For those of you that regularly exercise, have you ever noticed increased right upper qudrant pain with the exercise?
Sometimes I get significant discomfort brought on by exercise, both cardio and weights. This past week it has been significantly pronounced, and hasn’t gone away, even with taking a break from exercise.
I guess I am just trying to determine if anyone else experiences this so I can determine if its the exercise possibly causing this, or whether I am just having a PSC flair up, and the exercise is coincidence.
Fyi, I have been working out for the past 3 months, give or take, and while there has always been a little discomfort at times, the intensity over the past week has sharply increased.
My liver enzymes have spiked as well during this time. Interestingly, I just was just reading about potential reactions to anethesia, and I just had a colonoscopy approx. 30 days ago.
Just trying to make sense out of all of this. I would really appreciate any comments or experiences you can share.
Steve,
Thanks for your post. I’m very glad to hear that you are maintaining a good exercise regimen. That is so very important with PSC and especially as things advance you need to keep your core strength in good shape to be able to endure a possible transplant one day. Keep up the good work.
I think your right upper quadrant pain would more likely be a PSC issue. What was your last bilirubin level? When was the last time you had an ERCP procedure? Are you also experiencing significant discomfort in the lower right back area as well? Have you run your MELD score lately? Use this link and that will give us an idea of how things are going along for you. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
I definitely believe the RUQ pain is PSC related as well.
I was only recently officially diagnosed with PSC, and its thought to be in
the early stages. I have not had an ERCP yet, but I have had two MRCPs, and
have another one scheduled for this Monday. First MRCP came back clean. A
year later, the picked up what appeared to be narrowing of the bile ducts.
My recent blood work last week (was experiencing symptoms at that time)
showed the following:
Alk Phos 256
ALT 116
AST 70
Bilirubin Direct 0.1
Bilirubin total 0.5
Prothrombin Time 13.5 sec
INR 1.00
PTT 26 sec
With the exception of the first 3, everything else is in normal range,
including bilirubin. Up to this point, my bilirubin hasn’t jumped out of
its normal range, although surprisingly, I have still had bouts of itching
from time to time.
Sorry to hear you’ve been dealing with some RUQ pain. It’s no fun. I have experienced quite a bit of RUQ pain myself, although it seems my disease is much further along than yours.
I have had bouts of RUQ pain that have been so severe that I was unable to do anything other than sit on the couch; trying to lie in bed was unbearable due to the increased pressure on my abdomen in that position. I have also had the same radiation in the back, right behind my gallbladder, that you have mentioned. It also radiated up into my neck.
What has helped me tremendously is Ursodiol–300mg three times per day. It thins the bile, and my assumption is that it has allowed more bile to pass through my narrowed ducts–enough to stop the pain that I believe was due to bile backed up in my gallbladder.
My doctors are all skeptical of the efficacy of Ursodiol in PSC–and no doubt it will not stop the progression of the disease–but it has allowed me to live a more normal, comfortable life until transplant.
Steve, had some abdominal pain several years ago, but when it started radiating pain to my back, that scared me and put me in the ER several years ago. Hit with the diagnosis of psc.
I think that when the pain radiates to the back, something else is happening more serious than just ruq pain.
I have an MRCP scheduled for Monday, and a visit with the hepatologist shortly after, so hopefully we can figure out what is causing the increased discomfort.
In the past, it has always stayed for a couple of weeks, then went away, so my fingers are crossed.
Right now, other than the RUQ pain, I don’t appear to be having any symptoms of a cholangitis attack: no fever, chills, jaundice, dark urine, light stools, etc., plus bilirubin is at normal levels. If it gets worse before Monday, I will consider going to the ER.
Steve,
I shouldn’t have said lower back, you are right behind where the ruq pain is located. Your liver actually wraps around your right side to your back so it’s most surely related to the ruq pain.
Good to know about the Urso. My doctor originally had me on it, but once we confirmed the PSC diagnosis, I kind of got scared after reading the study regarding high dose Urso. Since a very low dose was normalizing my liver enzymes, I may consider getting back on it, if nothing other than for quality of life as you guys have discussed.
It’s really great to have this forum to learn about the disease and listen to others’ experiences with the disease. I will be sure to share with others as I (unfortunately) get more experience with the disease.
Steve,
I do really encourage you to pursue taking URSO. Opinions vary among hepatologists, but for most of us on this forum, it greatly improved quality of life. I was on 1200 MG a day for 4 years and it did make a difference. The very best to you and please let us know how your MRCP turns out.
My advice is certainly no replacement for the guidance of your hepatologist, but my hepatologists (one in Seattle and one in Cleveland) have both reassured me that my high dose Urso regimen will not do me any harm. They say that if it seems to help me (which it certainly does), then I should continue taking it.
It has almost completely eliminated my RUQ pain, has helped my appetite tremendously, has lowered my enzyme levels and MELD score, and people keep commenting on how much healthier I look compared to my pre-Urso days. My complexion is improved, my BMI is trending up (a good thing for me), etc.
My hepatologist originally had me on a low dose of Urso at 600mg daily, which was enough to normalize my blood work. When I read about the high dose Urso research, I became concerned and discussed with him. He took me off, but more due to my concerns than his.
Looks like I am going to have to reconsider this. I have always enjoyed working out, and staying active, but this RUQ discomfort is making it difficult sometimes.