I was diagnosed with PSC in 2014. A few months prior to that I was diagnosed with UC.
I started on Remicade in Oct '16. One infusion and I was sick with 101+ fever for 10 straight days. GI doc started me on Entyvio after that.
Just this past week I’ve been experiencing a level of fatigue that far surpassed any other fatigue I’ve had since my diagnosis.
I haven’t been to my GI or hepatologist yet. GI is this coming week. Hepatologist appointment I’ll be setting up later today.
In the interim, I’ve got some major concerns. So far my MELD score has been ‘non existent’ as per hepatologist. Is my extreme fatigue due to UC or PSC? Is the fatigue a sign that either disease is advancing?
I have dropped weight. Not trying to, but it happened. I do swim a lot. So my activity level can be considered higher than average. Due to the fatigue I have stopped swimming this past week though. Just can’t pull myself together to do it.
Any guidance, input or advice would be greatly appreciated.
Thanks and good luck to everyone.
Russ
Russ,
Thanks for your post. Sorry you haven’t been feeling well recently. Fatigue is par for the course for PSC patients. Do try and get some exercise in daily if possible, even if it’s just 30 minutes of easy walking. Will pay off in huge dividends come transplant time if you ever need one.
As far as your hepatologist saying your MELD is non-existent, I would have concerns with a statement like that. Do you have copies of your recent labs? You need to know your MELD score as a PSC patient. That’s a very important number I tracked very closely through the year I had PSC. It’s easy to check your MELD. I would do it each time you have labs. Go to this link and input the numbers.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Fatigue is an indicator of something going on with your PSC. Getting a good set of labs will show more. Have you ever had an ERCP to evaluate the state of your bile ducts? Do you know if you have large duct or small duct PSC?
I wouldn’t give up on swimming completely. You just need to cut down on the intensity. Not a competition type exercise but just getting some good easy exercise will help. The goal is to maintain good core muscle strength as transplant surgery is a big surgery and being in good shape will help. Do let us know of any further questions or concerns and we will endeavor to help.
Mark
PSC 2011 / Liver Transplant 2015
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Mark,
Thank you for your invaluable insight.
My LFT’s are done at a minimum of three to four times per year.
Alk phos varies widely. Typically 275-390. Been as high as 672 when first diagnosed.
ALT & AST range 30-90, rarely slightly over 100
Total bilirubin .9 pretty consistent. Never out of range.
My hepatologist has consistently said total bilirubin is the most important indicator.
When she said my MELD was virtually non existent I was paraphrasing. She said it was not even worth a serious discussion it was so low. That may have changed recently. I’ll be following up shortly.
My fatigue this week was out of the blue and scared me. Never had it this bad. Thankfully I feel much better today than earlier in the week.
Thanks again for all your candor and willingness to share your experiences with the rest of us. You’re an invaluable resource.
Be well and stay healthy,
Russ
Russ, fatigue and weight loss are symptoms of both psc and uc. While I had uc, I never had the undue fatigue as I had with psc.
With the fatigue, I learned to pace myself at work, both physically and mentally. Some weekend days turned into a three nap day. Runs turned into walks.
Jeff
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I too am sorry for your fatigue. Mayo Clinic will be recruiting for a clinical trial with vancomycin in another few weeks. Maybe you would want to consider that? Vancomycin has stopped progression in responsive patients.
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Thank you for your reply and suggestion. I am going to look into it.
Be well Cactus
Jeff, your insight is always appreciated. Thank you.
Stay well…