Devastating dexascan results

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Finally received second opinion from dexascan and it shows I am at severe high risk of fractures in both hip and spin, all t scores were minus and Dr said it has gotten worse and worse in past three years and Dr wants me to get Prolia immediately. I also was just diagnosed with a cholesterol of 240 and told my diet must change. I am so afraid to get the Prolia, reading horrible side effects from some and that it also raises the cholesterol levels, as does the pred so very confused. I am wondering if I can control the ostoporosis with a new healthy diet and supplements instead of the Prolia, I dont want any more meds and right now Im in pain even with the 10 mil of pred so hoping for some advice.

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  • Posted

    If you have really got to the osteoporosis stage then you have got to a stage where diet is unlikely to work. Perhaps if you had started 3 years ago it might have been enough to prevent getting to this stage.

    Do you have your actual t-scores? All mine are minus - that is normal enough at our age - but not so minus that it is a problem yet. I do not approve of the bisphosphonates (alendronic acid/Fosamax) being handed out like sweeties as a "preventative" but even I would seriously consider something if my bone density was seriously reduced.

    However - remember than with most drugs you only hear the very bad stories. Nefret on this forum has been on denosumab/Prolia for well over 2 years with no problems at all - and her bone density is now classified as normal.

    • Posted

      Eileen so many papers but on page one it states BMD  measured at Femur total left t score is -3,4. then it says spine -3.5 and it goes thru all of other regions showing -2.8, -3.5 etc. It states the according to World Health Org Fracture risk is high. Today the Dr decided not to administer the shot because my cholesterol came back at 240. Maybe its because the Prolia also raises this. My internist does not want to give me any meds for this and advised me to change my diet so now I have one more thing to worry over and try to get under control. I will be 65 this July and really want to get this all under control and I was going to tak ethe shot today but now its a waiting game again but I dont want to wait to much longer. I agree I am trying not to focus on all of the negative responses to the Prolia but if I need it which it looks like I do then I have to give it a try, right?
    • Posted

      Those are very low - -2.5 is the borderline between osteopenia and osteoporosis.

      It is said that cutting carbs helps to reduce cholesterol - it isn't easy really. But if you don't have a history of cardiovascular events and your family history is fairly good then there is less to worry about with the chlesterol. I suspect mine is about that but I don't take statins - I had one brush with them, never again! It made PMR look quite mild!

    • Posted

      Eileen I agree, my husband and I are bifg on pasta,especially all of the Italian cheeses that go with it, it will be hard for me to give this up but will do so as we eat it way to much of it but I just started buying the all vegetable pasta so hopefully that will be ok. For him though it has to be the real deal, no substitutes so I will be doings lots of seperate meals. I also do not want to take a statin, no more meds than needed. Before i forget Im still at the 10 mil of pred, what is advisable to go p, can I go up in two mil increments or should I try one mil more? The ten is doing very little for me, but I only have 5mil pills and can only cut them in halves.

      Thanks again,

      Sharon

    • Posted

      I have basically cooked 2 separate meals for years - since my husband had cancer 22 years ago his tastes changed and nothing would induce me to eat what he likes (not a lot of variety to boot)! But with a bit of ingenuity it is possible to come up with things you can share - and add the extras for them. My daughter does much the same on Slimming World and with 2 large and fairly sporty men to feed. She uses veg where they get pasta. She doesn't have roast potatoes - they do and she has roast veg. If we have meat - he gets fries or bread or pasta with it, I have veggies or salad instead. 

      Beware - I just looked up the Barilla vegetable pasta, if that is what you mean - it still contains wheat and has a fair bit of carbohydrate in it. You will learn how to read labels very closely but it becomes second nature after a while.  And really - baking needs to become something for everyone else and jsut a treat for you very occasionally. I know it sounds hard but it is for a good cause.

      If 10mg is doing very little you probably need to try 12.5mg initially and then work down - you can mix days of 12.5 and 10 to reduce so the total dose over a few days is going down, it doesn't have to be the same dose every day. Do discuss it with your doctor - but there is no point at all taking 10mg of pred if it isn't managing the pain.

    • Posted

      Hi Sharon, you should get yourself a spiriliser and you can spirilise courgettes instead if using pasta, honestly once you have a sauce on it, like any other pasta, you wouldn't notice the difference!! My daughter adores pasta and would live on it 24/7 and she loves the courgette instead. You should give it a try! 😀

    • Posted

      We don't have a spiraliser (yet) but a vegetable peeler did the trick and zucchini/courgettes didn't take too long to prepare.  

    • Posted

      I use a potato peeler to make lasagne substitutes from zucchini.
    • Posted

      Eileen the pasta I was referring to was Ronzini Garden Delight, one serving of veggies per 400z serving, spinach, carrot and tomato. 0 cholesterol, 0 trans fat and 0 saturated fat. 40g of carbs per 3/4 cup, 0.5 polyunsaturated fat and 0 monounsaturated so not bad for the pasta lover. I guess as a treat this cant really hurt but must omit the cheese unless its fat free.
    • Posted

      oh.....I love zucchini...Thanks for the tip, will definitely use it because I do that with spaghetti squash too.
    • Posted

      Sharon,  Unfortunately I have been on Statins for 35 years, taking after my Mother who also suffered from high Cholesterol.  My G.P took me off the statins last year as the PMR was quite bad and he thought the statin was contributing to the pains.  I ended up having a Trans Ischaemic Attack 1 month ago (small stroke)  Neurologist said because I was taken off Statins, this more than likely attributed to this, so once again I am back on them.   I feel okay at present, no more extra pains, hope this continues, but I will always stay on them, as I do not want to experience a large  stroke.

      Just a bit of information for you to think about.

       

  • Posted

    Yes, confirming Eileen's reply, I have no obvious side effects from Prolia and bone density is now in the normal range.

    If you have any questions I'll be happy to answer them.

    • Posted

      Oh hi and thank you Nefret, I hope you read my reply to Eileen, all of this happened this morning so now Im even more confused. I have to try to lower the cholesterol, I went out and got fresh fish, veggies and threw out all of my sweets, Ill try baking with all natural ingredients and hope it helps but for my bones as I stated the t scores to Eileen it doesnt look promising unless I take the shot and they cancelled on me right in the office this morning. Did you have or do you have any jaw problems, urinary infections with the Prolia? Some of the responses were really scary, especially the ones who had heart problems. I appreciate your feedback so much.
    • Posted

      No jaw problems, no UTI's (oddly enough I had a severe one just before starting Prolia).  The problem is that all that gets known are the bad ones, never the good ones.

      If you looked up the side effects of paracetamol, you'd never take it again.

    • Posted

      Hello Sharon...omega 3 and high fibre also help to reduce the bad cholesterol levels. the mediterranean diet is said to be best..more pills and lots of olive oil on your salad !

      Michael moseley did a good programme this week BBC2 last friday at 9pm talking about Omega 3 !    

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