Zoledronic Acid advice

Posted , 5 users are following.

I'm a 37 year old male with Coeliac, osteoporosis, vit D & folic acid deficiency, I had a T5 compression fracture Jan 2016 because I have suffered with anxiety & depression since January due to the events and life adjustments/mobility my question is, would this scenario fit the rheumatologist's view that things are serious enough to warrant an immediate need to start a once yearly Zoledronic IV ?

: T-Scores spine -3.7. Hip -2.7

Any advice welcome for or against

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  • Posted

    Was it a spontaneous fracture Paul or due to trauma?I can understand your anxiety and depression i too had compression fracture in May (t7),i am much older though so have been thrown on the scrap heap,you at your age should be offered all the possible help available and you should'nt be afraid to ask for it.

    • Posted

      Hi Diane

      It was a low trauma falling from standing height

  • Posted

    Hello, I'm not medically trained but I would say yes it does seem to be warranted. You're very young to have osteoporosis and now that you know you have Celiac and hopefully are going to be absorbing better on a gluten-free diet you have time to build your bones with nutrition and exercise but your osteoporosis is Advanced and the medication can help to slow down any bone loss over time. I'm assuming that they think your fractures are due to the osteoporosis. How about if you get a second opinion by another doctor or a naturopathic doctor to see if another viewpoint could lead you to a clear decision. Good luck to you. Also I read about Recent research into use of 3 milligrams of melatonin which yielded about 50% effectiveness of medications like Fosamax. Your doctors may not know of this given the research is a recent only within the last 4 years but if you Google it on Google Scholar or talk to a rheumatologist that has reviewed the research maybe they could educate you more.

    • Posted

      This is certainly something I shall research in the interim, thank you
  • Posted

    Hello, I'm not medically trained but I would say yes it does seem to be warranted. You're very young to have osteoporosis and now that you know you have Celiac and hopefully are going to be absorbing better on a gluten-free diet you have time to build your bones with nutrition and exercise but your osteoporosis is Advanced and the medication can help to slow down any bone loss over time. I'm assuming that they think your fractures are due to the osteoporosis. How about if you get a second opinion by another doctor or a naturopathic doctor to see if another viewpoint could lead you to a clear decision. Good luck to you. Also I read about Recent research into use of 3 milligrams of melatonin which yielded about 50% effectiveness of medications like Fosamax. Your doctors may not know of this given the research is a recent only within the last 4 years but if you Google it on Google Scholar or talk to a rheumatologist that has reviewed the research maybe they could educate you more.

  • Posted

    Yes, you are young to have this diagnosis.  Is it believed that your celiac disease is the culprit for bone thinning?  The underlying cause needs to be dealt with before any heavy duty drugs are administered, especially as you may have more than fifty years ahead of you and they can wreak a lot of havoc in that time.  My physiotherapist told me that sometimes the muscles along either side of the spine can get so tight, hard "like bricks" that they can cause vertebral fractures.  If you are stressed and worried this could be a real risk factor for you.

    Please read up on the OP meds before committing to any of them.   You also need to know that the figures for "osteopenia" and osteoporosis were fairly arbitrarily set by the WHO some years ago.  These figures have been a boon to the pedlars of drugs. Some other things to think about - these did not exist as diseases in the past.  All humans lose bone density as they age, although I grant that you are young for this effect to have occurred.  We can help maintain and even improve our bone density through appropriate exercise and diet.  Supplements like calcium, D3, K2 (look up K2, not easy to get in modern diet but essential for proper calcium metabolism) magnesium and a few other things are important for bone health.  Weightbearing exercise is essential, can be as simple as a daily walk.  I guess your diet must be fairly strict, but please don't consume too much processed food and eliminate added sugar and sodas, diet or otherwise, from your life.

    The major cause of fracture is falling, so the most effective thing to do is to learn how to maintain muscle strength and improve balance.  Exercise like tai chi is super for that.  None of the bone meds will give you stronger bones, although they may improve density reading on the machine.   

    • Posted

      These points on diet are very clear, something I have made a start on researching (new member of osteoporosis natural remidies) so I'm keen to do all I can in this respect, because of the strict gluten free diet and in order to play it safe I now cook from scratch with all meals so processed food is avoided, although this has been difficult as my dentist/GP insisted I have the four wisdom teeth removed early last week via general anaesthetic so now on a soft/liquid diet due to complications in jaw damage, which they were actually trying to avoid in performing this preventative treatment! But that's another thread intirely I fear.

