Question

[1155Cat]

I keep hearing people say things about the itching ... how do I know if an itch is related to PBC ??? And how far into the PBC does the itching start ???

[vicary]

Hi , believe me you will know if its related to PBC or not , its like an itch you've never experienced before and is at its worst at night , mine feels like spiders under my skin and is very intense , it can also feel likeim being stabbed constantly with a sharp needle and be very painful and has reduced me to tears many times ! There is no saying when you get the itch or if you will , some people never get it , it is caused by the bile build up in the blood stream due to it not being taken away , it then crystallizes under the skin and causes the itch - toxins in the blood stream ! This doesnt happen to everyone , for the 1st 5 yrs of PBC i only had to deal with the extreme tiredness , my itching began gradually over the next couple of yrs , but the last 2 yrs have been horrendous the itch is unbareable and it burns along with every other symptom you can get with PBC , I have deteriated so much im now on the transplant list , at present i have a nasalbillary drain in attached to my bile duct coming up through my nose down a long tube into a drainage bag to drain off some bile , doesnt always work brilliantly but when it does the reluef is amazing and i couldnt be without it now , the worse parts to be affected are the hands and feet although you do itch everywhere and i mean everywhere they are the worst because they burn like crazy , yr skin becomes like leather and covered in lumps , scabs and lesions, so i pray with all my heart yrs is just a normal itch caused by the time of yr and you never develope the itch ever !!! Take Care x

[1155Cat in reply to vicary]

Thank you for your response ... I am so sorry you are going thru this ... I will definitely keep you on my prayer list for a cure ... better yet a new liver. I have had 2 bouts with itching ... I had 2 very tiny spots on my shoulder, I told my dermatologist (this was about 4 hears ago before I knew anything about PBC) it felt like little stabbing pains ... they cut one of the spots and sent it for biopsy and it came back as nothing ... the spot he did not cut still every so often feels like a tiny stabbing pain. From your explanation.. maybe it is just the time of the year or dry skin that has caused these couple of bouts of itching. Again, I Pray for a cure for you !!

[butterflyEi]

Diagnosed 2006 itch started in 2014 and is still with me although I am medicated for it. The itch bears no relation to the advancement of the disease. My blood results are near normal but the itch is ballistic. vicary explains it well, mine is mostly in my arms but also on the lower half of my face. Before the medication and especially in my left arm it was as if there was a sword fight going on deep within me.

[cazer]

You will know... Its like midgy bites without the red mark.. Really difficult to tolerate...

As the other person says... Pretty awful x