 Posted 03/01/2012 19:53:57
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Hi everyone.New to the forum so I thought id introduce myself!I am 40 years old and have had osteoporosis since i was 29 .Mine was unfortunately caused by Cushings syndrome,and a lifetime on steroids for various atopic diseases, mainly severe brittle asthma .I have broken my wrists 9 times and am to undergo my 5th surgery next Thursday.I am having a replacement ulnar,as it is so damaged from all the fractures.Blooming plaster again!!The worst thing now is that my body is now not making its own steroids so i am reliant on taking them for life,Addisons disease.This unfortunately will accelerate my bone loss . I try and keep as active as possible,but the cushings has affected my muscles really badly to which restricts my mobility.I have so far received 2 aclasta infusions(annually) and to date haven t had too bad side effects.I am due my next in march.I went onto Aclasta as i suffered from severe indegestion,and had a fundoplication operation to try and correct this.I was previously on accolate and calcium. Osteoporosis is no fun at all,but I find it easier to cope with knowing there is a lot of useful information about and forums like these. HI EVERYONE!!! CLAIRA
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Posted 03/01/2012 20:48:13
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| Hi Claira Welcome to the forum. You're right in thinking there is a whole lot of helpful information on here. We all gain a great deal of help from reading the posts and learning about this cruel disease. Have a good look round and ask as many questions you like. The NOS helpline is good - it's helpful if you want to talk on the telephone to a real person (a nurse). We will be pleased to give you support. Keep smiling you're in good company. Amelie
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Posted 04/01/2012 14:42:33
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Claira
How do you do it? Keep so positive. I do admire your spirit.
Although I do not know anything that could really help you - all I do know is that I have got enormous amount of courage to query my docs from being on this site, and from two books I have read. Dr marilyn Glenville How to prevent, treat and reverse Osteoporosis which is a great intro into how your body works and how to help yourself. The other book is Lara Pizorna's Your Bones - great on exercise and supplements. Lara is also very helpful and posts on the US website for OP.
SarahW
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
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