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Zelendronic Acid infusion...anyone tried this?

Posted , 5 users are following.

linda17563
linda17563

I have been advised to have this once yearly infusion....because I react to medication (all biophosphnates!)  i would be grateful for anyone who has had this infusion...all meds have side affects, so not sure about this.  I am osteopenia....so they say, but can`t seem to get the results of dexa scan!...Thanks for any info regarding this...

0 likes, 17 replies

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  • kathleen65757
    kathleen65757 linda17563

    Posted

    No, I have not heard of that!

    I have decided to try natural for a start. 

    I am taking vitamin D, calcium, magnesium and vitamin K in cheese and yoghurt.

    Exercise is also supposed to help.

    Osteopenia means your t score is not bad, less than -2.5.

    I am in Austrslia and am 70 years old.

     

  • alison28608
    alison28608 linda17563

    Posted

    Hi Linda. I am surprised you have been offered this for ostiopenia. I thought it was used for people with Pagets disease. I would have thought it might be worth asking if you really need to take anything more than calcium and Vit D at this stage. Ask the professionals.
    • linda17563
      linda17563 alison28608

      Posted

      I  have asked the "professionals" but the rheumy wouldn`t tell me the reading of my dexa scan, because I want to make the decision myself, regarding the reading.  I have been on steroids 3 years, which weakens the bones...but I suffer dreadful side affects from meds, and don`t want this drug unless I have to!  I take Adcal daily, have dairy foods/sunlight so I`m in a quandary.  I am going in a weeks time to see my doctor to discuss this, and wanted other opinions before I go... I cannot exercise because I have Fibro and Polymyalgia...Thank You.
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      Hi Alison (you're back!!), Zeledronic Acid (Aclasta) is used in large infusions for people recovering from cancer, Pagets disease, and then in lower doses for treating OP. It's most useful here for those who have bad stomach problems from oral bisphosphonates as it's use obviously bypasses the stomach. It also has to be accompanied by calcium and vit D. . . . . .The most common side-effect is 'flu-like symptoms' for apx. a week after the first infusion, which doesn't seem to happen after that. It is infused once a year. It has the same very rare risk of ONJ and atypical fracture as the other bisphosphonates and has been shown to significantly reduce fracture recurrence. . . 

      Hope you're well.   J

    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      Hi there. Yes Im back after a good topping up of the Vit D. Im ok thanks. I have only heard of this infusion in association with Pagets disease. Still taking my AA and so far, so good. Good to read of your improvement. 11% is great. Hope next time I am tested I will be heading in the right direction too. I personally, am more concerened about the calcichew. They are so sweet!!! Anyone know of a zero sugar version? Or would that just be chalk?
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      Hi Alison, re. the calcichew - are you allergic to dairy foods?   If not, just try and get your calcium from them. It's also better for you this way. I only take Calcichew as a supplement  if I haven't got my full 1,200 mg from diet for that day. I may take one, on occasion, or even a half . . . . And yes, I agree, they are really sweet and you must chew them. Yuck.   J
  • alison28608
    alison28608 linda17563

    Posted

    If you have ostiopenia your level is lower than the osteoperosis starting level of -2.5. I am with you on the " dont take anything you dont need" but, I cant understand why they wont give you your levels. Its your body and for you to make an informed decision, you need to know this. Good luck
    • linda17563
      linda17563 alison28608

      Posted

      Thank you Alison, I will ask the direct question (I`m at the age now to do that!) how did you arrive at the decision that I`m osteopenia, because of what result from the dexa scan??  I don`t know why I keep getting fobbed off, when I want to know the reading...it`s my body for goodness sake!   Have taken note of that reading thank you ,and have looked on other sites/forums....will keep you posted after I`ve been....I know many people can`t or don`t want to take the dreadful biophosphonates!....
    • alison28608
      alison28608 linda17563

      Posted

      In your first msg you said "they say you have osteopenia". I was a nurse, but have no expertise in this field, but guidelines in general, say a reading of-2.5 or lower, is a diagnosis of osteoporosis. I am -3.6 or -3.5 depending on the area measured, so, much of a muchness. I take AA and want to sleep for most of the day I take it, but I am getting better. On a lighter note, I have suffered from cronic constipation for years and since starting the AA, I dont have this problem. May be considence, but Im delighted.
    • linda17563
      linda17563 alison28608

      Posted

      My rheumy said "you are osteopenia" so I want you to have an annual infusion, I replied, what are my readings...she ignored me, so I said I`ll think about it...she replied, ring me within a week with your decision, I don`t want you returning here with Osteoporosis!  rang doctor`s with request for the reading from them....they had never recieved them from dexa department!...I chased it up....rang doc again, a locum rang me and said once again, you are osteopenia, asked again what are the readings....she replied, that`s strange, I can`t find them!....but have it here you are osteopenia...can`t post on here what I said under my breath.....frustration isn` t the word, but I`m not giving up until I see my lovely regular doctor and get the readings!  AA gave me dreadful chest pain, I have tried daily/weekly/ and monthly (the very worst!)  feel like I`m having a heart attack when taking them...Thanks again for the readings, WHEN I get mine I`ll compare!
    • alison28608
      alison28608 linda17563

      Posted

      I certainly would not be taking AA if I did not have the readings I have. In your shoes, I would not consider it and I am surprised you were prescribed it. This is only my personal opinion though. Get your readings at the next apointment, and if they have lost them, ask for a repeat scan
  • carol32225
    carol32225 linda17563

    Posted

    Hello Linda

    I am also surprised that this drug has been suggested to you if your bones are 'osteopenic' rather than osteoporotic . Osteopenia covers a wide range of density and you really need to know what your test results are, I have always insisted on a copy of my scans and not just the figures and you have every right to ask for these. I was offered zolendronic acid last year but chose not to have it on account of the possibility (albeit slight) of 2 very serious conditions - ONJ - osteoporosis of the jaw and spontaneous femur fractures both of which are associated with all biphosphonates but especially the heavy dose infusions.

    May I suggest that you phone the NOS helpline if you haven't already done so - they are very helpful. I also joined the NOF online discussion site some months ago - which is huge and has members from all round the world. There are very interesting topics on drugs, nutrition and exercise etc and a couple of specialists in the field who have kindly given up their time to respond to queries.

    GOOD LUCK!

    • linda17563
      linda17563 carol32225

      Posted

      Thank you for that, I do like to be armed with info to make my own decisions, but don`t think the powers that be, like patients like me.  At the end of the day, it`s me that has contend with the after affects, and I feel so ill sometimes from the problems I have already, so don`t want to add to them...once again, thank you.
  • carol32225
    carol32225 linda17563

    Posted

    Ps. Typo - ONJ - osteonecrosis of the jaw not osteoporosis of the jaw. (Dentists are often wary of performing any sort of invasive dental treatment on people taking this sort of drug on account of healing and infection problems)
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