Hello everybody. First post here. So I have a question as I have been on a mission to find out if these issues I am experiencing are related to PSC or not. A little brief background. I was diagnosed with PSC in 2015. I had a MRCP done that showed several small strictures and at the time my ALT and AST was in the mid 400s. 5 years later and my AST and ALT are in the low 100s and my last MRCP 6 months ago showed no signs of strictures or anything. During this whole experience I have had these weird cold sensations almost like when you get taped on the back and for a brief second your adrenaline spikes. My scapula also is extremely stiff all the time. It’s like my muscles in all my upper body are extremely stiff. It almost seems like stress but I never had this issues until around the time i got PSC. Also my sleep quality is very poor and I am fatigued. I guess I am just wondering if you guys experiencing these symptoms even tho you are not necessarily at a late stage in the progression?
Welcome and thanks for your post. I’m glad to hear your MRCP results looked so well this past time. PSC progresses in each patient at different rates. For many the progression is quite slow yet for others it can move rapidly. In my case I think I had PSC for a number of years but didn’t realize it until it really started showing up with weight loss, itching, etc.
I can say that joint pain and stiffness are things I experienced with PSC. Make sure you are getting in at least 30 minutes a day of exercise. Nothing extreme just simple walking at a good pace or whatever exercise you enjoy. In regards to your sleep quality you may be experiencing sleep apnea. It was discovered in my case during the time I had PSC. My wife noticed I stopped breathing at night and then would jerk the bed which would wake her up. After a while she observed me at night some. I also had irregular heart rate show up during this time. I went through a sleep study 3 times at Duke before they got just the right diagnosis and proper machine for me to sleep. After being on my VPAP machine for a while all my heart issues went away and I slept so much better. I’d certainly have that checked out. It could very well be a cause for what you are experiencing.
PSC 2011 / Liver Transplant 2015
Thanks for the reply mark! I did get a sleep test done about 3 years ago with no issues at the time, oddly i sleep better then normal the night i did that test. lol. I will look into doing another sleep test whenever they become available. Did you perhaps get cold sensations that pulse throughout your body? It’s driving me nuts.
It seems pscers get different symptoms. I had the fatigue, itching and rotten sleep, but that was likely from something else. There was the occasional ruq pain as well.
There are other, more serious symptoms I am glad I never had the displeasure to have. I am not sure to what degree the sleep deprivation is due to psc. Due to itching, yes, but just by itself, not sure.
Hey Brad, Thanks for sharing! I’m on a bit of a mission as well, to determine what symptoms are psc-related. I initially realized I was ill during a particularly bad flare up of chills and fever and intense RUQ pain that started while living abroad and lasted several months. That subsided for some time but returned periodically after which I was diagnosed with PSC years later. Currently I’m quite well but experienced ~5 months of flare ups again last year where my major complaint was intense pain just under my shoulder blade on my back and around my ribs on the front, both on my right. When I go to the hospital during a flare my AST can be >500 but even a day or two after, they’re almost back to normal. I’ve had countless blood cultures while I had a fever but never any evidence of cholangitis. Fast forward a few more months, I’m quite well now, but whenever I bring up these flare ups and my daily pain to my doctor, he basically suggests that at my stage in the disease I shouldn’t be getting pain and that it’s not psc-related. I’m stuck in a bit of a limbo rn because no one is sure what to do for me, but I’m more than confident it’s not a psycosomatic symptom. Interesting to hear what other folks experience when addressing pain with doctors.
What you are describing is exactly how I felt when I had a duct blockage and needed an ERCP. Bilurubin was always high then too.
Thanks Mark, That’s what I figured too, like the gallbladder working against the blockage or something. But ever since moving to a new province 3 years ago I haven’t had and balloon dilations or stents put in. For now I’m fine which I’m grateful for, but it’s weird that this seems like a pretty regular experience for PSCers but the docs I’ve spoken to seem to think the symptoms aren’t PSC related
I get this too!