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

    Valerie, It seems that what you have been prescribed is a drug called Prolia. It's used in severe OP especially when the person cannot take Alendronic Acid (AA) because   of stomach problems or can't adhere to the advice re. taking it. Prolia is a strong bisphosphonate, it has benefits in that you only need visit the doc. everky 6 months, but the recent fidings are that it is no more effective (preventing fractures) than AA.  Both drugs (in fact ALL drugs) can have side-efects - some serious ones, though allegedly rare while fractures are unfortunately quite common.  

    Do you know your T-score? Have you had any fractures?  Have you been fully checked out for any other causes of your OP?  These are important.  . . 

    Finally are you happy that your doctor is competent and knowledgable about OP? If not, at LEAST get a second opinion.

    Keep in touch,  CB

     

    • Posted

      Thank you for your helpful reply.  Yes I have had fractures, stupidly  I didn't take a note of my T score but just took the doctor's word for it. He didn't seem to have much knowledge as he looked up what to do in a medical dictionary, gave no advice and said a nurse would give me the injection.  I have since had qualms about proceeding on such little information and agree thanks to you about getting a second opinion.
    • Posted

      Lord, if any doctor started looking up stuff in a medical book while I was waiting I'd definitely get another opinion!  However, It may well be that he was just checking to make SURE of something and the next doctor may recommend the very same treatment . . . 

      I was also diagnosed (by accident) with 'severe OP'( T score at spine - 4.5) and was very shocked and fearful at first. Kept thinking I'd just disintegrate into myself!   I was prescribed a daily- injection drug called Forteo (the other strong drug for severe OP)  and so far so good and my T score improved by 11% in one year. 

      You mentioned to Mary D that you cannot walk much due to arthritis but don't get depressed as there's LOADS of other exercises you could do that would help you. After you've sorted things out with the 2nd opinion doctor, the only other thing I'd do is arrange to see a Physiotherapist who is traiined in dealing with OP patients and in one session she would devise a training program that you could do daily at home targetted only at you. Really good. The rest of the advice and information can be found on this forum or on the NOF site. Just Google.  Kind thoughts,  CB

  • Posted

    Hi Valerie.

    i am in the same boat as you and couldn't get on with alendronic acid. My doctor is recommending the injections as well but referred me to the osteoporosis clinic as I have other issues linked with having had breast cancer. I'm very wary about these injections and my appointment has not yet come through. I too would welcome any views from anyone who has gone down the injection route - is it Prolia? Chris

    • Posted

      Sorry to hear about the breast cancer but hopefully the osteoporosis clinic will give some valuable advice which you will be able to pass on? Unfortunately my doctor didn't even say what the injection would be - he has left me guessing whether it is Prolia or not. I hope between us we gain more information.
  • Posted

    I am sorry to hear about your diagnose. You say you have severe osteoporosis - what is your t score?

    I have no medical training and can only comment on my personal experience.

    My spine t score is _ 4.9, was _5.2 when first diagnosed about five/six years ago. I am unable to take tablets so have six monthly injections of Denasumab (Prolia). I am fortunate that I have no side effects. I also take calcium with magnesium, vitamin D3 and vitamin K2, exercise regularly ( pilates, zumba, walking, weight bearing ) and try to eat healthily.

    You will receive lots of advice from this site - good luck.

    • Posted

      Thank you Mary. I am glad you have no side effects, so that is encouraging for me. I do eat healthily but cannot walk owing to osteo arthritis.  So frustrating 'cos I know exercise and walking is good for anyone suffering.  Good luck to you too.
  • Posted

    I totally agree with Juno ,

    Do get a second opinion Valerie.  When I was first diagnosed I saw a locum doctor who (I now realise) knew NOTHING about osteoporosis , yet was happy to prescribe bisphosphonates to me. When questioned gave me no guidelines, told me I would be on them for life and that I would NOT need another dexa scan,  oh and prescribed one of the cheapest form of calcium with vitamin D available that, on researching I  found contained far too much sugar and a colouring that is banned in Norway!

    Since that time I research as much as possible (thanks to relatives, who are doctors, and of course the internet).

    Osteoporosis is a silent condition, the real danger is the "risk" of fractures and this is linked to the T score. It is possible to go through life with a high fracture risk t score yet never fracture. However, one can have an excellent bone density and still get a fracture. Its all about reducing our risk of a fracture. 

    There are many risks associated with drugs prescribed for osteoporosis, however because of the severity of my t score and after loads of advice, I chose the drugs route.  Many will disagree with me and have chosen the natural way.

