Need Advice re taking Boniva again

[lilita]

Took Boniva for 2 years and condition worsened to spine dexa -5.3 and hip -3.5. Prescribed Tymlos but $700./month was excessive. Now MD wants me on Boniva again, despite initial severe worsening. Advice?

[Met00]

I've just checked and, for those in the UK, Boniva is Ibandronate here and Tymlos doesn't appear to be available here but is similar to teraparatide. That's a horrid position to be in, where you have to pay for your medication. We're so fortunate that we have our NHS. Many of us get free prescriptions, but those who do contribute to prescription costs pay just over £9 an item monthly, a fraction of what you have to pay. I'm not totally clear what you mean about your t-scores, as you say -5.3 and -3.5 for your hip. Do you have your current and previous hip and spine scores?

[lilita in reply to Met00]

Thanks for replying. Bone density DXA scores are: Hip -3.5 and spine -5.3. Tymlos, first approved in UK is abaoloparatide.

[Met00 in reply to lilita]

I've double-checked, but abaloparatide isn't approved for use in the UK or the EU. It was rejected in 2018 on safety concerns, together with lack of evidence that it can prevent non-spinal fractures! (gmjournal.co.uk/under-devel...; ema.europa.eu/en/medicines/.... Do you know what your previous hip and spine scores were? Have they changed very much? That's a very marked difference ("discordance") between them, which can suggest a possible error in measurement. There's a good paper on discordance here (click on the link to the Word document): osteoscanuk.com/academic-re...

[lilita in reply to Met00]

Thanks againMet00. I read the article describing the abaloparatide. I also checked my records and found I was diagnosed with Hyperparathyroidism in 2016 but the score is now in the normal range...

And I have reviewed my Dexa scan t-scores:

2016 2018 2020

Spine -4.8 -5.4 -5.3

Hip -3.0 -3.1 -3.5

Fem -2.9 -3.2 -3.4

(sorry for lack of alignment)

I took ibandronate (Boniva) for two years, 2016--2018. I have taken nothing after two months of abaloparatide in 2019.

From 2016 to 2018, spine density statistically significantly LOWER by -11.8%

I will be permitted another bone density scan next year.

Meanwhile, GP wants me to start Boniva again. Am extremely reluctant to do so, based on past experience.

Any additional info or suggestions will be appreciated.

[Met00 in reply to lilita]

If you were diagnosed with hyperparathyroidism and that hasn't been treated, I'm not surprised that medication hasn't made any difference, and it would probably also explain your poor scores. I would ask for investigations into your hyperparathyroidism before considering any further osteoporosis medication. I don't know much about hyperparathyroidism, but I wasn't aware that it could go away on its own. Raised parathyroid hormone can result in calcium being retained in your blood rather than going to your bones, hence loss of bone density. It also frequently prevents osteoporosis medication from working. As Heron has explained in one of her posts, it is also possible to have hyperparathyroidism without raised parathyroid levels, so if they were raised initially, not treated, then found to be in the normal range, this definitely needs further investigation.

[HeronNS]

Have you been checked for "secondary causes" of osteoporosis. This website lists a number of conditions which can contribute. One relatively common one, for example, is hyperparathyroidism, listed on this page under medical conditions....

osteoporosis.ca/about-the-d...

There are a number of reasons why osteoporosis drugs might not work at all, and hyperparathyroidism is one of them. When treated it is possible for bone density to start to recover to some extent, even without medication.

Certainly it seems absurd to prescribe a medication which does not seem to have helped you.

Is there any reason why you were not prescribed alendronate or risedronate?

And please add Vitamin K2 to whatever other bone-healthy supplements you may be taking.

[lilita in reply to HeronNS]

yes, i am diagnosed with hyperparathyroidism but lab results showed parathyroid hormone in the normal range (!?!?) No idea why neither alendronate nor risedronate were prescribed, but, as i mentioned, i think Boniva was the go-to for medicare patients as a first treatment for osteoporosis. btw i was 65 at the time and am now 71. thank you for your suggestions and information...i will follow up on the K2 .

[HeronNS in reply to lilita]

Although your situation is much more serious than mine ever was you may still get some ideas from my (now a bit dated when it comes to the links) story:

healthunlocked.com/pmrgcauk...

[lilita in reply to HeronNS]

thank you! shall read it .

[HeronNS in reply to lilita]

I believe it's the blood calcium level which one needs to be concerned about. You could have normal hormone level and still have high blood calcium.

"Although MOST people with hyperparathyroidism have the classic presentation of high calcium in the blood and high parathyroid hormone (PTH) in the blood, about 20% of people with very significant parathyroid disease will have high calcium and normal PTH levels. This is very important... it was discussed in the table above, but we are doing it here again because most of these patients are not being diagnosed correctly." from:

parathyroid.com/diagnosis.h...

[lilita]

I believe it was, five years ago, the go-to first medicine to try for medicare patients.

[HeronNS]

By the way, I note that in your first post you were being offered teriparatide. Did you ever take that?

[lilita in reply to HeronNS]

Rejected teriparatide, because it requires refrigeration and my husband and I travel quite a bit which would make refrigeration difficult to maintain. That is why MD suggested abaloparatide...

[Sunseaandsand in reply to lilita]

I had a 2 year course of treatment with Forsteo.

We travelled extensively whilst on the treatment, it did not have any negative effective on travel.

I was able to travel for a maximum of 20 hrs without any problems whatsoever.

As I now understand the rules have been relaxed allowing some time without refrigeration.

This allows even more time for travel.

For more clarification you can contact the manufacturer.

[lilita in reply to Sunseaandsand]

thank you for this!!! i shall definitely check it out.

[lilita]

thanks again. I have only t-scores, as i just posted above. I am a 71 year-old female.

[lilita]

test results only show t scores. using online examples, i converted hip -3.1 to z = -1.1 . could not find standard BMD for spine, which is the troublesome score (-5.4).

[Morris225]

I was on Boniva for 10 years, with a 11 month Holliday so 9 years and 1 month. Had no idea it was for the spine only, as my hip is bad to. Dr. never said anything about that. Just the benefits out weigh the risks. It didn’t increase my bone density or make it worse. I went off Boniva when I had a tooth extraction. I decided not to go back on it. Instead I went the natural way, calcium rich foods, vegetables, almond milk, exercise, I did this for 9 months had a dexi scan done, the last one was a year ago. I was very shocked, my numbers were a lot worse. I was diagnosed with primary hyperparathyroidism in 2019, scheduled for surgery but I canceled when my second opinion said I did not have this disease. My calcium level is now in the normal range , where it was years ago 9.2 but my endocrinologist said my calcium is fine no need to do a PTH. I’m scheduled for my Prolia injection next week, very nervous about that, not sure what to do since my numbers are worse. I have to do something, don’t want a fracture or broken bone.

[lilita in reply to Morris225]

Best of luck with your Prolia. I am trying to get a consultation with an endocrinologist or a rheumatologist to sort things out.