Hi I cannot sleep tonight. My legs are itchy & it’s been driving me insane for the past hour. A bit of background info. Newly diagnosed, incidental finding, no symptoms that I was aware of. I was asked at my first appointment “Do you get tired, do you itch”
Yes I’m very often tired but I put that down to working, kids, running a home etc all the usual things so I don’t actually know if I’m just tired because of that or if it’s the pbc.
Itching, yes I sometimes get itchy episodes but again, I never really thought anything of it. However the past couple of nights my legs have been so itchy it’s kept me awake. I’m now wondering do I actually have symptoms or is it a coincidence. Any thoughts on this would be appreciated. Thank you 😊
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Karaxxx
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I'm sorry that you have been itching. I don't get much of it and don't take meds for it but of the people here who do, some of them have tried meds and can tell you about that. butterflyE1 is someone who has a lot of experience of suffering this and finding a worakble med/s.
It is possible that you don't have pruritus that comes with PBC but even if you do there's help out there. It sounds like you have a consistently demanding heavy workload and that doesn't sit well with PBC which needs you to take a break sometimes when others who don't have PBC wouldn't need to. Can you arrange somehow to factor in clear times for youself, free of the needs of others so that you can relax and enjoy some time regularly? It isn't a luxury, it is one of the most important ways that you can manage PBC. Non-PBCers don't understand unless it is explained to them that though you may look fine your body fails to fire up it's engine at times and there's nothing you can do but accept it, and there's nothing they can do but understand and accept it too. This means you won't waste time or energy telling people over and over about what stops you. With more free time for yourself you can find the best understanding and management of PBC. Have you down-loaded the PBC App? I find it very helpful. If it appeals to you, maybe you could investigate it when you have a regular ime for yourself?
Take care. Be kind to yourself and set the standard for others!
Hi, thank you for replying, yes I have a pretty heavy workload with always trying to juggle everything, I hear what you are saying, I guess I need to try & slow down a bit. I did download the pbc app & they sent me some information leaflets through the post. I haven’t told many people about this just my family & closest friends but I don’t think they really understand any of it. Neither do I to be fair. It’s a lot to take in. You are right, because nothing is visible people will assume you are ok & I get that. Life really is unfair sometimes isn’t it.
I do really appreciate your support on here, you always respond to my posts & it’s good to be able to talk to & get advice from people who are going through the same. As you say, some people don’t understand & I feel the only ones that do are you guys. Not one person that I’ve told has ever heard of this disease & neither had I. 😊
Hi Karaxxx, I’ve had awful itching and my consultant has put me on Chlorphenamine with sedative to help. It’s a antihistamine. It’s early days but anything would be an improvement. I find it’s worse at night especially in bed. Possibly a question you could ask your consultant? Jane x
I have had bouts of itching that pop up periodically.. AND before I was diagnosed I recall having nights here and there where I would wake up and find that i had been scratching my lower legs so much that there was blood.. I thought maybe it was bugs biting me.. crazy.. but no evidence of same... Well once I was diagnosed it made sense to me looking back.
Like I say for me it's not daily- and so far its manageable but I have so much compassion for women here who get no relief from the itch..
Hi Eileen, that sound just like me... before all of this looking back I have had episodes of itchy legs but never really thought anything of it.
I wouldn’t say at the moment its unmanageable I just find it a bit strange that for the past 3 days I’ve had it & today has been the worst. I’ve just put a post on about the urso. I’ve only been on it a month & was wondering if it’s that 🤷♀️
I have suffered for 2 years with bad itching and it was insane at one point. I am not currently taking meds for it as nothing worked. What I find works best for me is putting the itchy area in very cold water or placing ice on it to numb it. After a couple minutes the itch is gone!!!
I too suffer from the dreadful itching and at night it gets qirse. I take children's liquid benydryl it helps me sleep just 1 cup ..My hepatologist is okay with ut. I've tried several drugs that others mention on here nothing helped. I am currently waiting to see if what's next for itching. Last month appointment dr said he was looking into me having procedure he described simlar to going to dialysis room. He said they put in IV as I sit for about an hour
It will remove bad toxins and that patients have gone a month without itching. Sorry I cannot remember the bane of the peocedure. I pray you find relief I've itched daily since August 2018. I waa diagnosed after second liver biopsy in July 2018. Bleasings~
I've had intense itching for nine years. Driving me crazy at nights at the moment and losing so much sleep, so I'm extremely tired all day. I've refused other medications suggested by my Consultant as I can't see the point of putting myself at risk from side effects that could also cause kidney problems etc.
I feel your pain Kara the itch has drove me crazy for more than 10 years though I'm not long diagnosed with pbc. I've tried everything. Everyone on here is great and I've posted about my torment. It's great to know we are not alone. I'm so envious of those who don't get the dreaded itch. My GI has started me on Questran and Rifampicin I hate taking so much medication but as last resort I'm giving in. Hugs
Thank you for all of your replies, this site is an amazing source of support & I’m so glad I found it. Itching has been pretty bad today however, I’ve had a thought & wondered what people think.
I’ve only been on urso for 4 weeks, could this be a side affect of the medication? I’ve looked on the leaflet & there’s not much at all on that about side affects. It just seems strange to me that for the past 3 days I’ve been itching terribly, not just my legs either. I don’t want to be putting every little thing that goes wrong down to pbc & sounding like a hypochondriac so I am wondering if it’s the urso causing it. Can’t seem to find much online about this. 🤷♀️ I’ve thought about other things. Washing powder etc but I’ve not changed anything & I’ve never been allergic to anything before either.
It is listed as a side effect. Maybe your body will eventually adjust and itching will subside?
I take Zyrtec daily as I have indoor-outdoor allergies- it's an antihistamine. Maybe you could try Benadryl for a little relief? (Consult dr. Of course)
Oh gosh, there are so many on that list! Im not sure if I feel better knowing it is a side effect or not. If it is I hope it will subside. Today has been difficult.
Don't panic regarding the side effects listings. Most of us eventually adjusted to URSO.. although there women who were literally allergic to it ( rampant hives etc)
As you are just 4 weeks in to taking it maybe you can ease in to full dosage? Many of us did that... build up to full dosage as body gets used to the URSO.
Also regarding this recent flare of itching... it could be just that- a slight flare that will resolve.
Use coping methods that work for you- lotion, ice, etc.. distract yourself from it if possible..
Hi guys. So I had one of the gp’s from my surgery ring me today about the itching, firstly he thought I was on urso due to gallstones?! Clearly hasn’t read my notes before calling me or didn’t read them properly! He then proceeded to tell me to “just stop taking the urso for a couple of weeks... that way we will know if it’s the tablets or if the itch doesn’t stop it’s my liver & will need lft’s” I’m not sure that I should be taking this advice. I was told by my consultant that I need to take these, have repeat bloods after being on them for a few weeks & I’m seeing him again next month. Really conflicting advice from my gp I feel.
I think maybe I should just carry on taking them & wait for my appointment with the consultant. 🤔
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