Are injections safe and proven beneficial?

Posted , 7 users are following.

I have been diagnosed with severe osteoporosis following a DEXA scan. I cannot get on with alendronic or other tablets and have been advised to have 6 monthly injections.  I am concerned about any side effects these may cause and also whether they have been sufficiently tested long enough to show what outcome they may have. Can anyone advise please.

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  • Posted

    I was advised against having them when I was worried about taking AA mainly because you have no control for six months.

    Firstly, I would find out my t score because severe osteoporosis would,have to be more than -5 as I have -4.3 at the base of the spine and I do not call that severe. 

    My GP is the first to admit she does not know everything as no GP can, not even a specialist knows everything!

    I would hesitate and research and ask other people their experiences.

    I take none of the drugs because I do not trust them.

    The decision is yours and yours alone but you need to be sure and well informed. So pause and take time to know what is best for you.

  • Posted

    Also, others have said that the local pharmacist is your best source of knowledge of Meds which should be the case but I found that source lacking too! One gave me misinformation about how to take one of the biphosphonates saying it could be taken any time of the day which, of course, is false. It must be taken early before breakfast and you must be upright. I urge you to do your own research and check anything you are told.
  • Posted

    Prolia, if that is the drug you've been prescribed, has been on the market only since 2010, so there are insufficient data on its long-term use. Though the idea of a second opinion is very sound, I would be surprised if any mainstream medical practitioner would tell you that you don't "need" a drug if you have severe osteoporosis, as doctors are generally enthralled by these drugs.

    The major concern about all of the osteoporosis drugs is their exceedingly long half-life -- they can remain in the body for up to ten years. So side-effects are not necessarily reversible. There are two potentially catastrophic side-effects to all of the osteo drugs (excluding Forteo, which has its own set of warnings): atypical femoral fracture, whereby the "new" bone, which may be denser but more brittle than the "old" bone, fractures with little-to-no impact; and osteonecrosis of the jaw (ONJ), whereby tissues in the mouth fail to heal after dental procedures. The medical establishment claims these complications are "rare"; however, data continue to accumulate as longer-term results become available for the many thousands who used to be put on the drugs by their doctors indiscriminately even though they only had osteopenia (which is pre-osteoporosis and doesn't necessarily develop into osteoporosis). My own opinion is that the dismissive label of "rare" isn't going to have credibility much longer.

    That said, severe osteoporosis is worrisome as well. I can appreciate the difficulty of the decision you're facing, as even with what is probably classified as mild or at most moderate osteoporosis (for spine, not hip [so far]) I've felt very stressed by my decision to not take these drugs due to pressure to do so from a number of doctors. It goes against the grain to *do nothing*. I know that posters have tried natural methods such as exercise and dietary changes, and some believe that this has helped. In my view, there's really no way of knowing whether alternative approaches do much of anything. In fact, there's no way of knowing if the drugs work either, as all that can be measured are changes in bone density yet increased bone density does not necessarily prevent fracture from a fall. (Most people who fracture a bone do not even have osteoporosis.) Possibly the drugs exert a protective effect from low-impact fractures .. that is, fractures that would not have ordinarily occurred, as they happen in the absence of trauma. (But I'm just speculating about that.)

    I believe it's extremely important that you know exactly what you've been prescribed -- you do not mention the name of the drug in your post -- so that you can research it yourself and raise any questions or concerns with the doctors. Make sure you know what red flags to be aware of if you do proceed with the injections so that you can get any problems addressed and go off the meds as soon as possible, should the need arise.

    Best of luck with your decision.

    • Posted

      As always Allison, I enjoyed reading your response. I was interested in the term, 'severe,' because it is subject to individual interpretation. My result was not classified that seriously yet some may consider mine to be so.

      My oral surgeon advised against prolia because he has had to operate on people who have had their jaw 'die!' And not an insignificant few either! He volunteers overseas as well as operating here in Australia.

      My fear is swallowing fosamax and damaging my oesophageas.

      There is a new drug in the pipeline so here's hoping!

