Hi All I'm wondering if anyone is having problems with itchy feet, it's driving me insane, it's the only itch I have,

[Jaycee]

I have had itchy feet for ever, I'm wondering if it's a symptom of PBC,  is there anything I can get to help,  I have osteoporosis, underactive thyroid, also have dry eyes and mouth, I also have something called Hidradentis Superativa, has anyone out there heard of this, it's another autoimmune disease, it is not very pleasant I can tell you, sorry to complain, I know there are those of you worse of than me,but it just feels good to get it of my chest, my hubby understands to a certain extent, but it's good to talk to others who really understand, sorry for rambling on, hope you are all keeping as well, as this thing will allow, thanks for listening, Best Regards to all,

[boneytoys]

Mmmm this is very interesting to me. I have had one itchy foot for about a week now but am also treating it as some sort of fungi infection as I saw some dry bits on my foot. I read up about athletes foot and it can make your foot really itch. So im on the fungi cream for both and doing a vinegar soak at night. If its not that its a symptom of PBC for sure

[butterflyEi]

Hi Jaycee

No wonder you are feeling the need to share, what a lot to put up with and itchy feet is debilitating.  I use an exfoliating back scrubber on my feet.  It is a long thin hemp with two handles.  After I cream my feet.  I also use an antihistamine against the itch as recommended by the doctor.

For my dry eyes I use Systane Ultra which I find suits me very well.  Other eye drops I have tried did not work as well on me.

Hope this is of some help

best wishes

[Hidden in reply to butterflyEi]

Interesting that you state that you have been recommended an antihistamine by the doctor butterflyEi as the itch in PBC isn't allergy related unless you have one of the antihistamines that cause drowsiness as I have read on here previously that some do take this to sleep through the itching.

[butterflyEi in reply to Hidden]

Hi Peridot

Yes we have had this conversation before.  The specialist at Portsmouth over 10 years ago suggested a one a day anti histamine.  It seemed to reduce the itch.  After the death of my mother my itch went ballistic.  It was a very stressful time.  I tried all sorts of things but in desperation I telephoned the surgery and spoke to a GP who said and I quote "for people like you your doctor prescribes" and then gave me a prescription.  I am not sure about "people like me" but the anti histamine calmed the itch.  You have advised me to check on the bilirubin as the tablet I am taking MIGHT raise bilirubin levels.  Our surgery is under tremendous pressure at the moment (there is a recording on their out going message to tell all their patients!!!!!!!!!!!!!) so I will wait to ask the question when I need to see a doctor.

best wishes

[Hidden in reply to butterflyEi]

Hello butterflyEi.

Have you tried emailing your surgery with your question.  I have emailed mine a few times (Practice Manager direct).  I did get replies back rather quickly.

Yes I remember now reading about it can raise bilirubin the antihistamine.  Posted on here notso long ago.

I know back in early 2010 the first thing the GP said to me when I went saying was itching before he did bloods was to write a script for Piriton.  I knew you could buy over-the-counter at chemist and checked was the same as the script so bought that.  I only took a few days as it just made me feel nauseous but didn't do a thing at all for the itching.  This Piriton was the non-drowsy formula, not sure if you have to get the drowsy one on script only.  

Out of interest have you ever tried the first line for itching, Questran (or in the UK as it is now known colestryamine)?  Be interested to know (if you've said previously forgive me as I've now forgotten).

[butterflyEi in reply to Hidden]

Hi Peridot

I must say it sounds like your surgery is ahead of the times.  There is no email facility at mine.  I can telephone for an appointment starting a 8.30 and be lucky to get through some time later only to find appointments for the day are gone.  So instead you can queue from 8 onwards and if you are there at 8 (the surgery moved from a 10 minute walk away to a 10 minute drive away) and others have not been queueing earlier then you can get an appointment or a telephone appointment.  It is possible to book a forward appointment though which can be anything up to 4-6 weeks away.  I once queued for an appointment having arrived by 8 a.m. only to find that being 15th in the queue that there were no more appointments by the time I got to the front of the line.  I have on two occasions written to my GP the first letter never had a reply, the second letter I followed up with a visit so we worked through the letter.