      It is believed the Coeliac is the root cause of osteoporosis as I have significant stomach (vili) damage

    • Posted

      Oh you have been through the mill, haven't you.  Let's hope things turn around for the better now.  Was your celiac disease undiagnosed for a while, hence the stomach damage?  Will that get better with time?  I know the cells of the gut turn over faster than any other organ, so healing can also take place rapidly - far more rapidly than the bones!  Also getting a handle on the nutritional deficiencies should help improve your general health.  I hope you find the answers you need, and feel better very soon.  ?🌞

  • Posted

    Thank you for all of you're responses, having performed some research weighted the pro's & Con's I have decided along with having two rhumatolagist advice (one being a second opinion) to go ahead with the infusion this coming Wednesday. 

    Im worried of course but believe there's a risk greater in not having it.

     

    • Posted

      Along with the medication, please take heed of the advice we non-users have given to work towards improving bone health.  It will help your overall health and can do no harm to your bones.  Good Luck!  🍀

    • Posted

      Thank you, you're input is greatly appreciated and yes this is my plan also, I'm now planning my grocery shops around nutrients, gluten free and oily fish 😬

  • Posted

    Oh my good god.....had the infusion yesterday at 2pm fine all night and then this morning chest pain across the top every time my lungs get to around half capacity and then at 4pm today my thigh bones became painful.

    Let's hope it's short lived 🙏🏻

  • Posted

    Well the feared happened, I need support somebody with midical experiance to advise

    I have today been diagnosed with ONJ osteonicrosis of the jaw, on 14th september i had IV zoledronic acid whereby I informed them I had just had preventitive wisdom teeth extractions (x3) on August 25th on the day of the rhumatology stating that I was to have IV zoledronic acid I still had severe swelling and bruising of the jaw and the meds were administered 3 weeks later

    my question is all the data and studies etc point to ONJ can develope several years after IV zoledronic acid >4 years so how can it happen 4 weeks after and how would I go about reporting to someone as I cannot see any cases so close to administration????

    any help welcome, I am gutted because I thought I was doing the right thing for bone recovery

    • Posted

      I am so sorry you've got this diagnosis.  It does seem as though the zolendronic acid treatment is probably not the main cause of the ONJ, but I wonder if it was the trigger.  If you were really vulnerable, having the IV less than a month after major dental surgery was probably bad judgement on the part of the doctor.  

      Where do you live?  Every country should have a way to report medical mistakes or serious side effects.

    • Posted

      I'm in the UK, I've reported it to the pharma responsible.

      I'm going to raise a complaint with the treating authority tomorrow after I have asked my GP some questions, I cannot believe my luck after such terrible health in 10 months,

      I'm not sure what else could cause ONJ prior to the extractions as I have near perfect teeth, no fillings and to my knowledge conscious oral hygiene!

    • Posted

      Your description of the long time it seemed your mouth was taking to heal after the dental surgery makes me wonder whether the zolendronic acid was a final insult to the jaw which you might well have weathered had the infusion not gone ahead until you were in better health.  I have read that the jaw bone has the fastest turnover of bone, which is why it is so vulnerable, but by the same token it could also have improved quickly, if only the dental procedure had been allowed to heal properly.  Of course that would have taken some time, removing wisdom teeth leaves holes where they were which no way could have even started to fill in within those few weeks.  What happens next, what can they do for you?  I assume there will be no more infusions for now.  I did read that ONJ can happen within a year if there have been dental issues.  Weeks seems odd and really raises the question whether your medical team was paying proper attention to your condition.❤
    • Posted

      The points you make are very valid although it was only three weeks from extraction to infusion so there was no time to think there was a long time to heal, in fact when I went for a standard dental check-up last week when I started getting jaw pain she stayed at that time that the sockets were healing fast and well, it's all very confusing.

      The only plan pre plan information I have is wait and return to maxillofacial in 4 weeks in which time he wants to liaise with my rheumatology and assess if there is any spreading before he makes a treatment plan.

      Yes he has stated hold all osteoporosis treatment

      With regards to the medical team paying proper attention, I don't think they were given the heavily documented advice from the MHRA and prescribing guidlines being that 3 wisdom teeth is a highly invasive procedure on the upper risk scale of "avoid dental extractions"

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