Zoledronate or Raloxifene

Hi All

I was diagnosed with osteoporosis of the lumbar spine in 2015 and am now under a lot of pressure to start on medication to prevent fractures (I have managed to get away with no treatment accept calcium/vitamin D supplements thus far).

The two treatments being considered are Zoledronate (intravenous) or Raloxifene. Any thoughts on which one I should go for please? I really do not want to take either.

Thank you

Mistydawn

17 Replies

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  • How serious is your osteoporosis? And have you had any fractures? Can't help with advice about the two meds, although looking them up on the internet I can understand your reluctance to take either. But, then, it turned out I didn't have osteoporosis after all, my doctor had misunderstood the summary she got (which didn't include t-scores). Nevertheless I had already started behaving as though I had OP, and, refusing all drugs, I started taking extra supplements, especially Vitamin K2, and doing lots of appropriate exercise. Improved my t-score in one year from -2 to -1.6 and drugs are no longer recommended. :)

    Why don't you give this number a call. It was messaged to me thus:

    "Sometimes the best course of action is to encourage people to call us on 0808 800 0045 (freephone) to talk about their medical issues."

    I assume it's the Osteoporosis Foundation or whatever it's called - sorry, don't live in UK so not sure of its name.

  • Mistydawn

    Call the helplines at NOS and have a chat with a nurse. Do let us know what you decide. :)

  • Hi

    It is the case that eventually many of us have to take meds. If I were you and I hadn't fractured I would and am seriously considering taking the SERMS, ralaxofene, it helps by supporting both the osteoblasts and osteoclasts and also reduces the chances of breast cancer. Unlike the bisphosonates such as Zoldronic acid you don't have to stop it, but it's not as powerful so is more useful for patients who have not fractured

  • After 4 spinal fractures, I was put on Alendronate, and then Risedronate, but had problems with them both. My rheumy nurse then tried me with Zolendronate. I had the first one in December 2016. The infusion took around an hour, and I have had no ill effects. My calcium and vitamin D levels are good, and I don't need another infusion until June 2018.

    Hope this helps you make your decision. Sorry, but I have had no experience of Raloxifene. Sending best wishes.xxx

  • I was on Raloxifene / Evista for 2 to 3 years. Side effects to start with were not too bad with the hot flushes, I'd been there done that a few years previously. But then came the horrendous mainly calf cramps mainly in the night. I've never known cramp as bad as these were. They could start anytime when in bed but if I dared stretch, it would be instant. There was barely time to get out of bed to try and walk them off and massage my calf. Next day my calf was sore and bruised feeling. Later my hand started to become painful, had difficulty using it. Then the day came when I could no turn the tap on, my whole hand and arm ached , couldn't wear my rings and that's the day, I stopped taking Evista. But still the calf cramps went on for months, a year at least after I had stopped taking it. This may not happen with you. I have a very sensitive system and other painful conditions. One positive thing was that on my follow up Dexa scan, my rating had improved. Sorry can't remember the details. I also had bad side effects with 3 other Osteoporosis drugs, one of which was Alendronic acid.

  • I'm so sorry to hear of your experience Rosepetal60.

    It's so difficult with any drug as we never know the consequences of taking them.

  • Thank you Mistydawn. I wish I had stopped it sooner. I did stop the Alendronic Acid after 2 doses, but even that was 1 dose too much. I forgot to mention, I don't take any drugs for Osteoporosis these days just the vitD/ Calcium tablet.

  • How does your consultant feel about you not being on any medication for osteoporosis Pormsgalore60?

  • Mistydawn, do you mean poemsgalore1? I am on medication for Osteoporosis, Adcal D3 and Zolendronic Acid.

  • No, I meant Rosepetal60. Sorry

  • i felt he understood I was sensitive to the four Osteoporosis drugs I had already tried and so knowing there was no antidote to a new drug I was being offered (and refused ) called Densobub which is known for causing aching joints, he appreciated i did not want to risk having the injection as at the time of my appointment with him I was wearing and needed to wear two wrist splints because of remains of the Evista drug and the Alendronic Acid side effects. I have to say, I felt he really understood my situation with these drugs. I'm glad I don't have to take any. I often forget I have Osteoporosis as I have had chronic pain to cope with from a misdiagnosed operation 20 years ago. But I am careful when walking or going downstairs. Everyone is different. I know someone who had no problems with Alendronic Acid for some years and yet I had problems with the first dose.

  • Denosumab? Brand name Prolia.

  • Probably, I'm sure you are right. It is some years ago when I was offered it,

  • I was being offered Prolia (tongue in cheek) but then told I could not take two biological at the same time. I was on Abatacept for my Rheumatoid Arthritis which my consultant wants me to restart.

  • Really feel for you Rosepetal60. Thank you for your feedback. Take care x

  • :-)

  • Not going to comment on any of the drugs here, nor whether people should or should not take them. However in case any of you haven't read my comments on other threads (I know Kaarina and Poemsgalore1 have ;) ) I really advise anyone with bone thinning of any degree, whether it's called osteopenia, low bone mass, or osteoporosis, to make sure you're eating the best foods for bone health, taking supplements if needed (we almost all need D3 and Vitamin K2) and get as much appropriate exercise as you can manage. None of the bone meds can be taken indefinitely so getting started on the healthy regime gives you a leg up, so to speak, while the bone meds are doing their best for you, so that maybe you won't need to later on switch to another kind.

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