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BISPHOSPHONATES

Posted , 10 users are following.

margaret22251
margaret22251

I have been to my doctors for a check up this morning and she said because it looks as if i might be on long term steroids she wants me to go on Bisphosphonates, has anybody been on these please if so what do they think. I think i read somewhere that they can damage the oesophagus is this correct please.

Also what is osteoncrosis of the jaw please which i have read is a rare side effect of Bisphosphonates

I am doing well at the moment and do not want to start complications unneccessary,(walked everyday on holiday the most i did was 5 miles, pub stops in bewtween of course).

Many thanks Mags

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH margaret22251

    Posted

    First of all - demand an dexascan to see what your bone density is like. I had been on pred for 4 years, much of it at over 10mg, and there was no change in my bone density as measured by dexa. You cannot compare reading from different machines - but both were acceptable to not require any intervention other than taking calcium and vit D despite nearly 4 years of pred in between. Only about half of patients on pred develop osteoporosis so it isn't a given it will happen.

    Bisphosphonates can cause LOSS of bone density in the jaw - paradoxically! It is more common in patients on the high doses used in cancer treatment but many patients complain about loose tooth problems and any major dental work should be done before starting to take them. Many dentists won't do any work on patients taking them.

    Damage to the oesophagus was mainly associated with patients not taking the tablets properly - very strict rules about that, on an empty stomach, with a large glass of plain tap water, remaining upright for 3/4 hour before eating or drinking anything else. Anyone with a history of reflux or other gastric problems shouldn't take them. And you shouldn't take them for more than 5 years whatever happens.

    • margaret22251
      margaret22251 EileenH

      Posted

      Thank you Eileen i had a Dexscan about one month ok, and everything was spot on no problems, i also have silent reflux so will take on board and list all you have said and tell the doc next time i see here, hope you enjoyed China. Regards Mags
    • EileenH
      EileenH margaret22251

      Posted

      If it was OK why does she suggest AA? Repeat in 2 years - that's when you make a decision.
    • bebe82419
      bebe82419 EileenH

      Posted

      Hi Eileen, I've been taking 35mg Risedronate Sodium for over a year now. I tried the AA and I suffered from a swollen oesophagus and this stuff is no better, I dread eating out with friends and every meal has become a struggle. I've had a bad cold and didn't take any meds for two weeks and today, for the first time in over a year, I was able to eat normally. Do you know if there are any alternatives to these to meds.?

      Thanks Bebe

    • Juno-Irl-Dub
      Juno-Irl-Dub bebe82419

      Posted

      HI Bebe, have you told your doctor about your ongoing stomach problems with Risedronate? Because it seems to me that you have suffered for long enough? Yes, there ARE alternative drugs that bypass the stomach and are given in injection form. But first, how serious is your OP? I presume it was diagnosed with a Dexa scan??  (What is your T-score?). Are you already taking steroids as treatment for PMR or is it just OP that is your problem?  

      Regards, J

    • bebe82419
      bebe82419 Juno-Irl-Dub

      Posted

      Hi Juno. Thanks for your reply. I'm not sure what my T score is but I will be asking whe I visit nest week. I had a scan, which was when I was dianosed (is that a dexa scan?) I can eat mince or chilli but normal meals are out of the question, 'normal' food seems to adhere to my esophagus, food like eggs, steak, bread, tomatoes, just wont go down and if I drink liquid to try and budge it, the whole lot comes back up.

       

    • EileenH
      EileenH bebe82419

      Posted

      Then as Juno says - you tell your doctor that it isn't any better and you want the next step up.

      Yes there are other medications, some are given as injections and some have totally different mechanisms from the bisphosphonates so you don't get the gastric problems. Which, by the way, can lead to serious problems in the long term. In the UK though you are supposed to work your way through the list from cheapest to most expensive (not unreasonably) but as soon as one causes problems you don't mess about it.

      But as Juno also says - do you REALLY need them? Have you had a dexascan? Did it shown a poor bone density - and that doesn't mean osteopenia, it means one that is heading for osteopososis. Not everyone develops osteoporosis with pred and calcium and vit D are enough for many patients. I and several others on the forums have never taken AA or anything else - and our bone density is fine.

    • bebe82419
      bebe82419 EileenH

      Posted

      Thank you for your help. I'm going to stay of the meds. until I see my Doc. next week, but just being off them for 10days now, has made me feel almost normal today. I could actually eat a butter roll with my soup. Hoorah!
  • julian.
    julian. margaret22251

    Posted

    I'm impressed. Though if the pubs were closer together it may have been 6 miles. smile  I only manage 8 km but there are no pubs .... sad

    I think Alendronic Acid may be a bisphosphonate. I suspect I'd be wondering what my bone density is

  • LisaCACO
    LisaCACO margaret22251

    Posted

    my doc has suggested I take bisphosphonates via IV instead to avoid the gastrointestinal issues. The one she suggested is given once a year.

    do get a bone density scan if you don't have one yet.

  • karren61208
    karren61208 margaret22251

    Posted

    Margaret

    I can speak from experience about taking tablet and injection osteoporosis drugs as well as developing an ostenecrotic spot in my jaw.

    What Eileen says here in this thread is spot on. You should get a dexa scan now for a baseline and next year get another to see if there is a change that would indicate need for medication. These drugs should not be prescribed casually.

    Osteonecrosis is dying bone. It causes pain. Yes it is rare in patients without cancer like me. The response I got from the medical professionals I saw was appalling. I wrote about this in recent threads here. The bottom line is it took me 4 dental doctors before I got treatment and the rheumatologist I was seeing didn't want to hear from me.

    Now that I'm in this forum, I realize how naive I was about who I allowed to treat me for osteoporosis.

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