Dexa Scan results

I'm surprised when they make such a fuss about people taking the stuff when their scans are far nearer normal than that - but also very pleased for you. If you are on pred I understand it should be 2 years though. How all very strange - why did your GP waste and appointment to "discuss" it?

Needed the Rheumie to diagnose me. The GPs said it wasn't PMR. She also had to give me a useless tapering schedule.... 

i raised that with GP when I went back to see her after Rheumatology and she said that 2 years would be too soon, that the changes wouldn't be evident by then.

i decided that if I was off steroids within the 5 years I would discuss stopping the AA, but I don't really know if that's the right approach.

oh dear, it is so difficult...

Um - earlier than 2 years is too soon but 2 years is more usual than 5 years. Where did you find this GP? I'm having my faith in the NHS and doctorsin general sorely tried today (not just you).

Thank you for the vote of confidence - that isn't what someone has said about me today!

So glad to hear you have an alert GP and a good rheumy too. Are you in the UK? It doesn't sound like it (since you use brand names) but I'd be delighted if I were to be wrong about that!

How do they use the Forsteo (always makes me laugh, our local beer is Forst   ) ? Did they repeat the dexa to see if the bone density had achieved an acceptable level or is 1 year sort of standard and then see how you go? Are there noticeable side effects? 

Hi there Eileen,  I live in Ireland, not UK. Not sure what you mean by " how do they use the Forsteo".  I injected it every evening into my thigh. I had the 'pen' and each month and would use a new needle each evening. They are really fine (less than an eyelash hair) and it was not sore at all.. Each pen was pre-loaded with 28 'shots'. It is an expensive treatment (here 750 Euro) but was covered by the Dept. of Health. The course of treatment with this is max. 2 years - my doc. suggested one year now and keep another year "in the arsenal" for the future. I had no fractures but because my OP was so severe this was her decision - it's most commonly used for those who can't tolerate the bisphosphonates or who, despite taking  them, still fracture. The main side-effect I experienced was a dragging tiredness but was otherwise OK. I've found that if you think too much about side-effects you'll drive yourself crazy!  By the way I'm female and 63. Good wishes from Dublin!

Sorry, intended to add that DXA scan to be done in the summer - that would be after one year of Forsteo and 9 months apx. on Actonel. 

 

No, I didn't express it very well. I meant do they give a fixed period of Forsteo and then check how the bone density has changed before the next step - you've answered the question in that it is Forsteo plus actonel and THEN repeat dexascan, keeping some of the allowed Forsteo in reserve. 

I know alendronic acid is cheap (not cheerful) but if they did a dexascan in the UK and THEN  made the decision as to what was needed it would save a lot of polymedication and upset. It is the blinkeredness of some UK doctors I find concerning. A friend was found to have very poor bone density and the rheumy insisted on a bisphosphonate despite a history of gastric bleeds. After the inevitable happened the rheumy decided it should be strontium ranelate - contraindicated by her history of DVTs and familial cardiac history. In the meantime she's been on nothing for a couple of years.

Is the tiredness the Forsteo or the pred/PMR I wonder? Some people are never rid of the fatigue until they get off pred.

Well Eileen, I`m glad I have read all the above posts with valuable info...I have been sent for, to "discuss" Dexa scan results, and can`t believe the differing opinions of doctors/Rheumy`s on here, where does that leave us patients....no confidence who is right!....

Also I have a stinking cold, and can`t believe how drained I am, but having read other posts, have upped my pred to cope...I persume this is right, I am trying to lower from 15mg, but will have to do it very slowly, because I am feeling achey already....I am dreading the doctor wanting me to take "bone builders or whatever" because I just can`t tolerate them....will be interesting, to see what is suggested by her!  Didn`t know an injection was available though, maybe not be where I live in East of England, here we go again!....

If you need "bone builders" beyond calcium and vit D then there is a hierarcy of substances, ranging from cheap as chips alendronic acid to denosumab. You have to work up through them of course, ruling each out. But at least start with the contraindications - and make sure you are safe with each before you even try them. Then, if you have problems don't soldier on, insist on being heard. 

If you aren't already on omeprazole that will almost certainly be dished out - and it can cause osteoporosis on its own. Ranitidine (Zantac) is better in that regard and has fewer unpleasant side effects while doing as good a job.

