Been itching a lot this week but getting little lumps like bite marks is this normal ? Haven't itched since been diagnosed with PBC , before I knew they was anything wrong with me I was itching in my groin area for about 3 months when I went to bed but didn't know why , can't remember any lumps and then it' stopped . Been taking urso since I was diagnosed 6 month ago but the itching as just started this week on the back of my head and my inner thigh but it's leaving these marks what look like bite marks ?

14 Replies

  • Hi Steelie

    I went through a phase of the itch with little bumps and still occasionally notice little lumps which will bleed when I have scratched at them.

    I posted roughly 7 months ago about the itch thinking that I had got on top of it but of course in the end the itch continued. I also occasionally get a groin itch but basically I get the itch in different places at different times, sometimes it is more difficult to ignore than at other times. I get a funny sensation around my feet and lower ankle and also a feeling in my face as if there is a spiders web across the lower half. very odd!

    As of one month ago (on the advice of the surgery) I now take Cetirizine X 2 in the morning then just before dinner I take the Cetirizine again. With the morning and evening Cetirizine I take Ranatidine. Then at night I take my full dose of Ursofalk with a Simvastatin tablet. I also take one oil of evening primrose each day but I don't think it makes any difference to me as I forgot to take it when I went on holiday and during that period there was not differences to be noted. I also drink a couple of cups of coffee in the morning and one in the evening. I regularly ex foliate in the shower and then use double base cream after. Most everything I try will be because of something I have read on the internet although the Cetirizine was prescribed by a GP at the surgery just because I was desperate with the itch.

    At the moment my itch sensation is calm, in this month I have still been aware of the itch but only in the background. I am subject to being rather over sensitive and find that when I allow myself to become upset over outstanding family matters the itch will still find a way to break through the medication.

    Will you go to your doctor or are you under the care of a hospital specialist?

    best wishes

  • I'm under a hospital specialist but my next visit is in 6 month but I can contact him at any time . Thank you for your reply it has helped me X

  • Hi Steelie, have you tried coming off Gluten? I had a terrible groin itch, and between my breasts - it went completely after one week. I have PBC and Sjogrens but any itching I have now is minimal - I think its because I dont have gluten - if I get lax about it then the itching comes back. Maybe this will help.

  • Will give that a go thank you

  • I too have PBC and Sjogrens, I must try coming off Gluten, and I itch as well. Do you take anything for Sjogrens? Thanks..

  • Hi Norma, I try to stay away from medication - I just take Urso for PBC. I read a book by a doctor on the immune system. She said that most people with autoimmune diseases are gluten sensitive and it doesnt show up in the regular gluten test. I found that to be so in my case. I think I have had Sjogrens for about 20 years, i managed my symptoms because I didnt know I had anything ie dry eyes and dry mouth - now I have toes that feel dead when Im the slightest bit cold, and I am losing my taste. I try and stay healthy, with supplements. I am tired most of the time though, but that could be old age and PBC - I just dont know!

    Venus Williams manages to play tennis and win, she has Sjogrens - I think she went vegan so there is proof that diet works. Google anti inflammatory diet and just try it and see. My itching is confined to my head,face and neck but its only slight, as someone said, like a cobweb or a hair passing over. Hope this gives you some options, I'm a firm believer in 'you are what you eat' and if you try and you feel better, well thats a plus.

  • Thank you for your reply. It is interesting to know someone with the same diagnoses. I share the same belief in eating well and exercising which I've done my whole life. I think you are on to something with the gluten sensitivity, I wonder what test other than the regular one for gluten is used. I go to my family dr. next week, it's been 1 and 1/2 year since my diagnosis with pbc and Sjogrens the year before . Do you mind if I as your age.. I am 57 and taken care of myself all my life, so this was a bit of a shock when I first heard about pbc. I would like to start a gluten free diet and not sure where to start. Did you have a naturepath or dietitian help or you just do it on your own. Do you know which type of sjogrens you have? Thanks again for your reply.

  • Hi Norma, a meeting of minds! Im 72 and was diagnosed in January with PBC and Sjogrens in March. No, I google everything and I know more about my condition than my doctor! Im her only pbc patient. I live in Ireland and its hard to get to see a consultant, its once a year I believe. But Im OK at the moment. I read about being gluten sensitive myself, came off it and it worked. Perhaps it doesnt for everyone but we are all different. Stress is a big factor in autoimmune diseases and you must address your stress. hope this helps. Pat

  • Hi am newly diagnosed I get the itching and mine looks like heat rash all red and I could scratch myself to pieces. I take one Antihistamine a day I don't know if it's ok for me to do this but it does help me.

  • My doctor suggested an antihistamine and I take one a day. I am also newly diagnosed.

  • Ive been there myself, nothing works.... except, in my case cutting out gluten - you will know in two weeks if the itching subsides. Try it and see.

  • Kandiepat. Hi,I agree with you. Cutting out gluten is better than any anti histamine you can think of,but it is very difficult to find 100% gluten free food.: Salt, pepper, spices and I can go on and on, they all contain gluten, even some ice creams . You get the Gluten free stores, but I find they do not keep everything you may need. So at the moment I try and eat lots of vegetables,fruits, all raw, salads, no salad dressing, no cakes (very boring diet) but it is rewarding. I also think each one of us reacts different to foods

  • I have similar symptoms which I have attributed to Undifferentiated Connective Tissue Disease (UCTD) and not to PBC. UCTD is another autoimmune disorder. Like many of us, I have several autoimmune disorders, I am also prone to mouth ulcers. The itching and other skin issues have been kept somewhat under control with prescription cortisone cream and medications used to treat a variety of autoimmune diseases. Those medications are plaquenil and colchrys. Hope those spellings are correct. My suggestion for you is to see a Rheumatologist first and then a dermatologist. I hope that helps. Meanwhile, I sure hope you feel better! That itching is crazy making! Finally, the less stress the better. Stress always makes it worse.

  • I itch sometimes so bad that I look as if I have chicken pocks, i.e my tummy and back, legs also itchy, but luckily no marks yet. I scratch until the marks start bleeding. It feels like something crawling under your skin, but I suppose there are people with much worse diseases

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