Advice needed re good bone unit

I have osteoporosis in my spine, with one compression fracture, and osteopenia in my hips, all probably long-standing but only recently diagnosed when arthritis scans were done. I've just been handed Alendronic Acid tabs (plus calcium carbonate and D3) and left to get on with things....I'm very concerned about the whole thing and reluctant to start on the drug, esp since I've been given almost no advice re exercise and other supplements. 'Advice' so far has been limited to my rheumatology clinic (whom I rarely see) and I'd like to be referred to a good specialist bone unit, ideally in the south east of England. Can anyone recommend one? I really don't feel that my osteoporosis is getting the attention it deserves and I have lots of autoimmune conditions, so need to do my best on all fronts!!

17 Replies

oldestnewest
  • I can't offer specific advice, and don't even live in your country, but I understand that there is an osteoporosis organization with a helpline which is very helpful. I believe it is this:

    nos.org.uk/

    I also think you should check this recent post:

    healthunlocked.com/boneheal...

    Yes you are very wise to be wary of AA and all the other drugs. Depending on your condition you may well be able to improve your bone health with only diet, supplements and exercise. I did, and I am not alone in being able to.

  • You need a bone density scan first stop GP for a referal if you wait till next appointment at rummy clinic they my tell you to get GP to do it all adds time. As for Alendronic Acid I take this with my history best thing. I was the one who made the decision you are the one who is in charge . Help line open Tuesday they are very good,

  • Hi Ranne21

    So many of us when diagnosed with OP feel just as you do, that we do not get the attention it deserves and are quickly prescribed drugs, AA being the first port of call that the gps always prescribe and the calcium and Vit D tablet. I had a chat with my gp about the amount of calcium I consumed in my diet and it was decided he would only prescribe me with the Vit D as we both felt that I did not need the calcium in a tablet form. I asked my GP to see a "specialist" regarding my OP and I am now seeing a Doctor in the Endocrinology Department in a hospital near me. I was very happy to discuss everything with him and wished to stay on his books and I will see him again in April which is a year from when I last saw him. I am prescribed Protelos - strontium ranelate by this doctor and this was the drug that I wished to take. I have very bad joints and did not want to take the risk of any more joint pain as a result of taking any other OP drug. I had already tried AA and Risedronate and they both gave me stomach problems. One has to fight for attention I am afraid. Knowledge is power.

    Why not call the helpline at NOS and have a chat with one of them if you have not done so already.. I have heard the nurses are very helpful.

  • I agree knowledge is power. I have started on AA as have old spine fracture, curvature and hip problems. My sister was on them but opted to change to Prolia. My oncologist is happy enough that I am taking them. If I started Prolia I need to have kidney function test every six months so prefer to stay off it as I do not need damaged kidneys as this would prevent me having further avastin for Ovarian Cancer. My Rheumatologist also told me take them only for two years have a yogurt a day and cheese and walk. Walking is difficult as have hip tendonitis but okay on the flat

  • Many thanks for the comments so far. I'm still puzzled about how hospitals deal with osteoporosis patients and would be grateful to hear from anyone else who has been lucky enough to receive comprehensive and thoughtful advice.

    Kaarina - I totally agree that 'knowledge is power'. I was interested to see that you're not taking a calcium supplement, as I have a feeling I don't need one either (I have a very healthy diet but have been given Adcal D3, which seems to contain considerably more calcium than I probably need!). Fortunately I have a helpful GP so I'll take that up with him.

  • You are lucky if you get referred to an OP "specialist" - I asked to be when I was first diagnosed, but not possible in Gloucestershire on the NHS (I had no other health issues). I was given Alendronic Acid but it gave me terrible stomach pain and heartburn. I chose to stop taking it and instead am relying on careful diet, exercise and supplements to support my bones. I have found helpful advice on a couple of US websites : Save our bones and Better Bones as well as the NOS here in the U.K. I don't agree with or follow everything I read but there is a lot of information out there. Sadly GPs are not best placed to advise - I was shocked when I was given AA and then told to contact the surgery in 5 years for a follow up DEXA scan. Not the best service - I was left reeling after the diagnosis and there was no support. I have found most of that online. Good luck!

  • Hmm....I'm going to work up a plan then get advice on it from a rheumatologist who has particular expertise re osteoporosis. I've been struggling for a while to see one local consultant but still can't see him for several months. So at the moment I'm planning (even if it makes me really cross to have to do this!) to see him privately for one session just to run through the plan. The plan would involve some kind of compromise - maybe having 18months or a couple of years (?) of exercising, adapting my diet and taking additional supplements, then being re-scanned and if things haven't improved possibly taking AA for a trial period of maybe two or three years (it seems to be the only drug option for me owing to my other health conditions). But I remain unenthusiastic!

    Weight-bearing exercise, K2, magnesium, adapting my diet (I'm vegetarian) - there will be others and I'll definitely be looking at the recommended websites.

  • Hello Ranne21

    Your post seems like a good plan. I too had one private session with a specialist whose speciality I have now forgotten, but it was to ask if it would be a good idea to have a kyphoplasty or whatever it is called. But it wasn't as too much time had elapsed since the break.

