My 'Thursday Thoughts' was a conversation (hopefully) about itching.
If anyone experiences this with their PBC, I know it would be helpful to others to read what has (or hasn't) helped. Some things do make it worse.
For me, chlorine from pools, sweat, and prolonged time in direct sunlight sure made it much worse. Any kind of perfumed shower gels or soaps were awful for me. I ONLY used Dove Unscented or Baby liquid soap.
Any tips from anyone?
Please don't be afraid to post. What you say may be just what someone else needs to hear today.
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DonnaBoll
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Well here I am with cirrhosis and I actually don’t itch. I have had episodes though in the past. It was about the time I had menopause and at night my butt cheeks would itch. I took ibuprofen for it and that did help. I should add that I had no idea it was a liver issue. I wasn’t diagnosed until about 12 years later. Also, once I got past menopause it stopped.
I’m okay with the cirrhosis I guess. I have to be! There’s no other choice. I think I must have an early stage of it. The ultrasound always says cirrhosis and the biopsy came back f3 . That was in 2017. I do get tired sometimes but not so tired I can’t do what I really want to. So, I guess it just hasn’t affected me too badly in a negative way. For sure I was freaked out at first and to be honest , I do have days where I get tired and I think “this is it, I’m dying “ but I did start making frequent visits to the gym and out for walks and it seems to make me feel better.
I love your whole attitude about this. How we think can make all the difference I have no doubt. We do all have 'those' days, don't we? And then we have the next day to hopefully to make it better for ourselves. Good for you for going to the gym and walking. This makes such a difference physically as well as mentally. I'm hoping your inspiration will rub off on me.
Mine flares up now and again and can be hell when it does I get bumps all over skin and even on scalp, I was prescribed sertraline and seems to be keeping it under control which is weird but consultant said to try as questran wasn't working anymore. I find 100% cotton clothes and bedding also helps too. Hope this helps someone.
I had those bumps on my legs. They were so miserable and itchy for me! That is the second time just this morning I've read that Sertraline has helped someone with the itching. What we wear does matter. Linen and anything like nylon is a no! Thanks for the suggestions.
Thankfully, although having PBC for 18 years now, I have never suffered from the ‘itch’. I stopped eating meat in 1998 and developed PBC in 2006 but no itching ever. It seems to me that the bile is produced in excess to digest meat and any ‘extra’ is then circulated in the blood causing the itching. Without meat to digest less bile is needed and the itching does not occur. Maybe change of diet might help? X
I have been a vegetarian since I was 6 years old and sadly I itch. Before I was diagnosed my hands, forearms and feet drove me crazy especially at night. Urso improved it for me so I’m not so bad now.
I'm so glad that the Urso has helped. I seem to be reading this more and more lately. I can remember all too well nights of sitting on the side of the bed crying for the itching on my arms and legs to stop. Lots of 'trial and error' in trying different creams and aides for most of us.
Thanks for sharing what has helped for you. Dietary changes have made a difference for so many with regards to the itching and overall well being - feel they have less inflammation in their bodies as a result of not eating meat. PBC, after all, is an inflammatory disease of the Bile ducts. It makes sense.
My hands itch so I take cold compress from the freezer wrap in a tea towel and put my hands on it. It seems to take the itch away and then I can sleep.
Thanks for the suggestion! I know some people actually wear cotton gloves at night to help cut down on the itching while they sleep. I've have a smaller 'cold' wrap that I've used on my knee. I put it in the freezer and then it slips into a cloth pouch of sorts. Really does help and stays cold for quite awhile. It has Velcro to keep it in place.
Itch led to my diagnosis. I thought I would go mad. Legs, arms, torso. Scratching never helped but I couldn't help it. Looked like I had been through a bear attack. Only thing that helped was cholysterimen (sic) powder which my doctor prescribed. Urso helped once I was on it. I do best when I drink enough water and eat right. When I veer off into unhealthy habits at all, the itch returns sporadically. Doxepin was prescribed to take at night when the itch is worst and it helps with sleep. Like others here, I only use Dove for Sensitive Skin in shower, scent free laundry soap etc. But biggest thing seems to be my diet and getting enough water. Things that should be easy but aren't always
Thanks for sharing what has helped out with the itching. It sure seems that healthy eating has so many benefits. Who would have ever thought that before our diagnosis it would someday be helpful for our itching?! My itching was worst on my legs.... reddened bumps and scratching until I was bleeding seemed to last forever. You are so right about what's the best for us isn't always the easiest for us to stick to. You would think if it was good for us, then we would just do it. Not so much! Thanks again.
I was first tested for elevated liver enzymes in 1993 and given a PBC diagnosis in 2014. During those 30 years, I've had almost no symptoms but testing has shown there is definitely liver disease. The one symptom I had was itching a few years ago when I was put on Ocaliva. When the itching was unbearable, I stopped using it; however, some itching continued. I decided to check with an allergist in the event that the itching was the result of an allergy. As it turned out, my Vitamin D levels were very low. The allergist prescribed a large initial dose of D with continuing smaller doses. That solved the problem. This might have been a fluke but it may be worth checking.
Thank you for sharing such an interesting turn of events for you. You are so right about always checking out other causes for some 'new' events with your PBC. Ocaliva, unfortunately, has caused worse itching for many taking it. Whether it was a fluke or not, so glad the itching was caused - and helped - by Vitamin supplements. I agree that every one should have their vitamin levels checked.
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Fatigue 
No diagnosis as yet 😔
Fatty liver diet
Does anyone suffer from STEATORRHEA?
+AMA, No liver function, no symptoms
