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Low bone density

Posted , 7 users are following.

kirsty32448
kirsty32448

Hi I am 23years old. I have been diagnosed with osteoporosis. I have been advied to take Bisphosphante. I was wondering what the main side eeftects are? And other tips on how to get my done density up?

1 like, 17 replies

17 Replies

  • kathleen65757
    kathleen65757 kirsty32448

    Posted

    You are 23 with osteoporosis? I did not think that was possible. How was it diagnosed? 

    Do not rush into anything.

    Have you got a specialist looking after you?

    • kirsty32448
      kirsty32448 kathleen65757

      Posted

      I was diagnosed with oestorpinia at the age of 13 and since then i have been getiing a lot worse. My last DEXA scan revleald my bone density is now -3.60 which is oestiophrosis. it is uncoomon in people my age to have it diagnosed so early. I am under queen marys hospital at the moment. Do you get pain in your bones?
    • kathleen65757
      kathleen65757 kirsty32448

      Posted

      No, I do not as such. I take precautions not to fall because if that occurs I am likely to suffer a break. 

      I am very puzzled that they were able to diagnose osteoporosis because usually scans are not even undertaken on young people. Here, in Australia, it is recommended at 70 years of age.

      Did you have unexplained broken bones and that caused them to investigate? How many broken bones have you suffered?

      I see you are under a hospital care which is good.

      Their advice would be more important than ours as we are just lay people who suffer the same condition who have researched and discussed this health issue.

      Your t score is relatively high but some people report over 5 so still not as bad as some but they are not 23 either. They are elderly.

      Hope you have some comfort and support with this as you are really young to be in this situation.

       

    • kirsty32448
      kirsty32448 kathleen65757

      Posted

      Hi Yes as a child growingup would just fall over and fratucre or break a bone so i under went great ormand street hospital where they did a scan which revealed low bone density which has become worse over the years. I am ok with the diagnosis but was just wondering how i am going to cope as i get older.
    • allison72169
      allison72169 kirsty32448

      Posted

      Your situation sounds so difficult. I am sorry you have to contend with it. What have the doctors said as to the reason why your bone density is so low at such a young age? If there is another condition causing it, e.g., a thyroid problem (though that too seems less likely in a young person), that should be addressed as well in order that you can get the best benefit from any medications you might take. Hopefully, more and better treatments and medications will become available in the not-distant future, and given your age, you will have access to them. Those of us who are much older have fewer choices.

       

  • allison72169
    allison72169 kirsty32448

    Posted

    Hi Kirsty, Kathleen is correct that it is highly unusual for someone as young as yourself to be prescribed a bisphosphonate. Is your diagnosis definitely osteoporosis and not osteopenia? If osteopenia, in the U.S. at least, bisphosphonates are now officially advised against; they are considered almost solely for patients with osteoporosis. If you do in fact have osteoporosis at such a young age, then, like kathleen, I think a specialist should be involved in your care, since you have decades of life ahead of you and do not want your future health jeopardized by imprudent medication recommendations.

    To your question about the bisphosphonates, the immediate side effects range from none to quite severe, the latter including esophageal irritation, heartburn, indigestion -- to the point where many people cannot tolerate these meds. However, it is the potential long-term effects that are of greater concern; they include a condition called ONJ (osteonecrosis of the jaw) and atypical fracture of the femur (in other words, a hip fracture that can occur with little to no impact). In the U.S., the Food and Drug Administration is now cautioning doctors that bisphosphonates not be used in most patients for more than a few years, as the reports of very serious adverse effects such as those that I must mentioned are continuing to accumulate, even though doctors prefer to call their incidence "rare."

    The main risk of the bisphosphonates is their almost unparallelled long half-life of ten years or more. This means that they remain in your system for at least a decade, so even if a patient were to cease taking the drug for any reason this wouldn't assure that the side effect would go away.

    I hope you can get other medical opinions so that you can make an informed decision that feels right to you.

     

    • kirsty32448
      kirsty32448 allison72169

      Posted

      Yes my diagnosis is ostephrosis i have a bone desity of -3.60, Do you reccomend anything to try and help strneghten my bones? I currently take calceos tablets twice a day.
  • Mary_D_23339
    Mary_D_23339 kirsty32448

    Posted

    Hi Kirsty

     Sorry to hear about your osteoporosis. To strengthen your bones i would suggest: 

     In addition to brisk walking, weight bearing exercises (but only under initial guidance from a qualified personal trainer). 

     if advised to take additional calcium remember that magnesium helps the bones to absorb the calcium.

    Whilst calcium is essential for good bone health Vitamin K2 is a key factor in regulating calcium in the body. Currently dietary guidelines for vitamin K focus on how much is needed to regulate blood clotting and have largely ignored the much higher amounts needed to maintain healthy bones and arteries.  

    Also ensure you are getting enough vitamin D3

    Good luck! 

