The itch

[FarahS]

Hi there,

Hope everyone is doing well? I have a general question about the dreaded itch and just keen to understand different PBC patients experiences. Mine comes up like hives or welts. Raised skin that’s red and itchy and if I scratch it gets bigger and pops up in other places and so I put something cool to alleviate the symptom to deter me from scratching and making it worse. I do not get them on my hands or feet though. They seem to pop up in random places like my inner thigh, my belly, back of neck, really random.

During intense periods I would need to take antihistamines but these days I use a menthol stick to sooth the itch and luckily it goes away.

I’m just wondering if others itch like me (random hives) or do others get it very specifically on certain parts of your body like the hands / feet?

Thank you so much for your time.

Wishing you all well xx

[butterflyEi]

I used to itch but it was not the creepy crawly symptom as often described. I had the sensation of hot needles coming from deep within I also had in my left arm the feeling that the muscles were twisting and being sliced. My discomfort was more in the upper torso and occasionally in the scalp although occasionally in the palms and soles of my feet. I never had a rash.

My itch is controlled with medication.

[FarahS in reply to butterflyEi]

Thank you butterfly!

[Lindz1]

HiYes mine comes up like hives too, unfortunately it does not respond to antihistamines so I don't get any relief when I have the itch. It comes up all over my body. I did stop taking Ocliva as last time I had them I discovered if not taking ocliva they went away. Hope that's helpful and good luck they are horrible.

[FarahS in reply to Lindz1]

Thanks Lindz

[Wocket]

I get itching on hands and forearms. Sometimes my feet. It’s red blotches with some red spots

[FarahS in reply to Wocket]

Thank you, Wocket, hope ur well!

[sonshine]

yes. Awful but I nvr see mine. It’s just overwhelming itch! Aterax is the only thing that somewat relieves

[FarahS in reply to sonshine]

Thank you sunshine for your reply. Hope ur doing well.

[mrsreddave]

Sorry you’re struggling with the itch! It sucks!!!

Mine aren’t like hives. But I get it all over…mostly feet (that’s the worst) but hands, belly, thighs! Menthol cream helps a little…At least stopping me itching at night. I’ve actually given myself blisters on my feet from running where it itch’s too much.

I’m starting to really think lifestyle plays a big part of it for me. Stress seems to aggravate it! It’s still a point t of discussion each time I see the doctor and I’m starting to accept it might just be one of those things I have to live with!

Hope you find a helpful way to at least lessen your symptoms! But I feel your pain!

[Vivity]

Colestipol helps greatly. As soon as I notice the palms of hands and bottom of feet start to itch, I know to take Colestipol as otherwise it will get worse....much much worse!

[alpha3]

Sorry I'm so late in replying to your post Farah, but just catching up with EMails. Your comments could have been written by me. I didn't have the itch for the first probably 9 years of my diagnosis but for the past 18 months it's been awful. I get Hive like spots with intense itching, if I scratch they break and can be quite sore. once I habe the hives they remain there for a long time and continue itching. They appear on my back, stomach, legs and arms. I recently made an appt. with my GP who prescribed a steroid 1%. I've only been using it for about three days so far so can't say if it will work. Also once the hives have gone, they leave marks on my skin some of which i've had for over a year. I agree with mrsreddave who replied to you and think that stress aggravates it. mine started at a time when i was experiencing a lot of stress due to family illness. Hope you manage to find a solution.