Now I can add Osteoporosis to the list... @:-0

tjt6768
tjt6768 Member Posts: 12,170
edited 5. Aug 2014, 18:05 in Living with Arthritis archive
Just got the results of the bone density scan I recently had.. I do have osteoporosis in my spine, L2, L3 & L4. Also my left hip...
how joyous :roll:

I will make a GP appointment tomorrow to discuss the treatment they want me to have. Vitamin D, Calcium and a Bisphosphonate... I will have to discuss the calcium for sure.. I am not supposed to take calcium because I have chondrocalsinosis in both knees.. that'll be interesting..


Soooo.... I am a tad miffed... :roll:
e050.gifMe-Tony
n035.gifRa-1996 -2013 RIP...
k040.gif
Cleo - 1996 to 2011. RIP
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Comments

  • nearlybionic
    nearlybionic Member Posts: 1,899
    edited 30. Nov -1, 00:00
    Hi Tony
    Sorry to hear of the new diagnosis and need for more pills.
    I like the description `miffed` ! I bet you felt more than that really!! :wink:
    NB
  • Megrose489
    Megrose489 Member Posts: 776
    edited 30. Nov -1, 00:00
    Sorry to hear your news, Tony. I'm sure I'd be miffed, too. i hope the GP gets you sorted out with medication. Take care.

    Meg
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    hello Tony,

    The good news is that this condition can improve.
    I'm in the third year of a five year plan and my recent bone
    scan shows a positive improvement thanks to similar medication
    to what you mention, an improved diet and exercise. When I see
    my consultant in the middle of next month I hope to negotiate a
    reduction in the medication dosage I currently take.
    Hope all goes well with you.
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Blinking eck Tony (or words to that effect ) don't know what else to say but am sending some Nottingham hugs. (((()))) Mig
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thanks folks, I appreciate that...
    Ichabod, thanks for the encouragement. I have a very very dire diet, it is caused by the sulphasalazine.. I am going to do my best to improve that and my exercise regime, the one that does not exist yet :? :? :oops: :oops:

    I know it can be improved, I am just a bit, well, MIFFED OFF :roll:

    Thanks again. :)
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh mate. :( Oh this sucks - no wonder you are miffed. :( May I add the words peeved, vexed, irritated, dismayed, bewildered and affronted, all to be prefixed by 'slightly'. :wink: I recall that your diet is not that wonderful so that must be addressed - is the sulph providing any benefit at all? If not could it be dropped? Is the chondrocalcinosis still an issue? If so, how does it affect you? [[[]]] DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Oh Tony I am sorry to hear this,you need to talk to our Elnafin..she is so clued up on this, I know she tried one med and it didn't suit so now she is on another one
    I do hope she sees this...you take care and keep on having those holidays...x
    Love
    Barbara
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Tony

    Join the OP club. .....

    If you can get enough calcium in your diet that is much better than taking those calcium and vitD pills. The gp can prescribe you with a Vit D pill only. Do ask for blood test for Vit D. My gp was unaware of this until I mentioned it. If you are diagnosed with OP the blood test should follow automatically. If you spend a lot of time outdoors you may be ok regarding the Vit D as long as you do not always smother yourself sunscreen.

    When you said you had started to walk without the aid of the crutches I did not wish to rock the boat by congratulating you. It is more weightbearing which is just the exercise you need to be doing. As much walking as you are able to do. Even standing is better than sitting.

    I was not keen to take the Bisphosphonates and they did not agree with me ( I tried two from the same family). I am much happier on the Strontium Ranelate.

    It seems that all newly diagnosed OP patients are tried with the Bisphosphonates first - could be because they are much cheaper. ;)

    It is rather scary to begin with but knowledge is power and I have taught my GP a couple of things about OP that I hope he will pass on to other OP diagnosed patients he sees.

    http://www.nos.org.uk/page.aspx?pid=234

    This is a link to the National Osteoporosis Society. They have some quite good information and leaflets. The forum is not well run unfortunately but ok for information. There is also a helpline.

    The US site is much better: http://www.inspire.com/groups/national-osteoporosis-foundation/

    The drugs have different names but it is easy to find out which is which.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    So sorry to hear this. Hope your GP is able to come up with a treatment plan that suits you.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    DD.. The sulphasalazine definitely helps the joints along with the meth, not only that but it is the best thing I have tried for my IBS.. I couldn't believe how much better I was once on the sulpha... So I aint too sure about stopping that.. I barely eat each day and find sweet stuff easier to manage.. Bad, I know :oops:
    I guess it's something that I have to learn to do, force myself to eat.. Not that easy when you very rarely feel hungry, but I will try my best.. Thanks mi darlin :wink: As for the chondrocalcinosis, that affects me every day and is one of the biggest points of pain I have.. I was put on calcichew tablets yrs ago, again for the poor diet, but was taken off them once they realised all the calcium was going into the knee carteledge. ? So, that is a definate question to raise with the GP. I will try get in tomorrow evening, that way Janet can come with me as I won't even remember why I'm there, let alone what they tell me :?

