BONIVA is awful - what now?

greenfrog
greenfrog Member Posts: 269
edited June 2014 in Bone Health and Bone Loss

I am 46 and have been taking monthly Boniva for 6 months now. I had hoped that the side effects would subside a bit but in fact, the longer I take this drug, the more the SEs have intensified.

Awful flu like symptoms, killer fatigue and woozyness, persistent rash on neck, strange sore patches on my face. This thing makes me feel truly terrible and it doesn't wear off in a hurry either. Apparently it has a half life of 6.5 days and it takes 32 days for it to totally clear the system.

I didn't have a great time with Alendronic Acid either (which is why the doctor put me onto Boniva). I am very concerned about bone loss because osteoporosis runs in our family. My beloved grandmother died from pneumonia resulting from a fractured spine so the whole issue is not something I take lightly.

Apart from the fact that I am on Arimidex I also had an oopherectomy - which ups the ante with osteoporosis. I already have one osteoporotic verterbra and some patches of osteopaenia - so I am reluctant to give up on bisphosphonates altogether. But having had a difficult time with both alendronic acid and Boniva I wonder if I am ever going to be able to tolerate bisphosphonates whilst maintaining a decent quality of life.

Has anyone else been in a similar position?

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Comments

  • cp418
    cp418 Member Posts: 7,079
    edited August 2011

    What about Zometa infusions twice per year?  I cannot take oral osteo medications due to GI issues and heartburn.  I was placed on Zometa when my Dexa scan showed osteopenia after taking Femara 20 months plus ooph.  I am finally getting back to normal range in recent Dexa scan.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited August 2011

    greenfrog -- what about the weekly doses instead? Maybe those monthly doses are just too powerful for you.

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited August 2011

    There is also the newer Xgeva shot.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2011

    greenfrog - My Ob/Gyn gave me Atelvia. It is a new drug that helps with osteoporosis which I was recently DX with. I also take 1200 mg of calcium and Vitamin D3. I had no idea Boniva had so many side effects and it is so expensive too. My dr also told me to walk 30-60 minutes a day or get some form of exercise which I do. Have to do more but working on it. I was DX with osteopena in 2000 and started taking calcium then and eating more foods with calcium but gotta admit wasnt as diligent as I should have been. No one wants to get osteoporosis. My mother in law has it and it is brutal. She has this horrible hump on her back and the constant risk of bone fractures. Boniva is not the only drug that can reverse osteoporosis. As I said the drug I am taking which is once a week does the same thing. You have way too many SEs to continue taking it. Also Arimidex can attack the bones and sucks up the calcium you take in so they have to be really proactive about offsetting the calcium loss. When one drug doesnt work there are always others. Good luck...let us know. Diane  PS guess it works for Sally Field

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  • Kathy044
    Kathy044 Member Posts: 433
    edited August 2011

    greenfrog - as you are in the UK you might like to consider Didronel (etidronate disodium) a slightly different and older member in the bisphosphate family. I'm in Canada and this is what I am taking as I cannot swallow pills whole which leaves me few other options under our provincial health insurance for a first line therapy. You only need to take a daily pill of the drug for 14 days every three months and a provided tablet of calcium for the 76 days remaining. 

    http://www.netdoctor.co.uk/medicines/100000766.html

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  • greenfrog
    greenfrog Member Posts: 269
    edited August 2011

    Thank you all very much for your replies. I am going to try daily ibadronate for a while and see if the "little and often" theory works for me. I had not heard of Didronel Kathy - I shall mention it to my GP. I admit I am anxious about the jaw necrosis risk with Zometa and other IV bisphosphonates but the idea of getting it all out of the way in a couple of doses a year is very appealing. There are plenty of options thankfully - there must be one that suits me better than Boniva.

    Thanks all once again.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited August 2011

    greenfrog, although the jaw necrosis thing needs to be considered, there's some evidence that this was seen in people whose health was already compromised by chemo and other issues, and that for a pretty healthy person the necrosis was probably not an issue.

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  • Linda54
    Linda54 Member Posts: 2,689
    edited September 2011

    I am so glad I found this topic on our bones. 

    I was just dx with osteo. I fall into the high risk catagory and I had been doing all the right things to keep my bones strong. I decided to have a bone density test and was shocked at the news. I did a 24hour urine collection test and it showed high calcium levels. My parathyroid was fine so my doc dx me with hypercalciuria. 5-10% of healthy individuals have this and it is probably on a genetic basis. I get health checks every year so how did this get undiagnosed?????....Doctor told me it is only dx through a 24-hr urine test and that test is not done during a regular physical...only when something else has been dx....well dang.  Makes me think women should get bone density test well before the recommended 65 yr old guidelines...

    The National Osteo Foundation recommends bone density testing:

    For women 65 or older........for post-menopausal women under age 65 with one or more risk factors for osteo.......if you are post-menopausal and you are not on HRT.......you are older than 50 and experienced a broken bone

    I fall into 2 of these so I should have had a bone density at age 53....5 years ago!!!.....maybe this condition I have with my kidneys would have been caught early before my bones got so bad.

    I will note that I did not have chemo or have not taken any of the cancer meds.

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  • Linda54
    Linda54 Member Posts: 2,689
    edited September 2011

    My doctor put me on a diuretic for the hypercalciuria and gave me a sample of Boniva. I took the boniva last Tuesday morning and by 8pm I started having chills and symptoms of a virus. I had a rough night and have felt bad for several days. I will not take another pill next month.

    I have been doing research on the natural trace mineral strontium. It has been proven to slow bone loss and increases bone density. Europe is already using it in a perscription formula for osteo with positive results but not approved in the US....This non-toxic trace mineral is available on-line in supplement form. strontium citrate

    There is a alternative out there!!.....do your research....doctors won't tell us anything....we have to learn on our own...just like with our breast cancer and reconstruction

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