Hello,
Have one simple question about simptomes (puritus, fatigue ...)
You have simptoms all the time or they disappear ...
Good Morning!! I am only at stage one, ( I see my Dr next week) The fatigue is becoming more constant, the itching comes and goes. I have nausea from time to time. Abdominal discomfort starting to occur more and more. Hope everyone has a good day!!!
Hi Ed
I was very aenemic from bleeding in my oesophagus which added to the fatigue and gave me some lovely rides in ambulances. This is how I was finally diagnosed and I was already at the end stage. I managed the itching with a bath salts soak and a loofa scrup every night. It really helped.
I am post transplant now and putting my life back together. Still some fatigue but handling the new limitations.
Hi Ed,
I have fatigue most of the time and have just learned to plan activities so not to wear myself out more. I tend to be better mid-morning so I plan on the more tiresome activities during that time plus I do not over extend myself. You will need to learn to say "no". When you do have a good day, and they come once in a while, don't over do it but enjoy it! As far as pruritus, it comes and goes for me as well. I tend to itch more in my lower arms and lower legs especially ankles and feet. My doctor prescribed Atarax to help with the itching and I tried Benadryl prior with some relief. I find that the more water I drink throughout the day, the less that I itch at times. Night time is the worse though and I have difficulty falling asleep.
Barb
Interesting to hear about others' symptoms. Most recently I had been experiencing constant itching as my main symptom -- worse on my lower extremities, and worse in the evening/night. My Dr ran me through the gamut of different possible treatments for it, maybe 9 or 10 in all. Some were somewhat effective for a week or two, some not at all, some worsened my diarrhea. This last, Rifaximin, has reduced it to almost nothing.
With fatigue, I was experiencing really significant fatigue symptoms for a couple of years after my diagnosis in 2006. I went to a really good nutritionist and did an elimination diet. After three weeks of an extremely restricted diet, we introduced foods in a very regulated way -- this much yogurt, this many times a day, then wait these many days, etc. And all along I recorded what I ate, and my symptoms. I wasn't exclusively focused on fatigue, but actually mainly on diarrhea because that was the mot troubling. What we narrowed in on was a variation of the Specific Carbohydrate Diet, which often works well for people with Colitis. In my case there were some additional restrictions I needed to make too. And the point is, this has reduced my fatigue to the point that I could return to a much more normal life -- working part time, doing projects around the house. In addition, my nutritionist identified that I needed to be taking high high dose probiotics (900 billion live bacteria) daily and a significant amount of psyllium and chia seed for mucilaginous fiber. With that regimen, my colitis is as good as it has ever been, and the fatigue that I first experienced with the PSC is so much better.
I've had the Colitis for over 40 years, and like I said the PSC was only diagnosed 8 years ago, so I assumed that the fatigue was just the PSC getting worse. But what I've concluded is that when my liver was working better, I tolerated the Colitis better, but with both my liver and digestion not working so well, I was just run down. Adding the PSC (plus Auto-Immune Hepatitis) on top of Colitis meant it was that much more important to not be eating foods that inflamed my system -- foods that are my very very favorites! Noodles, potatoes, good bread, etc.
By the way, A couple of years ago my Dr suggested tracking fatigue and itching symptoms on a daily basis, and I keep a daily spreadsheet that records them on a scale from 1 to 10, plus notes like "started Zoloft today" (one of the many tries at reducing the itching), or "stopped cholestyramine today because of xyz". I chose to record the worst point in the day -- usually afternoon for fatigue, and nighttime for itching. Then when my Dr wanted to review what treatments had been most effective, we could just calculate an average for the time I was on one or another medicine.
Thanks for asking the question. Wishing you all the best day possible.
Hi Ed, I was diagnosed with PSC in 2010 after having my Gallbladder removed. I believe that I actually had the disease for many years prior to that diagnosis. Luckily for me it seems to be slow moving. I have occasional bouts of discomfort on the upper right side of my rib cage from time to time but other than that I usually feel pretty normal. My last flareup was over a year ago, that consisted of more severe pain and a fever that sent me to bed for a few days. Cipro for 5-8 days seems to put everything back in check for me. Good luck, hope this could be helpful, let me know how you're doing...DaveCJ
thnxs for reply
in my case simptoms came and go ... pain, itching, nausea, fatigue, etc... i have all this at the same time and all goes away ... I try to live a normal life but is hard from psihological impact on me. I always live wery active life, probably i didnt yet accept diagnose in my head.
Yes i we seen my doctor and run blood tests. They are all completly normal. They didnt do any clues. Just good liver compenzations.
Hi,
Now i dont have any simptoms they go away. For iching i realise after 3 months that is not from psc but litle twitching of muscles ... lack of potassium and magnesium ... Thanxs stephen i read your post of lacking vitamins and i start with vitamins and it works. And i have in my hand opinion of my second biopsy. Patologyst said that is not clear for what is going on. :)) He found iron and some inflammation all my small bile duct are ok for now.