Itchy little bumps on skin

[Wocket]

Does anyone get itchy little bumps on your skin with PBC? I have odd clusters of these little bumps that can be a little itchy and don’t know if it’s just something to ignore or if it’s a unrelated thing I have.

[butterflyEi]

I get little bumps on the skin usually around shoulders neck and sometimes my arms. I worry at them until they break, which perhaps I should not, after a while they disappear but if you have a bad case it may be worth asking your doctor.

[Wocket in reply to butterflyEi]

Hi ButterflyEi thanks for your reply. There isn’t many of them so I think I will ignore them.

[LorraineLouise]

I get little bump that itch like crazy. They are by my right knee. I’ve been to see two different dermatologists. Neither seemed to know what they are. They tried different medications but again nothing worked. Seems to flare up and then subside a little. They never go away however.

[Wocket in reply to LorraineLouise]

That sounds the same as me but mine are on my wrist and where my bra band is. Never mind I’ll just put up with it. If you ever find an answer let me know.

[LorraineLouise in reply to Wocket]

I think it’s related to the PBC. Started shortly after I was diagnosed. There are so many things that go along with this disease. The dermatologists never even heard of PBC. I’m soooo tired of having to explain what PBC is to Medically trained people. Last time I went for labs the technician asked me when I had stopped drinking.

Some times I don’t even feel like explaining this disease. It’s exhausting. Be well.

[Wocket in reply to LorraineLouise]

Thanks LorraineLouise you be well to.

[sleepytink]

yes I get these horrendous little blister like bumps mostly on my fingers and hands , I try not to scratch but it seems impossible they heal quickly after they have blistered up though!

[Wocket in reply to sleepytink]

Glad it’s not just me. I have a habit of putting everything down to PBC.

[vicary]

Hi Wocket, I was diagnosed with PBC 9 yrs ago, 2 yrs ago i started to itch which steadly got worse! Unlike you I didnt start with the itchy bumps, my lumps came as the itching progressed , most of my body ended up with blister like lumps that then turned into hard scaby lumps , they just got worse because my itching got worse , the worst ones where on my scalp , my skin was like leather , wearing clothes was a nightmare ,mybody was on fire all the time esp my feet and hands which in tutn made the it itching unbearable, if i was lucky i slept 2 hrs a night , sleep deprived and in so much pain i became depressed , i had no quality of life what so ever, it was torture I didnt want to die but i wanted to go to sleep and never wake up , i cried constantly . It is called piritius extreme itching caused by the bile going into the bloodstream and crystalising due to it no longer being drained away ! It is an effect of PBC not everyone gets it and i pray with all my heart its not the start of it for you , there is medication that can help but it didnt work for me ! I now have a nasel biliary drain in situ that drains the bile off which is amazing and i no longer itch but its a short term fix , they have put me on the transplant list now as that is now the only answer my bile ducts are knackered and i know i could never go back to the pirituis , i know it sounds extreme but i dont think I'd get through it again in fact i know i couldnt it was hell on earth . So please if yr feet and palms start to burn and itch ( biggest sign of pirituis ) you get all the help you can , you push and push make them take it seriously , I suffered longer than i shoul have, they even tried plasma exchange for 3 months and it didn't work just more pain with all the needles and my veins collapsing, i am now under St James at leeds and have a team of liver co-ordinates , dieticians and psychiatrists looking after me , who are always at the end of the phone and see every month they are truly amazing and I know they are the ones to thank for me being here today . I wish you well and like i say prey that it isnt pirituis and just a skin condition that will pass , but dont hesitate to message me if you have doubts or questions , i will help in any way i can. Take care X

[Wocket in reply to vicary]

I am so sorry you have had such an awful time and I can understand a little how you feel. I have itching in my hands and feet which my gp thought was scabies but when I was given Urso my itching improved. I still have some itching but the little bums are new. I really hope you get your transplant soon.

[vicary]

I was put on Erso when i was 1st diagnosed its mainly to slow down the progression of PBC , and it did for a few yrs , my itching started whilst on Urso then the lumps followed ! so they upped my dosage but unfortunately for me made it worse and then i became none responsive to urso for my PBC and anything else they gave me ! I have calcium, vit D , iron and folic acid deficiency , boarder line thyroid , muscle wastage , Sjogrens syndrome which causes thrush in my mouth and conjunctive hiatus, acid reflux and Osteoarthritis and i dont absorb fat so lose weight all the time hence the dietician these are all side effects of PBC . Not many GPs are clued up on PBC hence yrs thinking it was scabies , i am lucky my GPS have took it upon themselves to get clued up so they can understand and help me as much as possible and my consultants and GPS keep eachother informed . Long may Urso continue to work for you it does for many people ! I wish you all the best and that yr itching never elevates .

[Wocket in reply to vicary]

Thank you and I’m sorry that Urso didn’t work for you. I think I am one of the lucky ones.