    • Posted

      Thank you Allison - you have covered all my fears most succinctly re jaw , femur etc and unknown long term results.  My doctor said the result was severe osteoporosis ( I have had osteoporosis for many years)  - no t score but he did mention the chance of a broken spine or thigh was one in 4.  I have garnered a lot of information from everyone. Namely healthy living which I adhere to and taking as much  exercise as I am able and a lot more investigation of course.  I really want to fight this myself and regret that so many people are having to have the same problems where there really seems to be no firm independant advice.      Best wishes to you - and useful to learn about K2 helping absorption of calcium.
    • Posted

      Hi Valerie. Like you, I had a healthy life style, but still have osteoperosis. My t-score was -3.5 but I am hoping it will improve, as Junos has, when I have my next Dexa scan. I already had 2 spinal fractures before being diagnosed. I decided to take the meds as I found the fractures very painful just doing normal things. I like exercise and do not want to live the rest of my life in a declining chair. (Pun intended) I did a lot of research on side effects, and the chances of having problems with my jaw, or my thigh disintegrating with these meds are much much lover than the chance of me fracturing another vertebrae. My dentist assures me he has never seen a patient with problems after tooth extraction and this is when this would occur, but anyone on these meds he would give antibiotics before and after the extraction. He is very knowledgeble about many problems and helped me through my radiotherapy for a brain tumour, which can also harm teeth and  jaw. I trust him compleatly. My tumour is on my balance nerve but so far I have not fallen. Try the FRAX test. Your risk of fracture is not entirly dependant on your t-score. It is true, people who do not have osteoperosis, also break bones. Healthy bones however, heal better than those of us with OP. Good luck.
    • Posted

      Well, I am glad you mentioned the dentist because i have serious concern re proposed removal of some of my teeth.  (Seeing dentist next week). So, now I guess I must also discuss with him my situation re osteoporosis. Also i shall try and obtain a FRAX test - another trip to the doctor? all dood advice.  You take care and thanks.
    • Posted

      Hi Valerie,  You mentioned that your doctor said that the chance of a major fracture was 1 in 3. This probably means that he's already checked your 10- year risk and found it to be 25%, without treatment. Ask him if he did so using the FRAX asessment measure. 

      I know that your main concern is about side-effects of the common drugs used - Bisphosphonates (BPs) and this fear has been frequently debated in this forum. A few weeks ago I found an article reviewing treatment of OP with these meds. and it was published in The Journal of Bone and Mineral Research In Jan. 2016. It also includes some guidelines on treatment with the BFs There are 14 authors in total. 

      I'll try and outline what is said about the 2 most serious side-effects - Osteonecrosis of the Jaw (ONJ) and Atypical Femoral Fracture (AFF):

      ONJ   - " ONJ was first associated with BP therapy in a report in 2003 in patients with metastatic cancer recieving high-dose intraveneous BP therapy . . . Current estimates of incidence of ONJ range from I in 10,000 to 1 in 100,000 patient treatment years . . and is only slightly higher than the ONJ incidence in the general population"

      "Factors that increase the risk for BP patients to develop ONJ include - poor oral hygene, smoking, diabetes, ongoing use of steroids, undergoing chemotherapy and invasive dental proceedures (extractions or implants).

      For the vast majority of patients with ONJ treated treated with BPs, the clinical course is mild and self-limiting . . Although there appears to be a trend fo an increased risk of ONJ with duration of BP use, the quality of the evidence for such association is poor. . "

      AFF -" The relationship between AFF and BPs was first reported in 2005 in patients recievng oral BPs for OP. In a large retrospective analysis of 180,000 patients who had been treated with BPs, 142 cases of AFF were identified. . .  In terms of incidence rates, some but not all studies suggest a duration-response relationship - from 1.8 per 100.000 (with 2-year exposure to BP) to 113 per 100,000 (with BP exposure from -10 years). . .

      However,it is important to note that for most patients treated for OP, the BP benefit of reduced fracture risk beyone 5 years (Vertebral fractures) is greater than the the risk of developing either ONJ or AFF. . . . "

      Finally, in the Introduction to this review it is stated: " A fracture owing to OP occurs every 3 seconds around the world, with the hallmark fractures at the spine and hip leading to substantial mortality, morbidity and societal costs". 

      Food for thought . . . .  Now just don't shoot the messinger here!!

