I am experiencing my first bout of pruritis, and I have seen some posts where people have noted having bouts of 4 months or longer.
I know that the idiopathic nature of PSC would have it that everyone is different but I was wondering what your experiences have been?
How long have you had bouts of pruritis and were they associated only with elevated Bilirubin (back up causing the itch) and what were your levels? Did you have specific other LFTs that were higher than normal and at what level?
I had two bouts back in 2017 but they pretty much lasted a day or so, likely because I got corticosteroid relief in the hospital. My Bili was 23 and 30 both times, and it was my AST that was elevated to around 600+. The itching was due to idiopathic urticaria with clear signs of pustules under the skin (it was hideous and I thought I would be permanently deformed).
This time, my Bili was raised to 28 (on Friday night) and I got retested today and I am back in the normal range, but am still suffering the itch pretty badly. While my AST and ALT were not far from my baseline (still elevated), my ALP was at 476 on Friday and was up to 585 today. Interestingly, my Eosinophil levels were up on Friday but more today as well (1.7).
I know my condition is not as dire as many of you, and I consider myself rather fortunate but I am really curious about the relationship with the numbers and the itch. I would have thought once the bili was down, so would be the itch and my ALP and other numbers would have reduced as well.
I hate the itch, but am fascinated with the science and just wondering if others’ experiences might shed some light on my urticaria vs. AST and bili and straight pruritis vs ALP and bili and eos.
I’m feeling you with the itching, I have had a few times since 2010 when I was diagnosed. There were times the only cure was to sit out side on a cool night after a Luke warm salts bath with a package of oatmeal bath powder.
After multiple visits to my doctor, I was given a short one week regiment of prednisone, which is usually not recommended, but he had me take it anyway. I found relief in 3 days and I had just started drinking coffee some weeks before.
My specialist was astounded at the drop of all my ALP AST Bilirubin to near normal levels! He noted PSC doesn’t typically react to Prednisone that way, and he was eager to hear exactly what I was doing.
I had stopped virtually any kind of fatty food, no oils or even olive oil. He was curious as to what made me want to drink coffee? It was a nurse at the hospital that mentioned it. As well I started a Plant based Whole Foods diet, got away from meats and dairy.
For me, it made doctors wonder if I had PSC at all! Another 6 months of many tests, since then, 2 years now, I have had zero itchy spells!
I have how ever had 2 heart stents put in, on blood thinners, 2 kinds of cholesterol meds, one being Cholestramine .
I just had my full range of liver tests, found that my liver stiffness test improved by 20%, my fatty liver by 15%.
We are all scratching our collective heads!
I’m on some baby doses of heart meds and a nitro pill isosorbide, and for some reason my condition has improved.
I see the great liver doctors at Toronto General Hospital.
I continue with my 3 month test cycle, and I hope the future is bright.
I’m hoping your itching improves as I know how crazy it can make you feel. The Cholestramine powder regiment works well at getting the bile acids out of your gut and reduce the itch.
Charles
I am so happy to read your response as I was going to (and still might) start a different post regarding nutrition and PSC.
I went vegan around the time of diagnosis and have been focused more on whole plant based foods (i.e. avoiding or limiting processed foods).
There is plenty of research on the overall benefits to health for everyone with this diet, as long as certain supplementation is heeded (i.e. B12 and D). I do realize that it may not be as easy with those with concomitant Crohns or Colitis.
I limit fats but we need some (avocado, nuts…) but not to overdo it.
It is funny what you say about coffee because research and a advice notes black coffee…one to two cups a day definitely helps the condition.
There is a nasty correlation to a higher level of bilirubin and itching. When my itching got really bad, my dermatologist prescribed mometosome, a steroid-based cream that is somewhat awkward to use. But it really helped within a day or two.
My itching goes through peaks and valleys. It has been particularly noticeable the last three weeks, but my blood work last week showed my bili at .7. I figured with the itching that it would be higher. Luckily, it was not.
Thanks Jeff. Hope it goes away soon. My bilirubin and ALP went down only to.rise again on Thursday. No sleep and and bad markings from the scratching. Was prescribed Atarax but it did absolutely nothing.
With 4 weeks of feeling bad and two with elevated levels, I am reluctantly on cipro and metronidazole. Trying to keep pro and pre biotics up and then will repopulate my gut.
Two days in and the itching is better but still strong. Much rather have abdominal discomfort than the itch though.
Bili rose back up to 1.64 (here we use the different scale…28).
So…itchiness without elevated bilirubin? I guess I have had some but it was relatively minor then.
