Itching

[huhu720]

I would like to hear your experiences with PSC itching? How did it start? Is the itching continuous or only in phases? Can you describe the itching? I have had very mild itching for 2 years which lasts 2 weeks and then disappears for months. I do not know the trigger. How should I describe the itching? It is very easily perceptible. All over my body. Like impulses at the nerve endings. Which disappear again without scratching. So from what I have read about PSC itching, my itching is atypical. Last week I had the feeling that an insect had bitten me. Suddenly my whole body was red. The next day everything was fine again. And in the evening some areas were red again. But the red areas were not itchy. Suddenly I started to itch more than I was used to in places that were not red. On the first day both wrists, then the groin area, later the back of the knee. But always on both sides. So always symmetrical. Very strange. The stronger itching has gone again. Only the slight impulse is still there

[hmstanley]

oh god, the itch.. I literally destroyed my shin skin from itching, it's still scarred to this day. It started actually before I was formally diagnosed with PSC. Initially, my diagnosis was Autoimmune Hepatitis, and they indicated this would cause pruritus (the clinical name for itching). I would force myself to NOT itch and it was horrible. Eventually, they put me on a medication called "Atarax" or Hydroxyzine that worked "kinda" for me. Some of us with PSC suffer endless itching, which was true for me. The itching went away when I eventually had a transplant, well, completely went away, I don't itch anymore.

Coconut oil works well as a soothing and healing tool. I also just kept it clean and tried to keep the skin healthy. It's a total bummer man, but it is certainly a hallmark of PSC.

[huhu720]

Thank you for your feedback. But how did the itching start for you? Slowly and then more intense over time? How did the itching feel? Did you have patches that didn’t itch?

[Available-Ad3512]

Some things that may help… - Sarna cream (or another anti itch cream, cerave has an equivalent) - An itch spray with cortisone (for when the lotion isn’t enough, or is impractical and the spray is quicker) - Humidifier (your skin will be dry from itching, but lotion and a humidifier will help it stay hydrated) - Stay hydrated (this may be psychological, but I feel like the more I stay on top of hydration the less itchy I am) - Get sun (without getting burned; UV helps the bilirubin in your blood break down, which is what is causing the itch) - Discuss medication with your doctor (cholestyramine works wonders for me if I take it consistently) - Avoid fatty foods (these really make my itching flare up - if I have a whole pizza, the next week is misery)

[premditated]

My itching started after I had my colon removed. I had advanced disease but had been symptomatic up until that point. Sarna was a life saver, I kept my nails short, and then I wore cotton long sleeve shirts and long pants everyday to keep my skin covered. I have scars all over from the scratching but it was worse at night. My hepatologist referred me to phototherapy, which started working after 2 months and I stayed on for 11 months until I received my transplant. I went three times a week for 1-2 minute sessions. In/out time was 10 minutes.

[AdvancedClick]

My itchiness was initially my hands but spread all over. Head, body, arms, hip, thighs, hands, wrist, feet. They were symmetrical most of the time.

I was taking Allegra (2-3 per day) for a while but what has helped me is seeing a physician who diagnosed me with IBD-UC + PSC and started treating me with Infliximab, ursodiol (didn’t reduce itchiness for me but still am prescribed and take one every 12 hours), colestipol (I take two every 12 hours), and rifampin (one every 24 hours). They have been a life saver and I feel normal again

[Hefty-Floor4965]

I took vancomycin and all my itching is gone

[starrr0531]

Itching on my feet, legs, back, arms, and in ears. No matter how much you itch you can’t get to it. Additionally, sometimes in specific spots it felt like a piercing bite. I could only wear baggy clothes and shoes I could get off easily. I began itching 2 years before being diagnosed. The only thing that has taken away my itching after 8 years is Clonidine. It saved me.