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Newly diagnosed with osteoporosis

Posted , 10 users are following.

clive_65635
clive_65635

47 year old male now been diagnosed with OP, been giving as every been calling it the AA drug and after reading some of the discussions on here, not really looking forward to using it and if to do so at all, not really sure wot a z score is either

1 like, 94 replies

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  • val04862
    val04862 clive_65635

    Posted

    I fully understand your concerns here and in my opinion they are well founded. I have been taking Alendronic acid (AA) combined with Calceos for 5 years now and they are working well which is clearly on the plus side. Also on the plus side is that I am now so used to drinking half a pint of water with each tablet that I actually enjoy it!  On the minus side Calceos is VERY bad for your teeth so they need extra special care and regular checkups with the dentist while the AA makes teeth very brittle and if they break and need removal the dentists are very reluctant to do the work. To try and protect my teeth I crush the Calceos in a pestle and mortar so I don't have to chew them.  Finally as they have worked well I will be able to stop the AA tabs soon but will have to continue with the others for the foreseeable future. As always you need to weigh up the pros and cons.  Good luck with whatever you decide. 
    • alison28608
      alison28608 val04862

      Posted

      Hi. Somehow I missed your post when it appeared, but delighted to hear you have had a positive result with AA. I am very interested in your findings on Calceos and would like to read more on this. Could you point me in the direction of where you gained this information please? I want to keep my teeth in good condition, for as long as possible, thanks
  • alison28608
    alison28608 clive_65635

    Posted

    I too understand where you are coming from Clive. I wasnt diagnosed when I was 47 but had my first spinal fracture at that age. Second one at 59, diagnosis at 60. Been on AA for 8 weeks, but will not know how much it is helping for almost 3 years when I have my next scan. No side effects so far except really tired the day I take it. Everything else has settled down ok. Not sure if you mean the T score. If so, the higher the number the less dense your bones are. Have you been given this number? If it is low, or more close to normal,  you might only require supplements of calcium, D3 and K2. Dont be afraid to ask your radiologist.
  • clive_65635
    clive_65635

    Posted

    Thankyou to both of you for your information, the trouble with the local gp they say things so quick its hard to take it all in, so when I went for some blood test I had a little read of the information she was sent,I knew people on here were talking about their t score so tried to find mine but it said a z score of - 4 had a little investigating on this all I've come with is that they are still diagnosing the cause of my OP weather that is right I don't know, will wait for more information on the AA before I even consider taking it
    • kathleen65757
      kathleen65757 clive_65635

      Posted

      I have an unopened box of it and have decided to try a natural route at least for a while. I am having dairy including cheese and yoghurt as well as vitamin D 3 and magnesium. People are also saying exercise like walking helps. I will recheck my bone density as soon as I am allowed.

      After reading comments and my own research I have a gut feeling to wait to take the medication.

       

    • clive_65635
      clive_65635 kathleen65757

      Posted

      Likewise Kathleen I will be taking the natural route for the time being the tablets can stay in their box, also taking other meds for another condition so not sure if the medications will react against each other,

      Good luck with the healthy eating and yourself

  • chris00938
    chris00938 clive_65635

    Posted

    Clive, have you had a bone density scan?  If you have, have you asked for the copy of the results from the hospital?  That's what you definitely need. 
    • clive_65635
      clive_65635 chris00938

      Posted

      Firstly I had a xray because of back pain where they discovered compression fractures then sent for density scan with results that I have OP,will ask for copies of results next time I visit the gp
  • alison28608
    alison28608 clive_65635

    Posted

    Totally agree with Chris. Before you can make informed choices about what treatment is best for your condition you need to know how bad it is. Understanding the severity of your osteoperosis is crutial. Weight bearing exercises and sun are also natural methods to follow, but again it depends on your t score. Unfortunately its more about managing rather than curing.
    • clive_65635
      clive_65635 alison28608

      Posted

      Everyone mentions their t score all I could find when I nosed at the doctors email was a Z score, will wait on blood test results before considering taking the AA tablet from what I've read they scare the crap out of me and they don't seem to have alot of evidence that they actually work, I've joined this forum to get the experiences from people that are taking them any advice is much appreciated
    • chris00938
      chris00938 clive_65635

