Itching or neuropathy

[Charlie276]

I am currently waiting to see a rheumatologist for sjorgens symptoms, dry eyes, mouth etc however I have been itching like crazy, when I googled those symptoms together pbc came up. I wanted to ask what the itching for pbc felt like, my itching is a combo of pin prick type itches like being bitten or wearing wool and also cobweb or hair type feeling. I keep trying to pick hairs of myself when none are there. Also would describe bug crawling feeling. The itching/sensations are body wide, not all at once but in several places at once and the itch can move around. It is pretty much constant from the time I wake up to when I go to bed and sometimes during the night it can wake me.

I will bring this up with my rheumy but wanted to know whether it sounds like a pbc itch and whether I should push the issue. I do know my routine liver test from gp where within normal ranges.

[butterflyEi]

My itch came from deep within, I would dig my fingers hard into the depths. I have also experienced the cobweb feeling. More usually the itch is said to be more active at night but I experienced (and sometimes still do) more in the afternoon and night. Your description follows the pattern for PBC though, I would suggest but I am no doctor.

Cholestyramine is the first line itch treatment. It is a gloopy powder that is best mixed with something like kefir or mashed into a banana the Patient Information Leaflet (PIL) used to say mix with water but that makes the mixture almost undrinkable.

Itch can be associated though with other diseases so you would probably need a wider blood test and hopefully the rheumatologist can help you with that. I hope your wait to see the specialist is not long.

[Charlie276 in reply to butterflyEi]

Thanks so much for the reply, I’ve not taken any pilocarpine today to test if it is that causing it but it’s still there. I was hopeful this morning as it wasn’t as bad but it’s got worse throughout the day. To be honest I’m less bothered when I am sleeping at night, although I do think it maybe worse of an evening but whether that’s just the time I’m sitting around and am more aware who knows! it’s has woken me a few times but not all the time. A few more weeks wait to see the rheumy, I know it’s not long but it’s the last few weeks of the wait that seem the longest!

Thanks so much for the advice, should they find anything pbc related the tip on how to take the medicine is great.

I do have to say though that my umbrella autoimmune test was negative, I think it’s called the ena or esr screen was came back not indicated, I believe the AMA test probably sits under this umbrella along with the other autoimmune specific markers. I could be totally wrong there but I think that’s how it works. Also my albumin, ALP and Bilirubin all came back in normal range so not sure how I am ever going to get figured out for whatever is going on.

[genj65 in reply to butterflyEi]

Hello I've had the PBC itching since 2017. Unfortunately nothing has stopped it so I itch everyday rub aveno itch lotion to calm it and take two cups of children's liquid benadryl to sleep it off at night😒 I tried every medication, Plasmheris, and 45 sessions of UV light therapy nothing helped so now I'm seeing Dr at University of Michigan and they recommend I have liver transplant. I would be on donors list but not as a rush candidate bc although this itching is horrible the patients who need liver to live come first and I totally understand that. I hope you find something that works for you.LIVE. LOVE. LAUGH

[Charlie276 in reply to genj65]

Oh no that sounds awful, I’m so sorry nothing has worked for you. I hope you get your transplant soon. I know there is a priority list but quality of life is important too.

[LindaButler191155 in reply to genj65]

The PBC Foundation are hosting a special questions and answer session on the itch on Monday 27th September at 2pm with Dr Vinod Hegade, you can access the session via Facebook . Please send in any questions you might have with regards to the itch to [e-mail] in advance. The session will be on our Facebook and our YouTube channel to view for those of you who are unable to attend the 2pm session. Any queries please call the office on 0131 556 6811.

[genj65 in reply to LindaButler191155]

Hello Linda is there a link or invite for this just wondering how would I tune in? Thanks so much!

[Dexiedog]

HiI have Sjögren’s syndrome and pbc and I also have that itch… nothing relieves it I’ve tried several things… I would push for tests for possible pbc diagnosis!!

Hope this helps

[Charlie276 in reply to Dexiedog]

Sorry to hear that, did you have positive blood markers for the Sjorgens? If not how do they determine pbc related symptoms from sjorgens? I don’t have any blood markers for anything it would seem. Have you had a lip biopsy? I’m booked in for one when I see the rheumy but I’ve read horror stories so am not sure whether to bother as treatment essentially would be the same. Can you take hydroxychloriquine if you have pbc?

[Dexiedog in reply to Charlie276]

Yes I had the lip biopsy and positive bloods, the lip biopsy wasn’t to bad.. I got diagnosed with pbc and sjogrens a few months apart with bloods and scans… I take hydroxychloroquine for the sjogrens but am a non responder to ursodeoxycholic and allergic to bezafibrate so I’m currently waiting for my consultant to give me different meds for pbc.. hope this helps

[Esnofla]

Does sound like PBC itch but follow up with doctor. I always felt like I had tingling electric bugs all over my back. Once I went on Urso, and my numbers normalized, it calmed down.

[Charlie276 in reply to Esnofla]

Yes exactly that, like tiny bugs crawling or being tickled with one hair and then it might change to pin prick or bite sensations from the soles of my feet to the top of my head. It happens in my eyes or inside throat also though I don’t think it’s related to the dryness. It’s the same pin prick feeling but inside. I do have a Gp telephone appointment next week specifically for the itch but they are as useless as a chocolate teapot so I might just wait to mention pbc to the rheumy who will hopefully be very aware of it anyway.

[gillrich]

Sounds like pbc to me Google pbc foundation and or emailing Pbcfoundation.org.uk

[Charlie276 in reply to gillrich]

Thank you, I did speak to a man there and I have to say he was very helpful, got me to join so I could access all the information which I have read and kindly sent me a welcome pack. The website is brilliant and has a plethora of info and help but it doesn’t describe the itch which I guess is personal for everyone so I thought I would ask what people’s experiences were as my itch is a combo of tickles and pricks. When I’ve had hives before for instance the itch is more of an normal itch and burning skin.

[gillrich in reply to Charlie276]

Yes everyone's itch is different but similar as is everyone's pbc symptoms!!!