Hi all - wondering if anyone has been diagnosed with osteoporosis as a result of PSC? Thanks
I was diagnosed with osteoporosis when I was 31. It was very much preventable, but my doctors and I hadn't done our homework.
Prior to my transplant hep who did catch the vitamin deficiency, I had 4 gastro/heps over 13 years and not once did they check vitamin levels or request a bone scan. Everyone - don't assume your doctor is covering all the bases. If they aren't tracking fat soluble vitamins, ask them to do so. Every other year or so request a bone scan.
My osteoporosis has improved to borderline osteopenia over the last year. This is likely attributed to either the supplements I am taking each day (2000iu D, 600mg calcium, MCT oil), or to the Vanco treating the PSC.
Thanks jtb - great news of your improvement! I was just diagnosed (age 32) with a score of -2.5 which I understand has ticked me over from osteopenia to osteoporosis. The scary bit is that I would never have been sent for a bone density scan had I not experienced some post-regnancy weight bearing issues and requested a second opinion from a rheumatologist. My gastro sent me to the first rheumatologist to check if it was ankylosing spondylitis. He does check my Vit D and I've been taking 1000iu D for years. Have also just started pilates but under physio supervision and am trying to get into a walking routine.
I completely agree with you that this is something every PSCer should request from their Dr. I wish I had known earlier but it's now about stopping progress.
I have not heard of MTC oil - what is this / does your gastro ok it?
Do you have any joint pain? I've noticed the past two months I have stiffness in my fingers upon waking but it goes away as soon as I get up and start moving. Really don't want any other issues :)
As PSC progresses and bile flow becomes restricted we lose our ability to absorb long-chain fats (most fats). This also means it is harder to process fat soluble vitamins through diet. Short and medium chain fats can still be absorbed as they do not require liver bile to be processed. The problem is that these fats are pretty rare. The best natural source is coconut oil (~70%). MCT oil, as the name suggests, is 100% medium chain fats. My hep is okay with using MCT as a supplement and it is actually recommended for patients with PSC/PBC:
I typically add a tablespoon to a meal. It is tasteless but is oily and may take some getting used to so I recommend starting small. It is absorbed very quickly so take it close in time with the fat soluble vitamins you are trying to supplement. You can't cook with MCT oil (low flash point?); I'm not sure if you can cook with coconut oil.
My osteoporosis appears to be limited to my lower lumbar and I don't have any pain/symptoms despite imaging showing noticeable compression. Without the bone scan I wouldn't have known about the problem.
I just got diagnosed with osteoporosis. I was asked by my doctor to take reclast by IV. I 'm a bit scared to go this route. Has anyone tried this medicine and how does it work