    There is no right way -   do your research, get as much advice as possible and go with your gut feeling. Good luck and try to remain positive 

    • Posted

      I appreciate all the advice and know now to get a second opinion. also to be very aware of what I am taking and do even more research. I think it would be useful to get my t score as all the doctor said was that it is severe osteoperosis and my chance of a major fracture is one in four - whatever that means because  - as you say - even with a good bone structure people still get fractures. seems like I had better do more research on all of this. best wishes
    • Posted

      If you have not had any fractures your options regarding whether to take the OP meds or go with the "natural" method are much improved.  I wouldn't presume to advise someone not to take the meds if they've already had spinal fractures, but if you haven't it would seem that you are in relatively good shape.  I have been put into high risk category because I have osteopenia (T-score -2) had a broken tibia (slipped on ice and twisted my knee sideways, so I question it was a genuine "fragility" facture) and have to take corticosteroids for PMR.  But I've upped my game regarding nutrition, supplements, and exercise and feel pretty confident that if I can continue to reduce my prednisone dose as well I should never need to take the AA my doctor so desperately seems to want to give me!  Time will tell.  If you take calcium and D3 be sure you are also getting K2 (not K1) as that is the vitamin that makes sure calcium gets into your bones and not deposited onto the walls of your blood vessels.  K2 is hard to get in the modern diet and is not the same as K1 which we can get from leafy greens.
    • Posted

      Anhaga, what dose of Pred. are you on at present as I also have PMR (you probably know)?  I am at 2.75 now (after nearly 3 years). I have somewhere at the back of my head something I read about when Pred. is stopped some loss of bone that was caused by the steroids can then improve somewhat . . .. Did you hear of this?   J
    • Posted

      I started at 15 mg in June 2015, and am currently tapering to 5.  I am sure that everything pred causes reverses at least partially after we discontinue it, but I have heard that the bones are vulnerable right down to a vanishingly small dose.  Worse at higher doses, so you are probably getting to a pretty safe range by now.  I think it is pretty well certain that bone loss can be improved through various strategies.  In fact I have a couple of friends who have done just that, completely without the use of OP drugs!
    • Posted

      My Rheumatologist said that if you are taking > 5.0 mg. steroid  for > 3months you should be on a bone protection med. for the length of time you are on this dose. . . Also, being on ANY dose of steroid (when doing the FRAX assessment to determine risk of fracture) dramatically increases the end result - where they report your percentage risk over the next 10 years.  . . . That's probably why your doc. suggested AA.  J
    • Posted

      Thanks Juno.  I know that, but there is no way that I will consider risking the side effects of the OP drugs.  I've developed a rather extensive regimen to counteract the bone thinning effects of pred and remain confident I've made the right decision.  I think reducing my dose by two thirds, and counting, in nine months is as good as could be expected.
  • Posted

    I completely agree with the advice to get additonal medical opinions.  Also, if you decide the OP drug is your best short term option, that should not stop you from doing everything you can to improve your bone health through diet, supplements and exercise, especially weight-bearing (by which, if you are truly osteoporotic, I mean walking!).  One thing to watch out for, apparently there can be a disagreement between certain OP meds and calcium of all things, so if you are using both medical and natural protocols, do check with a knowledgeable person (a pharmacist or registered dietitian) about possible negative interactions between your prescription and additional supplements you might be interested in taking.
    • Posted

      Thank you Anhaga - that is interesting as I was certainly on both for a while - the doctor tried to put me on Alendronic as well as Calcichew BUT on the calcichew bottle it says DO NOT take with Alendronic!!  That wasn't good was it?  I will certainly check everything now as am also taking over the counter supplements.
    • Posted

      Sometimes I think the doctors make things even more complicated and difficult for us.  My doctor is really disappointed that I refused to take any OP drugs.  She is still talking about my having osteoporosis, but I finally got my T-score and I'm "only" osteopenic, so I'm pretty sure I've made the right choice, at least for now.  cry
    • Posted

      I'm sure you have made the right choice as you seem pretty aware how to manage things thank goodness.
    • Posted

      Hi again Valerie, just to say the advice "do not take with Alendronnic Acid" really means not to take the two at the same time. But the Calcium CAN safely be taken a few hours later. Calcium and Vit D are the standard therapy alongside AA and other similiar meds . . . No panic!!

      By the way your local pharmacist is a mine of information - for no charge -if  you have any questions or worries about medication. They know much more than doctors, and, if not really busy, are happy to talk to patients as it can be boring enough in a little room putting pills into little bottles!!!   J

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