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Friday, 4 January 2013

RA and Osteoporosis: "I Leave That To The Bone Docs"

The title is a quote from my rheumatologist when I asked him about the choice of medications for osteoporosis.  He wasn't ignoring the problem, just referring me on to another specialist for the osteoporosis, which is not part of his expertise.

       
                                                                                                 
I found this humerus

Here's the history: After 20 years with Rheumatoid Arthritis (RA) my GP sent me for a DEXA scan. It was used as the baseline and showed I was well below normal bone density. My GP doctor told me to take calcium supplements and we'd see what happened. Over the next three years even with calcium, vitamin D, and hormones it just kept dropping.  In that period I even  exercised!  When I went to the osteoporosis clinic they reviewed my diet for natural sources of calcium, kept me on the HRT, and upped the calcium and Vitamin D.



The picture is from a blog: http://www.kksphotos.com/blog/ which has a great series of posts on Bones and Hormones from an Osteoporosis Educator. You can see what bone density means by comparing the two views.
                                                                    
When I went back a year later my bone density had plummeted to the level of actual osteoporosis, not just osteopenia.  At that point they prescribed a bisphosphonate - Fosavance.  I took it weekly for the next four years and every year the density improved.

When they decided that the time had come to stop the prescription I protested because I was afraid that it would drop again.  The doctor said adamantly that they don't treat bone density now: They treat falls risk. One year and one scan after stopping the bone density drug, my density has gone up yet again and is a little better than normal for my age and better than the baseline.



                                       Don't take it from her. Smoking is bad for your bones.

That improved score leaves me wondering.  I have read that osteoporosis is systemic, so if the bone density goes up does that mean I no longer have that condition?  I will be looking for that answer.

It is also worth noting that during the last 5 years with the improvement I have been taking a biologic drug and also have stopped drinking soft drinks.  Maybe that also helped a little.

Later comment: 
What I did not even touch in this post was the anger I felt that I had not been informed by healthcare professionals during my first 20 years with RA was that on its own RA is a risk factor for osteoporosis. The basic advice should have been to take calcium and vitamin D and try to exercise even though fatigue and pain made it difficult. I know doctors are busy but this is something that should be covered in a rudimentary hand out for patients with musculoskeletal health problems.






                                              
                                                  

2 comments:

  1. Hooray - I finally figured out how to get the posts emailed to me. it was staring me in the face all the time, of course.

    I wonder about osteoporosis. I was supposed to go on HRT after my emergency hysterectomy over 4 years ago, but I wasn't prepared to go that road after terrible experiences with the Pill. I haven't even thought about getting a bone density test. What does it involve? Do you have to ask the doctor for it?

    Take care,
    Jane

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  2. I'm glad you figured out how to get notifications. I am slowly learning more about blogging. Now I can add links also. Feel free to suggest improvements.

    It is easy to have a bone density test (DEXA scan) You lie down and the machine moves. They only measure the hip at the femoral neck and 4 levels in the lumbar spine. The first one is your baseline and they compare it to what is normal for your age and how you compare to a person with ideal bone mass.

    The doctor does have to send you for the test. In Ontario now you can only have one every three years. So it will depend partly on your age

    There are ways to get very small amounts of hormones. Maybe that would work? I heard Dr Ann Parke speak at a Sjogren's conference. She has theories about Sjogren's and hormones.

    In the meantime I am sure you are well aware of the need for exercise, calcium and vitamin D (sigh).

    Nice to hear from you
    Annette

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