I tried Piriton and found it useless.  I have not been offered Questran or Questran light and I have not asked for it.  Whilst Cetirizine works for me I will save Questran for when I really need it.  Some of the side effects seem to be possible problems.

I have thought of changing surgeries but the doctor I have now is very nice and seems to know what she is about.  She mentioned that her mother had PBC so feel she has some background knowledge of the condition.

on the bright side we have a beautiful morning although I suspect it will be a bit cold when I get outside.

best wishes

[Hidden in reply to butterflyEi]

Hello once more butterflyEi.

I am not with the same surgery I was when I was diagnosed with PBC but can't say it is a brilliant one. They might appear to have their EMIS online up to date now but it is only recently that medical records I can see of mine in some condensed form have appeared. My brother-in-law mentioned over 6 months ago that his medical records were online at his surgery. I cannot email the surgery via the EMIS online system as for some reason they never seem to get the messages. I have the email address of the Practice Manager though that patients can email queries with though. 

The surgery I am at you have to ring at 8a.m. too for an on-the-day appointment if they deem it so when you ring. I've never had cause yet only being registered there for 2 and half years to ring at 8a.m. but my brother has a time or two (he's never gone in person for an appointment on the day, got a call back from a GP. This is my brother who never goes to the GP too). Due to Government changes with GP surgeries in recent times, it seems that if you are a child or retired person over a certain age (think 70+) then you automatically are supposed to be seen on the day so where does that leave the rest of us? 

I do not feel that I get good care at my GP surgery. This shows one how good they are. I had bloods done December 2015 and the GP rang me as opposed to having me go in in person as I didn't want to wait for the appointment a week later. The GP specificlaly said to me that if I forgot to go in for repeat bloods in '3 months time' I'd be reminded by someone from the surgery as it would be bookmarked. I usually book my own appointments but get fed up of having to explain when I ring for the appointments for repeat bloods so thought this time I'd wait and see if this bookmark system was working. Well I should have gone for the bloods before the end of March, we are now in April as we know and no-one has contacted me! 

I sometimes think the GPs do not know how to use a computer (none of the GPs seem to know how to mark my records that every time I have bloods after a GP has seen them I can have a print-out, always a big issue - well it shouldn't be next time as my blood results from 2010 are online now for me to see). I also think the system where it seems that beurocracy takes over these days taking away patient time. GPs once of a day would do their own bloods or over 2 decades ago when I went in and GP ask for one, I got asked to wait in the Waiting Area and the nurse would see me in-between patients and do there and then. These days you have to book the appointment and go in a week later, well that is how it is at mine. 

I do find the best way to see if you can get an appointment as soon as possible is to keep checking online if you can access the EMIs system that enables you to book, change, cancel appointments and order prescriptions. I have been successful with this a few times regarding this PBC lark.

[Chrisprio]

Hi Jaycee,

I do have itching feet at times but it comes and goes. I don't know why it goes so I can't help with that but I do sympathize and I certainly don't think you are rambling.

My main symptoms prior to diagnosis were dry eyes and mouth and constipation (my consultant later diagnosed Sjogren's syndrome). I've changed my diet and eat prunes, apricots, milled flax, pumpkin and sunflower seeds with my breakfast. It has made a huge change. I still use Boots intensive eye drops occasionally but not every few hours as I was. I also think that eating sugary foods affects it.

Wishing you easier times with all you're dealing with, Cx

[Hidden]

Hello Jaycee.

I started itching all over early 2010 and was diagnosed with PBC December 2010.  I recall back in 2010 pre-urso of being at work and actually having to keep stamping my feet as they itched.