       

    • Posted

      Hi,  no I certainly won't shoot the messenger!  This is why I posted my query in the first place - to hear as many points of view as possible so I am grateful for all comments and articles. Yes I am concerned about ONJ as I already have a problem with my jaw and teeth and although the likelihood of it happening may be remote, once one has had an injection it cannot be reversed / removed from the system unlike tablets which can be stopped - should there be any ill effects. Neither is it possible to predict the long term results. I could take the gamble as, yes, I have one in four chance of serious fracture - or -as i am doing - obtaining as much advice and information as possible thanks to everyone's views expressed here.  I have however noted your comment about the benefit of reduced fracture being greater than developing ONJ or AFF.  Definitely something to think about. Thank you.
    • Posted

      Valerie, I suppose it depends which ailments are least acceptable, which will impact quality of life most. 
    • Posted

      valerie, if you already have a problem with your jaw and teeth, I don't understand why the doctor would recommend Prolia. While I don't want to put myself in the position of advising you on a medical matter -- and truly, I cannot -- what I will say is that, if it were me and I had a preexisting jaw/tooth problem I wouldn't touch that medication with a ten-foot pole.
    • Posted

      I'm glad you said that allison72169.  Sometimes I feel like a voice crying in the wilderness and I'm getting a bit more reticient than I was in the beginning about expressing my negative feelings about the OP meds.  
    • Posted

      Please dont feel like this. We are all here because we have an interest in our condition. A discussion group, to throw our finding into the debate and hopefully to help each other deal with OP. It is not a group to try and encourage others to take, or not to take prescribed medicine. Everyone is entitled to their views. No one is taking sides. I was devistated when I discovered I had OP. I was devistated when  I discovered I had 2 undiagnosed fractures. It was not an easy decision for me to take anything, even an over the counter pain killer. But, I have made my decision taking everything into account and I am happy with it. I totally respect what you have choosen to do and if I was in your shoes, I would have done the same. I have been interested in this forum for over a year. I would really appreciate to hear from someone who has experienced AFF or ONJ and their feelings as to, if given a second chance, would they have done nothing. I dont believe these incidents are common. But this is because I have never met anyone who has experienced these side effects and I have met several people who have experienced painful fractures and have OP.
    • Posted

      I certainly agree with that. Just checked Valerie's  original post and there waas no mention of a jaw/tooth problem . . . . J
    • Posted

      Exactly! I would have all my teeth extracted before I ventured down that path even though I know the blood test to check and I have an oral surgeon who does it by a special method when he has to extract teeth. 

      On another site I read stories of people who have had other issues with Prolia too. I would take fosamax before I would accept Prolia and I worry about my oesophageas if I were to start fosamax!

      Having said all that, the decision belongs to each individual.

    • Posted

      Error above. Obviously I meant " 1 in 4" in the first sentence. . . Sorry.
    • Posted

      I totally agree with you Alison ( with one L!). I find reading everyone's thoughts on the subject both rewarding, educational and stimulating - at least our fragile bones have not affected our brains - for that we should be grateful!
    • Posted

      I think I too would have any bad teeth removed befor commencing any meds. But, I never had to make that decision. I have 1implant, done 13 years ago, and it is solid. Will have it checked every 6 months. I am quite proud of my teeth. As everything else is falling apart, they seem to be still going strong. Keep smiling everyone.
    • Posted

      Exactly Mary. And a sense of humour is as important as calcium and vit D, oh and K2 of course.
    • Posted

      Cannot agree with that Juno, the post you made to Valerie about four hours ago was not made by anyone with an ossified brain.
    • Posted

      I think the opposing arguments are important. A one sided argument does not highlight anything except one person's or group's stance. 

      Juno and Allison, in particular, have shown how important it is to have both sides put under the microscope especially when both are so intelligent and so good at expressing their views and findings.

    • Posted

      Don't feel like a voice in the wilderness Anhaga - all views are most welcome and stimulate debate so everything you say is important. I feel the lost one because I have had osteoporosis for many years and tended to ignore it despite fractures be they minor - wrist toes etc. Now it's classified severe I am humbled by how much other people know and how concerning and sensible they are in relation to this health problem. I have learnt a lot from this forum - including getting my teeth checked next week!!  Yes, a sense of humour keeps the world going round so Alison I will keep smiling whilst I still have my teeth!!  /and hopefully even after I have lost them!!! 
    • Posted

      Listen to me, young one, all I did was read the darn  review,  pick out a few salient points and type them out . . . (Helps prevent arthritis of the fingers!).
    • Posted

      Thank you. Its a long, long time since anyone referred to me as "young one", but you've made my day!   I've been out celebrating for the last six hours!!!!!!!!! 

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