    However to answer your first post, I don't know what a specialist bone unit is so can't help you there. As far as I can tell there is no specialism devoted solely to Osteoporosis. At UK hospitals and clinics it is often handled by rheumatologists/endocrinologists etc. These doctors often have a special interest in OP as does the rheumatologist you are going to see, but I think you would have to look long and far to find one devoted solely to OP.

    I was first diagnosed with OP around the year 2001/2 or thereabouts after I broke my tibia and fibula for no good reason other than falling over. Or I may have fallen over because I broke my T and F. Was running at the time.

    Over the years I have taken assorted meds. Fosamax. Protelos. Prolia. None of them have given me any side effects. In the interim I have had a broken humerus, (which anyone might have had in the circumstances) and a few assorted spinal fractures, so could be worse as I am still independent and annoying (according to some people!). Anyway, you seem to be setting out along the right path.

    Good luck.

  • I was diagnosed with Osteporosis, but other than push drugs suce as Alendronic Acid or Denosumab the doctor and hospital clinician have been of no help whatsoever.

    They did not inform me of the possible side effects and when questioned they dismissed my concerns with the usual 'only 1 in 1,000 is effected with lockjaw' etc.

    It seems to be that the medical profession are in the pockets of the pharmacutical industry to such an extent that greed has overtaken their will to heal and tropical holidays and cash inentives are their main motivator when it comes to treating disease.

    There have been many articles exposing this greed if you google the topic you will find one particular expose in the Telegraph.

    Novortinw, hich manufactures Zolondronic Acid has invested £milions into research in many University College Hospitals so no doubt the medical students feel indebted to repay them back by prescribing their drugs, and it seems the elderly who suffer from Osteoporosis appear to be their guinea pigs, and we are very rarely given the true picture of have the potentially toxic side effects revealed to us.

    The pharmacutical companies have effectively bankrupted the NHS with the help of less than honest procurers of drugs at hospitals all over the UK and it is a disgrace.

  • I did exactly as you ranne21, went privately to see a rheumatologist at great expense and afterwards was really none the wiser i.e. She said take alendronic acid to insure yourself for the future. But you can't take it long term so then what do you do? AA killed my insides so I stopped taking it. So I have since relied on dietary change (more alkaline - I am veggie so not difficult) exercise and supplements : raw calcium, Vit D3, K2 (MK7) magnesium etc and so far so good, but I admit I live in fear of spinal fracture and/or shrinking - my OP is in my spine) and my hips are are on the cusp of becoming so. An Understanding GP has recommended getting repeat Dexa scan at 3 years rather than wait for 5 years - however low bone density is not alone an indicator of fracture risk. It is very difficult and everyone is different and reacts differently to drugs and other approaches. I just know that the way OP drugs work is completely counter intuitive - i.e. Stopping the formation of new bone whilst increasing density with "old bone" which is less flexible and more brittle than new - hence the atypical femoral fractures. I wish you luck with it all, the whole thing is a minefield which the NHS I'm afraid is ill equipped to deal with, other than the drugs route.

  • Here is a study which showed that nutrition helped bones:

    hindawi.com/journals/jeph/2...

  • Very interesting, thanks HeronNS. Do you know if any follow up studies/clinical trials have been done? Presumably funding could be an issue if there's no big money in it for anyone...

  • I only know what I've found on the internet. Now that things have been going so well for me I haven't really been looking for any further information, unless specific questions come up. I agree that it's unlikely much more research has been done on the value of nutrition. There's nothing in it for drug companies, and universities have such limited funding. I can also tell you that in my experience and that of an inspirational friend of mine nutrition and exercise are effective. At least they have been for us. My friend was probably around 60 when she started her osteoporosis journey perhaps ten years ago. I was 68 with the diagnosis of low bone mass about twenty months ago. Although I have PMR and have been on low dose prednisone for a year and a half I don't think my friend has any complicating other chronic conditions and I have no others. This might make a difference although I think in most cases one would find that anything done to help the bones will also help the rest of the body. :)

  • Many thanks. I'm just gathering evidence in advance of seeing the consultant so I can at least argue the point coherently (you can picture how the conversation will go!!).

  • PetaWinter, although I've finally found out that my spinal density is pretty good, I'm shrinking anyway. I guess the discs become compressed.

    Further to osteoporosis and shrinking, however: one of my neighbours had become very bent over from osteoporosis. She went to a Nordic walking class. Although she's not yet able to use the poles quite the right way they have definitely helped her become much more upright. This has given her a whole new outlook on life and she's the instructor's star pupil! I think she must be about 80. So there is always hope.

  • Thanks that's really interesting. Does anyone take strontium as a supplement and if so is there a reliable supplier - i.e. Trustworthy and reputable - and available in the U.K.?

  • Strontium is heavier than calcium, so the bones appear more dense when scanned. It would be interesting to know if they are actually stronger. I understand that, like so many other things, strontium and calcium have to be taken at different times. The body prefers calcium and will not absorb strontium if it's presented at the same time of day. There are some "natural" forms of strontium which I think are generally available like other supplements are. The prescription strontium is a manmade creation, strontium ranelate and it hasn't been approved for use everywhere. Like anything else - do your research! It could be that one of the natural forms works just as well, whatever that means, and would be much cheaper.

    webmd.com/osteoporosis/guid...

You may also like...