Itching is a sympton of PBC and I'd say that unless there are anything visible to see on your feet that might be causing the itch as opposed to it being PBC-related then it is more than likely this PBC.

I don't tend to have itchy feet during the day anymore.  Over time taking urso my itching altered somewhat.  I feel prickly at times in the day (wearing a cardigan or jacket for eg can cause prickling in my arm crook that then causes me to rub as does bending down with my knees bent where the backs of them are) but at night I start to itch anywhere really but once I go to bed it seems to be from waist down.  My feet and toes do start to itch.  I reckon because of the blood flow we get itching in certain places at certain times.

I wish I could suggest something to ease the itch but unfortunately I am still trying to figure this one out after 6yrs.  It is so annoying and at times can get you down.  I find I spend a lot of time fidgeting if I have to be sat down for certain periods of time so try to keep going all the time, not easy if you get broken sleep through the night and then start to feel tired in the later afternoon.

[vicky15]

you poor thing...  and itching to top it all off is a nightmare..  I itch like crazy, my day generally starts with a light itch but my evening time I feel like peeling my skin off, and my feet are the worse part.. 

I find running them under cold water is great relief, also frozen peas...  I then use a cream called moogoo which is really great for relieving it.. I take an antihistamine but don't think it does anything really..

I hope u find something that works for u... 

[kingerm]

I slap loads of moisturiser on all the time and try to wear natural fibres . I lowered my own does of urso but I don't recommend that and I'll see on Wednesday if I have slowed down my progress or not liver wise but I don't itch near as much as I was. 

[liver-bird]

Hi Jaycee - sorry to hear you are suffering.  I too have underactive thyroid and osteoporosis and sometimes my eyes get dry. 

I find the itching is worse if I get hot, so I try to keep cool and use lots of moisturiser.  I also itch more if I have had rich food, sweets or chocolate - but sometimes I risk it!  

Try experimenting with different things and see what works for you.  We all seem different.  Let us know how you get on.  Best wishes  Diane

[Pea1234 in reply to liver-bird]

I also itch when I eat sweets - chocolate. I still enjoy it from time to time. 

[Sandie1]

Hi. I also have dry eyes and mouth also itchy skin, I have to admit my skin is not as bad now whether its because my body as got used to Urso? I do have another problem which is driving me nuts!! its itching down below, I have tried  a number of creams, (from the doctor) nothing works. I read somewhere if your immune system is low can cause this. I am seeing the specialist on Friday, so I am going to ask is this because of PBC and is there anything I can have for relief. Does anybody else have the same problem ?

[liver-bird in reply to Sandie1]

Hi Sandie - this can be a sign of diabetes so make sure your blood glucose levels are tested just in case.  Best wishes  Diane

[FullEmbrace]

I have had Hydradentis Superativa (HSV) since adolescence.  But no itching.  i have Dry eyes, and Fatigue. I am so interested  to know if there is a connection with HSV and PBC. There  is a group on health unlocked you can check out for HSV.if interested. I'm sorry you have so much you are dealing with but this is definitely a great place to seek out helpful strategies. Take Care

[Jaycee in reply to FullEmbrace]

Hi There, I'd be interested to know how to get in touch with the group you mention, HSV is very rare and it would be good to know I'm not alone, Thank you for your reply, Keep well,x

[littysgirl]

Yes, I do. My itching so far seems to be primarily the top of my feet and my ankles - both areas where the skin is very thin and if I'm not careful, the skin gets torn. I am finding some relief but putting lotion on the areas that itch when I realize that I am scratching and then try to do something with my hands that distracts me from the itching. After a few minutes of the lotion and doing something different, the itching seems to go away. 

[Kate50]

hi , I suffered badly with itch from pbc with my feet being the worse, can't seem to stop it but could get short term relief from cold, so I would resort to placing them in cold water, on the cold tiles I have also at times sat with them in my freezer 😳 Another thing that brought relief was spraying them with a freeze spray the kind you get for aches, I feel for you hope you can find something x