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Results of DEXA scan :(

Posted , 9 users are following.

LisaCACO
LisaCACO

well, not so good. turns out I do have osteoporosis and rheumatologist has recommended Fosamax (alendronate sodium) 70mg once a week. Now I've heard "lovely" things about this drug and would love to hear what you all have to say. Please share. I'm esp concerned since I already have real problems with reflux and my esophagus (neuropathy). I'm still on my liquid diet and trying to eat solid foods. This, 6 months into prednisone. adding this sounds like a rip roaringly bad idea, but hey, what do I know?  

love to hear what you all think.

2 likes, 19 replies

19 Replies

  • christine_fay
    christine_fay LisaCACO

    Posted

    How old are you?

    i wonder if it were not for us being on Prednisolone, how many would have gone on with osteoporosis that had not been noticed by Dexa scans?

    mine showed mild osteopenia... But the specialist stated that this was quite normal and to be expected at 71 and in an area of an old injury. When I had to have a tooth extracted a couple of months back it had to be cut from my jawbone. Dentist panicked ... She said she had never come across bone so hard!

    thank goodness you don't take that allendronic acid stuff she stated !

    i was told I needed no treatment after the Dexa but my doctor insists I take this once a week. I took it twice and felt so ill I can't even go near the stuff... It makes me vomit immediately and I will not subject myself to such a drug  when it has taken so long to calm down my stomach problems with as much ingenious. thought as I can muster. Being threatened by a GP who just hands out drugs willy nily just to cover 'possibilities' is ridiculous. I think this obsession of osteoporosis by my GP is totally overriding his judgement and understanding of everything I am suffering with PMR in fact it's almost as if he does not recognise that as a condition at all. However when a dentist who has just sawn a tooth root out says you have the hardest bone of anyone... Of any age they have ever come across that is proof enough for me..... Guess what doctor said....... Keep taking the acid!  What a waste of money.....

    • LisaCACO
      LisaCACO christine_fay

      Posted

      I'm 53. 

      btw, I also have factor V leiden, which puts me at higher risk for osteonecrosis. Also means I can't take Evista because it triggers clots.

      I just spent the weekend with severe reflux sad. still fighting it.

      This really is the last thing I wanted to hear right now, which is, of course, why my doc sent the cheery email wink.  Going thru a rough taper ing. 

  • Dave-California
    Dave-California LisaCACO

    Posted

    Hi Lisa

    I have been dianosed with PMR for over 16 months and started at 20 mg prednisone - now tapered to 4 mg. My rheumatologist strongly recommended (actually required) that I also immediatley commence taking Fosamax (alendronate sodium) 70mg once a week with the prednisone. And I have been taking it with absolutely no reactions either at the once a week time I take the single pill or the long term reaction over 16 months. My rheumatologist indicated that long term corticosteroid use typically increaes the osteoporosis risk and even if it is not at the critical, measurable level, bone loss is likely and Fosamax definately slows bone loss. Apparently many of the bone loss tests that are used do not show the slight reductions of bone loss and if the tests are not followed up regularly (which most doctors do not after a primary positve result), the very low bone loss can start to increase overall potential with age and become unknowingly serious. So I figured - why take a chance - take the Fosamax because I have no idea how long I'll be on corticosteroids and I don't want my 'skeleton' breaking apart.

    Anyway - that's my info after quite a long Fosamax ingestion period. 

    Best,

    David

    • LisaCACO
      LisaCACO Dave-California

      Posted

      thanks for your story, david.  I do worry about the future. I mean, if I'm this way now at 53 (and I've been taking calcium/magnesium) then who knows what I'll look like in a year or two, let alone ten. 

      Guess this means I can't rollerskate any more sad. 

    • allie42357
      allie42357 LisaCACO

      Posted

      I know how you feel Lisa - I'm 47 with -2.4 T-score and have known this since March.  I feel especially sore and stiff coming into winter.  I do feel very worried about the future and unclear on take the drugs or don't.  Still I'm getting a good picture on here and its helping to make my mind up.
  • Dinah54
    Dinah54 LisaCACO

    Posted

    My first Dexa scan after a couple of months on prednisolone showed mild osteoporosis in the spine and osteopenia elsewhere. My rheumatologist wanted me to take alendronic acid but I refused. Two years - and one broken wrist, eek! - later another Dexa scan showed further deterioration. Reluctantly I have said I will take the Alendronic Acid - though am waiting till I've stabilised on methotrexate. Lots of people take it without problems and necrosis of the jaw is very rare. But as you already have digestive problems maybe the injections would be a better idea for you?
  • lodgerUK_NE
    lodgerUK_NE LisaCACO

    Posted

    I would visit the National Osteoporosis site and read up on all the medications available.

    Also, if you type Osteoporosis in the box head Search thousands of discussison on this page it will take you, on this site, to all the discussions on Osteporosis and the medications.

