PSC seems to affect the health of our bones. Compared to the general population, people with PSC are more likely to have:
- osteopenia (decreased bone density) or
- osteoporosis (a condition that causes the bones to become weak and fragile and more likely to fracture or break) 70,71.
Osteopenia and osteoporosis affect both men and women with PSC.
The three risk factors 71 for developing osteoporosis in people with PSC are:
- being aged 54 or more,
- having a body mass index of 24 kg/m2 or less, and
- having inflammatory bowel disease (IBD) for over 19 years is related to the presence of osteoporosis.
People with PSC lose bone mass at an average rate of 1% per year, which is significantly higher than in people without PSC 71.
All people with PSC should have an osteoporosis risk assessment upon diagnosis of PSC 2,4,58,71,72 with follow up as per national guidelines for osteoporosis. The authors of the study mentioned above 71 recommend bone density measurement:
- at time of diagnosis of PSC
- every 24-36 months with normal bone mass and short duration of PSC-IBD
- every 6-12 months with bone mass in range of osteopenia (especially those with long-lasting PSC-IBD)
Bone density is measured using a DXA (dual energy X-ray absorptiometry) scan.
You will be asked to lie on a bed and stay still while the scanner, a kind of X-ray machine, moves over the different parts of your body being scanned. The procedure is painless and will take approximately 15 minutes.
Depending on your results you should be offered dietary and lifestyle advice and treatment in accordance with national osteoporosis guidelines.
There is currently no data on the prevention and treatment of bone disease in people with PSC.
However, the following general recommendations are suggested 71:
- Increased physical exercise
- Discontinued alcohol intake and smoking
- Diet high in calcium and vitamin D (or supplementation if deficient).
EASL Clinical Practice Guidelines: Management of cholestatic liver diseases recommend considering supplementation with calcium and vitamin D in all patients with cholestatic liver disease 4.
BSG/UK-PSC Guidelines Recommendation 19: all patients with PSC should have a risk assessment for osteoporosis. Treatment and follow-up once detected should be in accordance with national guidelines for osteoporosis 58.
Warning – please do not make any changes to your diet or exercise regime without first consulting your doctor.
We are facing a serious funding crisis, yet people with PSC are relying on our services more than ever and we are continuing to provide support and information throughout this uncertain time. To help fund our vital services we need your support more than ever. Your contribution, however small, will go a long way. Thank you.