About a year ago I was diagnosed with osteoporosis. It’s a common condition among people with EDS as joint pain can make it difficult to exercise and inactivity can lead to weak bones. I wrote a blog post at the time which explained the issues involved called ‘Dem Bone Scans’. Since being diagnosed I’ve had further bone scans and blood tests to monitor the problem and help form a treatment plan.
One of the blood tests found I had a low P1NP score, which is a bone turnover marker (P1NP = total procollagen type 1 N-terminal propeptide, in case you wondered 🙂 ). Bones are constantly re-growing to supply the body with calcium and to repair microscopic damage. The entire skeleton is replaced every 10 years. Bone turnover markers are a way of assessing this process. So a low P1NP score means my body is re-growing bone at a low rate, which isn’t good. My P1NP score was 21 mcg/L. Typical adult male values range from 22-87 mcg/L.
A low P1NP score is common after a period of starvation, but it usually increases when nutrition improves. I had a period of 3 years when I wasn’t getting enough calories and became very thin. However that ended over two years ago, so my P1NP score should have returned to normal.
Many of the drugs used to treat osteoporosis can cause a person’s P1NP score to reduce as a side effect. At a clinic appointment six months ago the rheumatology consultant told me I was a poor candidate for drug treatment as it may lower my P1NP score even further, so the drug could make matters worse. Consequently, since being diagnosed with osteoporosis, I haven’t been receiving any treatment.
I met with the rheumatology consultant again last week. He told me my latest bone scan, done in February this year, showed improvement in the bone density of my spine (-3.1 to -2.9 SD) and also in my hip. This is apparently a ‘significant’ gain over six months without any medicinal help. My P1NP score has also improved (from 21 to 27 mcg/L). Both these improvements were unexpected. They could possibly be due to better nutrition, although it was over two years ago that my nutrition improved. So it’s something of a mystery…
Whatever caused the changes they are very good news and consequently the consultant recommended continuing without any drug treatment. I’ll have another bone scan in 12 months. Hopefully I’ll carry on improving unexpectedly and without reason.
Due to these surprising results I’ve started to hope for other miraculous improvements: fewer grey hairs would be nice, being able to drink beer again, and the six pack I had when I was 21. ?
It was Fosters and Carling and Boddingtons and Caffreys and Guiness and Cadburys and McDonalds and curry. And much fun in the making… ???????????????????
How often do you have DEXA scans Ceri? I’ve only had one in 2010 and I thought with EDS you were supposed to have them every 3 years – must check this with my GP if I ever get to see her again (currently unable to get an appt as she is booked up for the next 2 months!).
Hi Jak,
I don’t know if there’s a recommended gap between scans, sorry. My first three scans were 5 years apart, but once my bone density was found to be low they’ve been much more frequent. My last three scans have been 6 months apart.
If you ever get to see your GP again it would be worth asking for another scan, as they can effectively treat low bone density (unlike most EDS related problems ?)
About a year ago I was diagnosed with osteoporosis. It’s a common condition among people with EDS as joint pain can make it difficult to exercise and inactivity can lead to weak bones. I wrote a blog post at the time which explained the issues involved called ‘Dem Bone Scans’. Since being diagnosed I’ve had further bone scans and blood tests to monitor the problem and help form a treatment plan.
May 1, 2016 @ 10:18 pm
Was the six pack fosters or carling when you were 21?!
May 2, 2016 @ 1:50 am
It was Fosters and Carling and Boddingtons and Caffreys and Guiness and Cadburys and McDonalds and curry. And much fun in the making… ???????????????????
May 2, 2016 @ 10:37 am
How many skeletons do you think I have produced during my lifetime?
May 3, 2016 @ 3:12 am
Theoretically 7.3 – However, considering how overworked you are by your children and grandchildren, you’ve probably worn out a few more. ?
May 4, 2016 @ 8:51 pm
How often do you have DEXA scans Ceri? I’ve only had one in 2010 and I thought with EDS you were supposed to have them every 3 years – must check this with my GP if I ever get to see her again (currently unable to get an appt as she is booked up for the next 2 months!).
May 5, 2016 @ 2:24 pm
Hi Jak,
I don’t know if there’s a recommended gap between scans, sorry. My first three scans were 5 years apart, but once my bone density was found to be low they’ve been much more frequent. My last three scans have been 6 months apart.
If you ever get to see your GP again it would be worth asking for another scan, as they can effectively treat low bone density (unlike most EDS related problems ?)