  • Susanne_M_UK
    Susanne_M_UK LisaCACO

    Posted

    I take 70mg of Alendronic Acid weekly. Have done so for about 6 months. So far, no problems. I'm sure you will be told this, but if you do end up taking it, remember to stay upright for at least 30-45 minutes, so that it stays in your stomach and doesn't enter the oesophagus.
  • LisaCACO
    LisaCACO

    Posted

    Anyone take Forteo (Teriparatide)?
    • Juno-Irl-Dub
      Juno-Irl-Dub LisaCACO

      Posted

      Hi Lisa, I took Forteo from Dec. '13 to Dec. '14 for significant osteoporosis  (OP) in my spine. It's generally recommended for severe OP, for those who are not tolerant of other meds. or for those who, despite being on other meds., have still fractured. It's self-administered by daily injection using a pen like diabetics use and it's surprisingly easy to do. I had no major side-effects - mainly tiredness - but I was also on Pred. for PMR - so don't know which (or all ) of these was resonsible for that.. Some people find that they get a little dizzy after giving yourself the injection and so you should sit down while doing it. . . It is recommended that Forteo should be used for no more than 2 years to protect against any serious side-effects - my Rheumatologist prescribed it for only one year and to have another year in hand should it be needed. When I finished the year of Forteo I was prescribed Actonel and the aim is to continue this for a few years. I am having a Dexa scan next month to check if the bones have improved after the 18 months of treatment. Eileen is spot-on saying that if you have stomach/reflux problems it is a known counterindication to taking Fosamax or any similiar meds. So your doc. must have been on automatic pilot when mentioning this one - it's the most common one prescribed. . Did he or someone else mention Forteo also as a possibility???  Anyway, keep in touch esp. if you need to know more about Forteo . . .   Kind regards, J
  • EileenH
    EileenH LisaCACO

    Posted

    If you already have reflux and other gastric problems then pretty much any oral bisphosphonate is absolutely contraindicated - and your rheumatologist should have known that. It says it quite clearly in the data sheet. The other substance you must not have with your history of blood clots is strontium ranelate. 

    There are a series of drugs which help avoid osteoporosis - although most of them only stop the bone being broken down as fast while allowing it to be rebuilt (bone is a living substance and is constantly being resorbed and remade) but generally just stop it getting worse, they don't always increase bone density.

    Forteo however is different. It is an artificial version of a hormone your body makes all the time - parathyroid hormone - and it will actively build bone so reversing the osteoporosis. One of its side effects is stated to be heartburn - so do discuss it in detail with your doctors. Another option is denosumab or Prolia - it doesn't mention heartburn as a side effect (but there are others like muscle pain...). With all of them you MUST have your vit D and calcium levels monitored and kept in the acceptable range.

    Don't panic - even being osteoporitic in places doesn't mean that you will crumble in a heap! 

  • gentian
    gentian LisaCACO

    Posted

    Lisa,

    Alendronate proved impossible for me.  I did v occasionallyy get reflux like a burning in the top end of the gullet. Used to munch Rennies and if that didnt work a mouthful of milk, especially creamy milk, would work.m 

    On alendronate youre warned to stay vertical for half an hour after swallowing the tablet - DONT lie down or bend down to pick something up,  and wash the tablet down with a full glass of water - so no  crumbs linger in your  throat or return back there I suppose?

    Not enough for me to obey that.  After only 2 days I had repeated goes of reflux/ indigestion almost impossible to shift with what had worked before.  I had to leave a public event I'd looked forward to, in order to hunt down a glass of milk.  

    I gave up the alendronate and was prescribed something else.

    thats just my experience, and maybe you will find differently.  Good luck 

    • LisaCACO
      LisaCACO gentian

      Posted

      thanks for your story, gentian. what were you prescribed after alendronate? did it work for you?
    • gentian
      gentian LisaCACO

      Posted

      Ive had no problems over the last month on  Adcal-D3 tablets 750mg,  I take one each morning and evening (I still observe the "stay upright" rule scrupulously, not even sure if I need to !)  but they seem to work for me and are supplemented by an injection every 6 months.  My first of those caused no bother.

      Box says theAdcal-D3  tabs. are   Calcium carbonate with added vitamin D3 and the leaflet goes on to say they are not suitable for everyone - as you would expect .

      Others here have advised alendronate may be wrong for you.  Im sure you can get something better for you.  Best wishes

    • EileenH
      EileenH gentian

      Posted

      Remember to leave about 2 or 3 hours between your pred and your calcium tablet - they interfere with each other so need to be taken separately.
    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Hi Eileen, does the 2-3 hour advice also apply to calcium-containing foods (eg. yoghurt ) ?  J
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      It does if it is large amounts of calcium you are talking about - i.e large milky coffees, cereal with loads of milk and a yoghurt as well for breakfast  for example. And if you add in a calcium tablet too - that is an awful lot of calcium. You should not take both calcium tablets together either for the same reason - a lot of calcium which the body is unable to take up all at the same time. Spreading it over the day is better.

      The calcium tablets are a lot of calcium in one place so in what I would regard as normal dietary amounts it is probably OK and many ladies have used a yoghurt to avoid stomach problems when taking pred.

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Thanks for that Eileen. I am taking a yogurt since I've decended to the 1mg. uncoated Preds. (adding up to 4.5) and it's working well so far.  I try to avoid the Calcium tablets and to get the calcium from diet, and get vit.D from vit D drops instead. . . . but it's nice to throw in a couple of calcium tabs. on occasions -  and not to  have to worry about computing calcium amounts for each food for the day . ..  J
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      Yes - know what you mean. The dietician I saw 3 years ago (pred weight and cholesterol problems) sat there and said cut this, cut that blah blah and I went home and did as she said. So when she looked at my food diary a few weeks later - oh dear, there was like NO calcium as I was to cut dairy, especially cheese. Relief lit up her face when I reminded her I was taking calcium supplements...
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