      Posted

      Clive, the information that we managed to get from the GP WAS NOT OFFERED - my husband almost had to demand it - and it showed a BMD, T score and Z score of the AP spine, Femoral Neck left, and Total Hip left.  There was also an 'intervention threshold' that showed the likelihood of major fracture and hip fracture over the next 10 years.  My suggestion would be to get hold of all this information - you are entitled to it.  And then DON'T do what I did - I trotted along to my doctor, was given Alendronic Acid, calmly took it without having any of this information!  It was only after I got this information 6 weeks later that I found I didn't need the AA.  I'm not saying your situation will be the same but now I realise that the very least my GP should have done was instigated a discussion - again, you are entitled to this!  Find out what your situation is EXACTLY, and what your options are.  The medication for oesteoporosis is not something you want to take without knowing how necessary it is and the side effects.  Also, read studies that have been done, so you're in the best position to make as much of an informed decision as you can after discussing these with your doctor.  Take notes with you.  I think once you've got a plan you'll feel more in control of the situation.  I wish you all the best.
    • alison28608
      alison28608 clive_65635

      Posted

      The evidence is such that these medications work well, but can have side effects. A very small chance of 1in 1,500 ( medscape study ) having a particular fracture of the femur, but at the hospital, I was told I had 1in 10 chance of fracturing another vertebrae in the next 5 years. I felt the risk, for me was....no contest. I followed the natural route for years, but now I have a t score of 3.5. AA and other drugs like them, make new bone and supplements will not do this. The risk increases if you stay on the bisphosohonates for more than 5 years. Can I also say, good to see Juno has emerged from the duvet.
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      Hi alison, yes fully out now - took a while!  Then went on holidays. Also just to mention,  I had a repeat dexa scan done recently. Results showed that I'd moved from a really terrible - 4.5 (spine only) to a terrible -4. No fractures. This was after  one year on Forteo injections and 9 months on Actonel. Had no problems with either. The rheumatologist  wants me to return to Forteo for a second year and then back to Actonel for 4 more years. A bit depressed about this at first but then thought that going from -4.5 to -4 is in fact an 11% improvement. So maybe not so bad.. .  Have an apt. with the rheumy at the end of August so I'll ask her to clarify the bone density/bone strength issue (remember?).  Kind thoughts, J
    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      I would love to know how this is worked out too, so keep us posted. Thats great news that you are heading in the right direction too. I have only been on AA for 8 weeks and having been a nurse, realise all medicines carry a risk, even herbal preperations. The trick is to weigh up the risks with the correct information and I too think, the Mayo clinic is one of the best for information. Hope you got some sun on your hols for your bones!!
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      No sun for bones - was in wild, wet and windy west of Ireland. But stunning scenery. . .  At the time of my severe OP diagnosis, a close friend was  diagnosed with agressive breast cancer - and it really helped put my OP in some perspective. So - the plan of action emerged (after much reflection and reading) - take the meds., walk 30 mins. briskly each day, get calcium mostly from diet and Vit D from drops, -  AND, above all, try not to fall !!!  Am an active 63 year old, but often lazy. . . .  Will keep in touch. J
    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      I am a very active 60 year old and have run x3 weekly until second fracture. I slipped on the stair for the first fracture, then tried to lift something too heavy at the second. My luck gave out when I was diagnosed with a brain tumour....on my balance nerve. Did dancing since I was small so luckly my otherside compensates. Practice balance every day so dont intend falling. Keep that centre core toned too. You might need the bikini for the next holiday.
    • clive_65635
      clive_65635 chris00938

      Posted

      Thankyou Chris, was also told the likelihood of fractures in 5 to 10 years the rest he said didn't really sink in,but will go more armed with questions next time and will ask for a copy of results, like most people Im against take prescription drugs without full information on its effects and results

      Thankyou and good luck with your own issues

    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      Hope the brain tumour is being treated well Alison. I worked in a hospital in Dublin which was the national neurological treatment centre (I worked in the Cardiology Dept.) and it had an impressive record of success for many treatment approaches. it's good that the dancing competence stood by you many years later!  Dancing is also really good for bones, as I'm sure you know.  . . Do mind yourself.  J 
    • Juno-Irl-Dub
      Juno-Irl-Dub chris00938

      Posted

      Thank you Chris, it took me a while to get my head around it but I've settled down again. Onwards and upwards . . I hope.  J
    • chris00938
      chris00938 alison28608

      Posted

      MMMM - no comment about the bikini LOL!  How are you re the brain tumour now Alison?  
    • alison28608
      alison28608 chris00938

      Posted

      It has shrunk due to steriotatic radiotherapy. Horrible treatment!!! But just think what state my teeth will be in with radiotherapy to the brain and AA. Think I will go choose a nice new set immediately
    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      Yes thanks. Very sucessful treatment and excellent care for the brain tumour. My osteoperosis is being monitered at the same hospital, but lacks the funding and support necessary in this department. Me, I worked in maternity so didnt come across many people with OP.
    • chris00938
      chris00938 alison28608

