Hey Everyone, just a question? Does anyone have back pain (low or otherwise) linked to PSC. I have had slight back pain over the years but it seems more intense since PSC has progressed. I asked my doc but he just ignored it. I was thinking there maybe a link to toxins going back into the kidneys? The pain has gotten worse when it does happen. Pretty athletic and exercise regularly. Been focusing on back PT but doesn’t seem to have helped the bad back pain, where I can barely stand and have trouble walking. Any help or suggestions would be appreciated.
How is your spine? Have you had a DEXA to check bone density? I am a dude and was diagnosed with osteoporosis in my lower lumber when I was 31. PSC cholestasis was the culprit. IBD and steroids can also contribute.
GlasshalfFULL, is the lower back pain all the way across or more concentrated on your right side? Do you have any pain that radiates from your liver around the right side to your back? If so, this was always an indication to me that I had blockages and needed an ERCP. It was a sure sign my bilirubin was up as well. Now that may not be the same for all, but that was my experience.
I have had PSC for 20 years and for the last 10 years I have horrible back pain but the doctors are certain it is spinal stenosis. PT helped a little but I lost 25 Lbs and that got rid of about 85% of the pain. No one ever connected my pack pain to the PSC as the scans were very obvious.
OK, this may be a long shot, but do you take Ursodiol? If so, you may be prone to UTIs, which I just found out (helps if you read the information from the pharmacy). I have take Urso for 15 years, and didn’t make the connection as I get frequent UTIs.
Not sure how my spine is, no scans or anything. Was checked for RA several months ago and everything was negative, they said no need for bone density. My hep also said no need for bone scan. No IBD or steroids for me. Next step would be to get checked out by a spine and orthopedic doc.
Concentrated back pain is always concentrated on the left or right lower back but not necessarily linked to the liver pain. Had a poorly done ERCP a few months ago. Billi doesn’t seem to be up, at least not more than normal.
I do take urso and have also thought that the pain may be linked to kidney infections or bladder infections. A couple years back I had some groin discomfort which made me associate it with those but not so much anymore.
I had three heps drop the ball for 12 years before my osteoporosis was found. This diagnosis likely could have been avoided if, at the very least, my vit D levels were checked at some point.
Per the ACG PSC Clinical Guidelines:
“Metabolic bone disease is a common complication of chronic liver disease, especially with chronic cholestasis. Osteoporosis has been reported in 13%–60% of patients with cholestatic liver disease.”
In their Summary of Recommendations:
“Patients with PSC should undergo BMD [bone mineral density] screening at diagnosis with dual energy X-ray absorption at diagnosis and repeated at 2- to 4-year intervals.”
“Patients with advanced liver disease should be screened and monitored for fat-soluble vitamin deficiencies.”
Similar recommendations from the AASLD PSC Practice Guidelines:
“We recommend bone density examinations to exclude osteopenia or osteoporosis at diagnosis and, thereafter, at 2-3 year intervals.”
I’m not suggesting this is necessarily what is going on here, but I do strongly recommend that you push your hep about getting vits ADEK checked as well as for an occasional DEXA scan to check bone density.
A good chiropractor might be able to help if it is a bone issue.
As JTB recommended, all PSCersi need to get your levels checked for vitamins A, D, E and K. These vitamins are not absorbed well in PSCers.
Low vitamin D will lead to bone issues. It is one thing for a scan to show bone issues, but that is not a predictor. Knowing your vitamin D level will help you adjust if it is low and that can help head off bone issues at an early stage.