Hi all,
I am a PSC patient with signs of UC. I have intense cramping almost to the point where I can’t move. Has anybody had this? I take 1500 mg of vanco a day.
Thank you
Hi Nick,
I have UC, and am wondering if you are taking or have recently stopped taking prednisone.
BB
Nick --
Another thought -- the first clue I had PSC was extreme roll-on-the-floor cramping, which was diagnosed as a gall bladder attack. When they took my gall bladder out, that was when they discovered the PSC. From that experience it seems possible you may have gall bladder issues. They're closely connected, as the extra-hepatic duct scarring gets very close to the GB. At least it is worth looking into.
Is the cramping in your stomach/abdomen area or are we talking legs, arms , hands, feet etc?
If the latter, increasing your protine intake to 60 g / day. It has helped my cramping big time! Protine powder is the best way to get this much protine as you would have to eat too much food to get that much.
I am seeing another doctor on Wednesday for this, but I will let her know about the Gull Bladder. Its mostly upper abdomen area, but it is so intense I cant walk. 2 trips to the ER in 2 weeks isnt fun. Usually wake up around 3-4am and fell like paralyzed. I will increase my protein intake. I use to take some Plant protein so I will start that again, I had a cat scan at the ER and all they could find was an increase in Stool build up, and a small amount of calcium buildup on my appendix.
Hello, NickBates22. My husband dealt with this cramping. My understanding was the cramps and muscle spasms are a result of a imbalance of salt and electrolytes due to the damaged liver. Try a pickle when you cramp. It usually worked for us. (After months of pain and money spent altering med strengths it was a simple pickle that did the trick. Can you image our irritation at that moment!) Good luck, Mate. Take care. God bless.
Lucky for you on the pickles. We tried that and it didn’t wrk. The protine is the answer for my partner… But he did not have cramping in the stomach, just the limbs, mainly feet and lower legs. Sounds like it could be something related to the digestive tract which is important to be in close contact with your GI or hepatologist about, for sure.
I have also had major cramping in my upper abdomen area off and on. I can remember laying on the floor not knowing what to do. I have come to figure out that is the first sign of a cholangitis attack which has almost always put me in the hospital. The last attack I had was this past July and it landed me in the hospital for over a week due to the infection. I have had at least 20 of these attacks over the last 15 years and it was just discovered that I have psc! My point is so little is known about psc that Dr's, especially in the er, just over look a lot of these signs and treat just the issue that is present and not the main problem.