      Posted

      Alison, what a rough time you've had.  But I'm so glad to hear the tumour has shrunk.  I didn't even realise that radiotherapy affected the teeth but I hope yours hang in there as much as possible:-)  I had bleeding from my gum infection last night so I think a trip to the dentist tomorrow might start a course of a different antibiotic in the hope of hanging on to the tooth.  I feel selfish worrying about a tooth when so many are having serious problems compared to my trivia really.
    • alison28608
      alison28608 chris00938

      Posted

      Hey dont think that. There is always someone worse off and better of than we are, always. I have been lucky because my salivary glands have not been affected and one of their functions is to help the teeth stay clean. Was advised to chew sugar free chewing gum, but not sure if this would be benificial for me with OP and on AA. Anyone know?
    • chris00938
      chris00938 alison28608

      Posted

      There was a programme on tv about a chewing gum that reduced bacteria hugely and they are handing it out in some schools after lunch now.  I've no idea if the extra stress on teeth would be good or bad though.  I suppose, if it's like weight bearing on bones, it might act like weight bearing on teeth to strengthen bone?  Interesting question!  I think I might google 'does chewing on gum strengthen bone'.
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      Alison, I think the benefits of sugar-free gum is that chewing it stimulates the production of more saliva - thereby helping to clean the teeth . . Never thought of the process as being a mini weight-bearing exercise for the gums and teeth !!  I suppose, logically, why not?  (Well done Chris!). I've been told that the best way of keeping gums and teeth plaque free is to use a sonic toothbrush - one that works by forcing water (spit and toothpaste) between the teeth and just below the gum line to swish away the bacteria- laden plaque . . I bought one recently and it's a very different experience to cleaning with a 'normal' brush. Phillips make them in variouis price ranges. Dentists say that this method of tooth-cleaning is very gentle on the teeth and gums also - but check with yours first as he may have other ideas . . (Lord it's amazing the things we discuss here!). J
    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      It sure is, but it just shows how OP impacts on our lives. I agree it is the stimulation of the saliva that cleans teeth, not the chewing gum as such, but not sure if the chewing has a positive effect, like a workout for teeth, or a negative effect on stressing teeth already weakened by OP and the drugs. Going to buy one of these sonic brushes though. Worth a try. Got reasonable teeth to date, and, would like to do all I can to keep them. I have a tooth implant and its still solid so, fingers crossed.
    • chris00938
      chris00938 Juno-Irl-Dub

      Posted

      LOL!  Thank you Juno, but I don't know if there's anything in the idea.  I've used a sonic toothbrush for years and love them but I do find the 2 minutes they allow is never enough.
    • Juno-Irl-Dub
      Juno-Irl-Dub alison28608

      Posted

      I've been checking out the "effects of AA on teeth"  and have found only cautions re. dental extractions, no mention of teeth weakening or loosening.  So maybe  some of your other treatments are to blame?? Or maybe it's just age-related. (Sorry)  Sonic toothbrushes are suppposed to be fine with crowns, according to the makers but ask your dentist first.  Finally, re. the dental workout - are you planning to do it night and day? Because I think all you'll get from it will be very sore jaws, wouldn't have any higher hopes than that !!   On the other hand, maybe you'll start a big trend for Jaw Gyms . . .  . ( Odd sense of humour, me.)  J
    • Juno-Irl-Dub
      Juno-Irl-Dub chris00938

      Posted

      Hi Chris, I just start it again for another 2 mins. and then switch it off when I'm good and ready . . .  J

       

    • alison28608
      alison28608 Juno-Irl-Dub

      Posted

      So far so good with the teeth. No problems yet. Definitely think prevention at every turn, so going to get one of these sonic toothbrushes on Tuesday.
    • chris00938
      chris00938 alison28608

      Posted

      Alison, Im probably taching my granny to suck eggs here, but as well as the sonic toothbrush I also use a Teepee brush between each tooth twice a day and also floss once a day, just to make doubly sure of doing my best:-)  I use a plaque deterrent mouthwash too, twice a day.  Still got the gum problem though!
    • kathleen65757
      kathleen65757 Juno-Irl-Dub

      Posted

      People are reporting the loose teeth on other sites. They are also saying they are in pain and being sick. 

      Hopefully, they are reporting their symptoms to the body that records such information.

    • alison28608
      alison28608 chris00938

      Posted

      Sorry to hear your gum problems continue despite all you are doing. I have no problems fortunately, but we can all benefit from being reminded on the importance of taking care of our teeth. Good luck for a result today
    • chris00938
      chris00938 alison28608

      Posted

      Thanks Alison.  I can only hope now.  He did mention possibly putting me on Cephradine, but I'm not sure how well that will work out because I'm allergic to Penecillin and apparently if you're allergic to that, your often allergic to Cephradine, but I'll try anything.  I only come out in a rash, not anaphylactic shock.  I'm just hoping when he sees it he doesn't say it the tooth should come out as he's previously mentioned.
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