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Date: 08.01.2016
From: Sandy

Subject: osteoporosis

Hi, I've not posted on here for ages, I've just been diagnosed with osteoporosis (courtesy of the rheumatoid arthritis and long term steroids I presume !) ...I just wondered if anyone else has had this diagnosis and if so,how do they find the medication ? Ive been given Alendronic acid and Adcal - D3 caplets ... Im already on so many meds for the RA (abatacept,methotrexate,hydrochloroquin,oramorph to name but a few!) I,m worried about more side effects !... and what can I expect long term with this diagnosis ... if anyone else has this I really would appreciate your input...I,m so fed up with yet another label !!
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Date: 14.01.2016
From: Patricia

Subject: Re: osteoporosis

Hi Sandy - i am so, so sorry to hear you have been diagnosed with osteoporosis. I empathise with you because i felt just like you when i was diagnosed two years ago. I have also been on long term steroids, in fact am still on them although at a lower dose now, and am pretty sure they have been a contributing factor. I didn't take the calcium/d3 i was prescribed and instead take a supplement called AlgaeCal Plus (i have no affiliation whatsoever to this product - just did a lot of searching). It is an algae based calcium so better absorbed apparently with lots of trace minerals to help and K2 which is meant to help the calcium get into the bones. I am not due a dexa scan until April time (hopefully) so i don't know how well the supplement has done but i haven't had any mishaps bone wise thankfully. I don't take the weekly Alendronic Acid - i get a yearly infusion of Zoledronic Acid (Aclasta infusion). It is the same drug really - a bisphosphonate - but i somehow felt happier taking that than the weekly medication. I guess they both have their pros and cons. I wonder if the yearly infusion is something you could ask your rheumatologist about? Is he/she easy to talk to? To be honest when i was first diagnosed i was gutted :-( Like you i didn't want to take anymore drugs BUT when i came home and thought about it i realised i couldn't just wait and do nothing. I felt doing nothing was too risky Also like you i need to take oramorph for the pain of RA and i find it tricky to do any meaningful exercise. I do try to take a 20 minute walk a day to help but it is such a small amount really. We can only do the best we can under the circumstances. We have been given a rough blow for sure. I try to take each day as it is - try not to think too much of the future - and am constantly trying to clean my diet up and failing! Being diagnosed is a shock to say the least - i really feel for you - but all i can say is the shock gets less and less day by day. RA and everything related to it is hard to deal with but one thing i do know it shows us how strong we are mentally and emotionally being able to deal with this level of pain on a daily basis. Sending warmest wishes to you and if you need to know anything else please just shout - i will hear you <3 xxxx
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Date: 14.01.2016
From: sleek fox

Subject: Re: osteoporosis

The National Osteoporosis Society is really helpful. I have osteopenia, which is the precursor. There is quite a lot of info on their site, including exercises you can do. They will also send you info, if you like.
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Date: 14.01.2016
From: Patricia

Subject: Re: osteoporosis

Sleek Fox - thank you for the info - very helpful for me too :-) Hope all is well with you x
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