     

    Also ensure you are getting enough vitamin D3 

    • kirsty32448
      kirsty32448 Mary_D_23339

      Posted

      Hi thank you for your reply. I am on my feet all day as i look after specail needs chidlrena and am put of a kids fitnness crew team so i do a lot of excericse. I have been sent to go for blood tests aswell to see if i have a vitaim defitiancy. I have not yet told my mum about my bone density dropping to -3.60 as i dont want to worry her. I currently take calceos tablets but they dont seem to have worked. Do you know what the lowest bone density score can be?
  • sue05901
    sue05901 kirsty32448

    Posted

    Which one have you been advised to take? I was put on Alendronic acid - been taking it for 5 weeks - 1 tablet weekly - but having very bad bone pain so doctor has told me to stop for several weeks to see if it improves - apparantly bone and muscle pain is one of the more frequent side effects, but if you google it with the name of yours you will get a list of side effects.

    Let me know what you are going to do. At the moment I am just chewing the vitamin C and D3 tablets I have been given and seeing how I am in a few weeks.

    (I have Arachnoiditis following back surgery in 1986 which is why I am in a lot of pain anyway.  Also fractured my L1 earlier this year sad  )  Hope this is helpful.

     

    • Mary_D_23339
      Mary_D_23339 sue05901

      Posted

      Alendronic Acid medication damaged my throat (despite taking as required)  so taking any tablets is difficult for me.

      When first diagnosed with osteoporosis I was given Calofit D3 as a powder but after discovering it contained the colouring agent  E110 AND sucrose I now take a more natural branded  source of calcium, magnesium with boron, vitamin K2 and vitamin D3 (in a spray) as recommended by my local health shop - owner just happens to be a bio chemist and goodness she knows her vitamins!  This is in addition to six monthly injections of prolia. 

      Although I have no side effects from the prolia I'm not too happy about taking any drug for osteoporosis but with a t score of -5.2 on my back am a bit reluctant to rely on natural medications only.

      Another Dxa scan next week - time will tell whether there''s been any improvement. If not i shall seriously consider going down the "natural route only.

      Doctors will always prescribe AA initially as it is the cheapest medication for osteoporosis. Under pressure they will reconsider other treatment but all the drugs for osteoporosis appear to have some side effects. 

    • sue05901
      sue05901 Mary_D_23339

      Posted

      Hi, I've not heard of Prolia before - the tablets I take are calcium and Vit D3 chewable ones - actually not bad at all.

      That must  be awful to have damaged your throat sad  is there anything they can do on that score?

      My T score is not that bad to yours - av 3.5 through whole spine hips and pelvis, with some areas a bit better and worse.

      Really hoping just managing it without medication will be ok.

      Not sure I want to try anything else after this episode!

      Take care.

    • Mary_D_23339
      Mary_D_23339 sue05901

      Posted

      Prolia is a brand name for denosumab. Not that happy about taking it as, with what appears to be all osteoporisis drugs, there are side effects - but I don't get any! 

      My throat is OK just am unable to swallow any large pills but an occasional G&T slips down a treat!!!

      I try to remain positive and thankful that I am in NO pain whatsoever and now realise why it is known as the "silent disease". 

      I can understand your reluctance to take any medication - I sometimes think those of us with osteoporosis are the guinea pigs for the drug companies.

      Keep smiling everyone!

  • Mary_D_23339
    Mary_D_23339 kirsty32448

    Posted

    From the National Osteoporosis Foundation site

    "Many of us enjoy the taste of a soft drink or soda. Others like the caffeine boost they get from drinking a cup of coffee or a cola. Certain soft drinks and sodas, especially colas, contain phosphorous in the form of phosphoric acid. These drinks may also have caffeine. Some people are concerned that the phosphoric acid and caffeine in soft drinks can harm bone health. Colas may have other chemicals, besides phosphoric acid and caffeine, that can affect the bones. People with osteoporosis should not drink more than five cola drinks a week."

    Just a thought!..................

  • donna04274
    donna04274 kirsty32448

    Posted

    Hi Kirsty

    I am 37 and was diagnosed with osteoporosis a year ago. I was prescribed alendronic acid tablets which I took for six months. I saw the GP a few months ago who advised me to stop them as I was in severe pain most days. I have not yet commenced another bisphosphanate. I am awaiting a follow up DEXA later this year. As others have commented, what works for some, may not help others. Have a chat with your specialist and see what they suggest. Good luck

    • sue05901
      sue05901 donna04274

      Posted

      Hi Donna, like you I have got more severe pain which is so far attributed to the Alendronic acid. Have been advised to stop taking it for the time being to see if there is any improvement, but am very wary of starting anything else.

      I'm not due a repeat scan for 2 years, not sure how quickly you can actually see any improvement to ask for one earlier.....

      As I have severe pain and neurological pain from Arachnoiditis and lumbar disc collapse, its obviously a bit difficult to be 100% certain at this point, but the bone pain has become much more severe in the hips and pelvis where I didn't have so much problem before, so its a wait and see game....

      Will continue with calcium supplements, exercise and see where we go...

      Good luck hope you get good news at your next scan.

    • kirsty32448
      kirsty32448 donna04274

      Posted

      ok i will have a chat i hvae not told my mum yet as i think so will worry to much should i tell her? and i went for a blood test the other day to see what my vitamin d levels are
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