You may need more pred with a severe cold but it is probably better to try to manage on the current dose and keep extra for more serious problems. But now you have PMR AND a cold - you're proper poorly as my paramedic  daughter would say!

You can also have bisphosphonates as an injection which reduces the gastric problems a bit.

Hi, it seems that the advice for anyone (your friend) with gastric problems is' no bisphosphonates by mouth' and to opt for yearly infusion (Aclasta) which takes 15mins., or Prolia (not a bisphosphonate and works differently), which is injected by GP every 6 months. Both of these are great to ensure compliance as I think research shows that up to 80% of patients STOP taking their osteo. meds within a year of being prescribed! Really high. Strontium ranelate isn't that easy to organise (sachet every night and no food for 2 hours) but it does seem to work. As you say there are patients it won't suit. . . It seems the cheap and not cheerful (!) Alendronate and Actonel are the tried and tested work horses, with a good safety profile and that, generally, those with the more severe osteoporosis improve best on treatment of any kind. Like yourself, I can't see why any doc. would put a patient on an osteo treatment without a scan first unless their history showed multiple risk factors for OP (family history, thin, smoker, big drinker, anorexic in the past, early menopause, steroid use etc.) Finally - Yes I know that tiredness is a much reported side-effect of Pred. but also of Forsteo.Being on both, I was lucky enough to get a double dose (!) and felt I improved a lot after finishing the Forsteo. It'll be another couple of years before I (hopefully) stop the Pred. so maybe then I'll amaze everyone and myself with my limitless energy . . .. 

Ah yes Juno - but she lives in South Wales and has a useless GP and an even worse rheumatologist. It takes months to see a specialist and then they are desperately trying to save money by cutting corners. England NHS is bad at present, Wales is worse. And they have been brain-washed all over the UK that pred is desperately dangerous to bone density and everyone will fall to pieces without AA - brilliant marketing by Big Pharma into the bargain. 

And thanks - you have answered my questions/suspicions and the facts are filed for future reference! I know all the options pretty much off by heart after 5 years of answering questions about it  

Your friend should keep pushing  for once- yearly Aclasta infusion (Zoledronic Acid). Just looked it up - costs £ 250 apx. It's been around for some time. By the way, research has shown that the most obnoxious, awful and relentless patients get the fastest treatment - it's called the  " sort out- this-dreadful- woman- and -get- her -out- of -my- hair" phenomenon. Seriously though, sometimes being a patient patient just isn't enough.  . . 

Oh we know, we know! We both worked in the NHS...

Thank you so much for this Eileen. I just a very unpleasant encounter with my GP this week. I have had some symptoms of gastric irritation, I had an ulcer of and on years ago when on Feldene for RA, so I know how the early symptoms feel. In those days I was prescribed Ranitidine which did the trick, so I went and bought some. I had only needed it a couple of times in the week.

Told GP and she went to give me script for Omeprazole.

Much to her annoyance I said I didn't want it because of the possible side effects. Eventually got script for Ranitidine! However, it is double the dose and she wants me to take it twice a day. Angrily saying this is necessary because of my insistence on staying for so long on such a large dose of Prednisilone..... My stomach must be protected. I am currently down to 11mg at last and hope to start moving to 10 in a couple of weeks.

I feel vindicated in sticking to my guns re Ranitidine. Should I do what she says or take it when necessary?

I won't make an appointment with her again. Will try to find a more understanding doc on the practice.

"this is necessary because of my insistence on staying for so long on such a large dose of Prednisilone" - as if any of us CHOOSE to be on pred! 

I have NEVER taken a PPI, apart from a few days in hospital without me being asked. I have a couple of tablets left - is that an insurance policy? I had no problems at way above 10mg - and lots of us have used yoghurt very successfully.

I'd be inclined to take a normal dose of ranitidine regularly to be honest if you have had symptoms - you don't HAVE to use all the tablets! Maybe the pharmacist can give you more normal dose tablets if you ask nicely so you can adjust the dose? And maybe taper it off once the symptoms are well under control? With yoghurt?

And no - I wouldn't want to see someone as unwilling to see other people's views ever again. After all - she'd have had something to complain about if you said you wouldn't take ANYTHING. Wonder what she gets paid/given to prescribe omeprazole - thought that was banned these days.

Pharmacist says to cut them in half... So I will. 

Fair enough. Do you have a pill cutter? Saves cut fingers