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Thanks Jazzygirl for your input. I made an appointment with my MO for Thursday because I think it may be metastasis to bone. I am a neurotic. But when I first started taking the Anastrozole it hurt only when I got up but not all day. Now it hurts when I walk but not when I sit or sleep. It's like sore and stiffness. So who knows what it is. I am hoping it will go away but I feel I need to check it out.
I am neurotic because my cancer went into the nodes 3 nodes were involved and they took them out and radiated that whole area rather than take out all the nodes. I remember I was going to go for a second opinion but I didn't because they said today they don't take out all nodes anymore they radiate the whole area. I hope I did the right thing.
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