    Barbara, thank you too hun. You are always there to support. Xx


    Elna, you have definitely given me some good links there and I will learn as much as I can about the condition. I must admit I know very little really..
    I am determined to walk as much as I can without the crutches etc.. I always walk slow and steady. Good really as I now know I have to be very careful not to fall... I am on very strong pain relief, fentanyl patches combined with paracetamol and naproxen.. I very rarely become drowsy though, I think that I have quite a high tolerance for these kind of drugs after being on them and similar for more than 20yrs..
    I have had a quick look on the internet, well, I say I have.. Janet has, regarding the other meds.. it will be interesting to see which they start me on..
    I had my bloods done just over a week ago, requested by the rhuemy.. I saw my gp monday and got thise results. Everything was pretty muchnok, said I was borderline anaemic but that could be the meds.. it was a test looking at my vitamin levels so I shouldn't need it repeating, but am happy to so if they ask... I have only just come off the two-weekly bloods for being on methotrexate lol..
    Thank you my dear, you have been very supportive and helpful :wink:


    Thank you too your sloshiness :wink:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Not good news I know, but like the others have said things can improve with the right treatment.

    I have osteoporosis in my spine and hips, at my last annual scan my hips had improved dramatically to the point they are only now borderline low but my spine has deteriorated further but at a slower pace than before, which is more good news considering the AS in the spine is what causes the bone density to drop.

    I hope you and your gp can come up with some sort of treatment plan that suites you. My treatment plan was tablets, diet and trying to spend at least 10 minutes outside daily. The diet part doesn't necessary have to be really healthy and you can get some quick fix/easy to eat items if you don't feel up to eating much. Ice cream, milkshakes, all sorts of cheese etc etc. I'm sure your doctor can tell you more.
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thank you very much As5567... Every bit of support means a great deal.

    Part of me expected the result to be honest, but only a very small part... I certainly feel like an old codger now, lol.. what with all the joint troubles and then being told at my last opticians I had early stage cataracts :shock: :lol:

    Fortunately I have a wonderful and supporting family and all on here too... I am sure things will be okay.
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Tony I'm so sorry to hear you have been diagnosed with OP, elnafinn has given the best information, I don't really know what to add to that other than you need to be more aware of everything all it can take is one trip or bang and boom you could end up in A&E!! I know some days I feel like 91 not 41!! But then I have goods days to counteract the bad ones! It good knowing your not alone having to deal with it, you have others on here who understand what your dealing with.
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thanks Bubster :D

    I went to see the gp this morning. Got some vit D/calcium combo tablets. I will take them till I see the rheumy. Then ask their advice on the Chondrocalcinosis thing. I have been prescribed Alendronic Acid 70mg to take once a week. I will take the first one next Thursday morning so it will be the morning I do my Methotrexate. It was too late this morning.

    We asked about how bad it was as we didn't really understand the score system. .
    It is significant in the spine. . Woohoooooo
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Welcome to the Crumbly Club :D

    I was diagnosed last year and have, since then, had one magnificently balletic crash to the ground (Concrete, of course :roll: ) with no broken bones at all.

    I take my Calceos and eat lots of oily fish, nuts and green veg but, every bit as important as this, is to avoid salt. It's everywhere, especially in fast food (pizza, burgers,) processed food and meat (turkey, ham, hot dogs), canned foods and breakfast cereals. I solve this by only having any of these occasionally to save time. I never use salt in cooking and never add it to anything. You soon get used to it. (Except on chips :roll: but I only have them about 4 times a year.

    I'm not sure it's a good idea to take the AA the same morning as the meth, though I know you're on injected meth so probably don't have any stomach issues with it. I chickened out of the AA.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thank you stickster :wink:
    I asked the GP about taking it on the morning I take the meth (around 16.00 for the meth) he said that should be fine.
    I don't eat much takeaway stuff. Apart from the occasional FKC lol.
    I will take your advice about the salt though.
    I'm out and about so will be back soon
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Glad to hear you have a plan and hope it works for you.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    It never rains but it pours!

    Hope you get this sorted out and everything settled as much as it can be, as soon as possible.

    Take care of yourself Tony.

    GraceB
    Turn a negative into a positive!
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thank you sloshy :wink:

    Sticky, I love nuts, but they bind me up a tad, and on top of the fentanyl and naproxen I really don't need more bunginess :lol:
    I'm not keen on oily fish and don't do greens :oops: in fact I don't each much veg at all.. I guess I'm gonna have to try and change my bad habits....


    Thank you Grace, I guess it's another tick on the list of ailments my body seems intent on collecting :roll: :lol: I do hope that it stops soon... :x
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    What about home made fruit smoothies? I sometimes make them for breakfast, you don't need an expensive smoothie maker,, I use a stick blender and mix a banana with some berries and plain yogurt. I use the cheap bags of frozen fruit for this and put a portion in a jug to defrost overnight. I find it hard to always manage my five a day and get enough diary so this gets me off to a good start and because you use all the fruit you get the fibre too.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Good idea hun, thanks.. I do love fruit and yoghurt.. :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    tjt6768 wrote:
    Sticky, I love nuts, but they bind me up a tad, and on top of the fentanyl and naproxen I really don't need more bunginess :lol:
    I'm not keen on oily fish and don't do greens :oops: in fact I don't each much veg at all.

    Don't do salted nuts and drink plenty of water with any others.

    As for veg, why not get a book of juicer recipes? Many use veg as well as fruit. My juicer came with one such book but I never use the juicer (which was a gift) as I like the whole of the fruit and veg :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Home made soups are good as well. Quick summer one. 500g frozen peas,, simmer in about 1 1/2 litres of veggie stock for about 15 minsutes, add a bag of washed spinach or watercress and wilt down, blend. Freezes well.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Thank you both girls :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Tony

    Out of interest, have you done the FRAX test?

    http://www.shef.ac.uk/FRAX/tool.aspx?country=1

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.