Boniva Injectable $$$

[k9ophile]

I saw my doctor and it was decided that I should go back on Boniva, the injectable to accommodate my DS malabsorption issues. They said they would go directly to Tricare Express Scripts. (TES) TES is usually prompt to notify me when they receive a new Rx. After two weeks, I called my doctor's office to see if they had heard anything because I did get a notice about TES needing more information. They assured me that they had sent it and would re-send as necessary.

Today I got a letter regarding a maintenance drug with the dire news that I would have to switch my Synthroid to mail order. (It is after a long back-and-forth for medical necessity for brand name rather than generic. I was needing a refill and we decided to wait until my appointment on 9/14 to see if my dose would be changed. They drew the blood ad called me the next day to say it needed to be changed from 75 to 88. I was going out of town the 19th and knew it wouldn't get here by then so I asked for a 30 day to be called into my local pharmacy, and contact TES about the new dosage by mail order. Thus the reason for the letter. Apparently, when a local pharmacy fills a drug listed on the TES formulary as maintenance, the above referenced letter was generated. I call TES and found out that the letter was about the local 30 day supply and the automatic response.

Okey-doeky! "While I have you on the phone..." I asked about my Boniva and yes, my doctor had called it in on 9/14. It seems that Boniva is not covered in any form at all, so getting a letter of medical necessity for an injectable rather than tablets became a moot subject.

On-line research has found I can get it at my local pharmacy for $168.00 per dose. It's administered every three months. Fortunately, I am in a financial position to pay that. I'm just not sure I want to. I was on it before with no adverse effects so I'm not taking risk into account along with not being concerned about the price. I'm wondering if the little bit of improvement to be seen in my osteoporosis is worth it. I feel sure I'd know when to cut my losses and run if I was on chemo for a worsening cancer. ("It's OK, doc, just give me the pain medicines. I'll start planning my funeral.")

I will get a second opinion about going ahead. In the meantime, I would appreciate any words of wisdom from y'all. Scientific and anecdotal responses are equally desired. I've learned so much about nutrition, I'm positive there will be knowledge to be gained from everyone who has had to deal with bone health.

 

[southernlady]

Does Tricare cover ANY of the injectables? Or is it just Boniva? Also check under the generic name.

 

[k9ophile]

I didn't ask about other drugs since the doc and I talked about Boniva. I'm going to have to come up with another plan or suck it up and pay. "Chuck", the friendly pharmacy guy, said that even the generic wasn't paid for. I'm not opposed to another drug, just have to find out what injectables are out there. We had previously discussed Reclast when I had my very first appointment. It may be an option now that Boniva is off the table.

 

[southernlady]

I didn't ask about other drugs since the doc and I talked about Boniva. I'm going to have to come up with another plan or suck it up and pay. "Chuck", the friendly pharmacy guy, said that even the generic wasn't paid for. I'm not opposed to another drug, just have to find out what injectables are out there. We had previously discussed Reclast when I had my very first appointment. It may be an option now that Boniva is off the table.

Do you have a copy of your formulary? Also Reclast was not covered under my prescription coverage (formulary) but my part b of Medicare since it requires infusions. I don't know the ends and outs of Tricare though, just Medicare and they aren't the same beast.

 

[k9ophile]

Looking up the formulary is on my list before I get a second opinion. I appreciate your input.

(Yeah, they're both federal programs. But if there was uniformity and cohesiveness that would probably bring the government to a screeching halt.)

 

[KathrynK]

I was prescribed another IV osteoporosis drug, denosumab, (Prolia) but I never took it. I was getting dental work and the dentist said it interfered with bone healing, so I should wait until the implants were healed. That didn’t make sense. If I had a tiny wrist fracture that I didn’t want to get bigger, I’d want something that didn’t interfere with bone healing. The only reason I was taking it was to promote bone stabilization from my osteopenia. The oral bisphosphonates ( Fosomax, Zometa, etc) are not an option for me after DS because of the stomach symptoms. According to guidelines about GI effects in people with normal stomachs “In trials, perforations, ulcerations, and bleeding events occurred with all of the bisphosphonates except zoledronic acid.” (Reclast)

You might make the argument to the insurance companies that the oral bisphosphonates are not an option because of your partial gastrectomy. Boniva doesn’t seem to be the best drug, though, but it is IV. This is from the guidelines: “evidence is insufficient to determine whether one bisphosphonate is superior to another, with the exception that ibandronate (Boniva) did not reduce nonvertebral fractures in a relatively large trial.” That means not hip fractures or wrist/femur fractures (but it works for spinal fractures.)

I’m still doing dental work, but I don’t think I’ll take one when I am done. The fracture results seem to be less than the advertising would suggest. Since I don’t yet have osteoporosis, I am not convinced they are worth the side effects at my stage of disease and age. This is a good discussion to have with your doc, because there are a lot of individual factors involved. I sure wouldn’t pay that price, but that’s me.

These are the guidelines docs are supposed to use for fracture prevention. They advocate bisphosphonates, but point out the information is limited for some fractures and the side effects are a problem. Bone loss accelerates if you stop taking them. The IV drugs have the advantage that you don’t have to take them every day. Reclast can cause serious kidney failure.
My philosophy is that it’s best not to interfere with Mother Nature with pharmaceuticals whenever possible (although I did do it with the DS). So, vitamin D and vitamin K2 in high doses are my choices. I do not feel this is the answer for everyone, and I know I am taking a risk, but that’s my choice. Talk with your doc in depth and make your own decision. Good luck with it!
http://annals.org/aim/article/26253...oporosis-prevent-fractures-men-women-clinical

 

[k9ophile]

Thank you @KathrynK . The Boniva and Forteo I've taken has slowed my bone loss. My mom had severe osteoporosis. She was standing up after using the toilet when she suffered a spontaneous femoral fracture. That made her crash into the sink and she ended up with punctured lungs from the rib fractures. I certainly don't want that to happen, yet I'm not entirely convinced to keep on trying to treat it.

I have been thinking about upping my vitamin D and K2. This is exactly why this forum is so useful as I first read about that strategy here. I see my PCP 10/19 and I plan to discuss this with him. He is extremely judicious when prescribing drugs. He's an advocate of functional and integrative medicine. He's the one who actually understands the DS anatomy and the needs we have. He wasn't too happy when he initially heard how much vitamin D, but has come around after seeing my labs.

One thing I am certain of is that this is not a decision that has to be made immediately. I have time to research options and get second opinions.

 

[southernlady]

Reclast was my option. It has stopped my bone loss. I have done two rounds. One was 2014, second was 2016.

Based on my Medicare EOB, I'm allowed one DEXA scan every other year unless medically necessary, and my PCP is not willing to have it done yearly.

I have osteoporosis, even with exceptional D and PTH (was 20 in Sept 2017). Mine has too many genetic factors.

 

[k9ophile]

My genetic factors are figuring into my decision as to what to do next. My Toenail Fungus* doctor has a Dexa scanner in his office. I signed a ABN for the one I got earlier. His charge is $170, but his nurse told me I can pay only half when I get my denial statement from Medicare.

*The doctor who actually knows something about DS anatomy and our needs does not accept Medicare and I see him only for DS related labs and advice. For every thing else, I see the PCP I had pre-DS. Fortunately, neither has a big ego and completely respect me seeing one for nutrition and another for more usual thing non-DS related. Like toe nail fungus.