Hi, I was diagnosed with PBC last year through routine blood tests ordered by GP due to sudden constant tingling and prickling throughout body. Positive amas liver function fine at the moment.My feet are the only place I actually itch. I wake up each morning with incredible itch in the bottom of my heels. It all went away last year only to start up again two months ago. I literally can't wear jeans or tights as my legs and thighs start to prickle terribly. Is this a PBC related condition or an allergy. I'm at my wits end with it. Does the itch ever go into remission or is this a constant permanent thing. I am not on any medicaton for PBC as yet. Any help would be much appreciated.
Prickling in body: Hi, I was diagnosed with... - PBC Foundation
hi circe i have had the itch for about 5 yrs but only diagnoised 2 yrs ago ask yr gp for balnium cream and balnium bath oil it really helps it tends to come n go it is pbc related hope this helps. just one of the many joys of this disese ( not ) why have you not been given meds i would ask yr specialist i have had a liver biopsy last yr and was told i am stage 4 i also have overlap osteoporosis cervical osteoarthiritis and spondolosis not bad to say i never went to docs until 2 yrs ago i was as fit as a butchers dog lol although i have suffered anxiety and depression for yrs hope you are feeling well soon any questions please post on here we are a friendly lot and all in the same boat xxx
Hi Sophie and thanks for replying. My GP thinks I'm a crank and just keeps on giving me steroids and antihistamines. I'm literally going out of my mind when I get dressed as it seems to trigger this tingling prickling feeling in my thighs and legs almost immediately. Also I've noticed when I eat it seems to bring it on. The itch starts in my feet upon waking and fluctuates throughout the day. I can just about live with the itchy feet but the prickling is terrible and can be quite painful. My gp just says oh your lft is fine so it's not that what's causing it.
Hi Cricle 14. I would suggest you go and see Liver Specialist. This PBC is complicated for GPs
Hello again circe14.
Back in early 2010 when I started itching the GP recommended I buy Piriton an antihistamine for the itching. This was before he had results of bloodwork that showed me to have abnormal LFTs (liver function test).
If you have something like PBC an antihistamine won't be of any use. The newer version these days tend to be non-drowsy as the one I bought over-the-counter was (Piriton, was the same mgs as the GP would have wrote on prescription but cheaper to me as I pay prescription charges in the UK).
I have read on here previously that some who itch badly do resort to taking the drowsy antihistamine and I believe they stated it just drops them off to sleep as opposed to dealing with the itch.
I know if my LFTs were to go back to normal now on urso I'd still more than likely have the itch I reckon. It's one of the 2 commonest symptons of PBC (fatigue is the other. I did have fatigue back in 2010 but at some point during 2011 it vanished and don't have, get tired later in day due to broken sleep).
I think you perhaps should get in touch with the PBC Foundation and request their PBC leaflet specifically wrote for GPs. Or you might suggest them taking a look on their website or even the Liver North one as I have found it tends to cover a lot on PBC and you can read their newsletters present and past on there. There is a DVD you can request too for free all about PBC from LIver North. I got one several yrs ago (my husband saw it all unlike me). I'll pop the link on for you. I know it covers treatment for itching in PBC as I did see this part on it.
Hi. So sorry you are having this problem with your doctor.
I would ask him to put you on urso right away. If you have a diagnosis of PBC I would think it very irresponsible of a doctor to say "you're fine" and not start urso.
My itching comes and goes. My greatest problem is unrelenting fatigue.
If you cannot get a better response from your doctor perhaps you can see another.
My old GP was just the same ,most gp s no nothing about this desease, are you under a specialist at the hospital, if so they should put you on Urso , if not Why not? I was refered straight off , Hope you get some answers , I know the itching drives me mad, but find it comes and goes, I have had this PBC now for over 10 yrs, and find the fatigue more debilitating than anything else. but have learnt to just give into it and rest, easy for me as Ive retired, Try not to let it all get you down, certainly try the Balnium cream from docs, for the itching, I certainly will, Best wishes, this is a great site as we are all in the same boat, so lots of great advice and support, Mylo2
I have bouts of itching and currently I am active again with the itch. The GP has me on a high dose of Cetirizine which is an anti histamine. I used to take an anti histamine one a day on the advice of the first specialist some 10 plus years ago. I was immediately given Ursodeoxycholic Acid also called Ursofalk on diagnosis which I believe contains something to help with the itch - but I do not know that for certain.
If you are not yet a member of the PBC Foundation then it is worth joining (free to join). They have a magazine called Bear Facts which usually has an article relating to PBC health.
I understand that the sooner you are on Urso the better your outcome. I would suggest a return visit to the doctor to find out more.
Hi honey I cover my self in e45 (cream not lotion) after every bath/shower. It helps. If you've not joined the PBC foundation then I suggest you do so. You need a little more help from your gp. & they can advise you in this regard. They even have a leaflet specifically for your gp. Cause there are still many out there who are not really up to scratch with our lovely condition. You need to go on urso & see a specialist & your lifts aren't always the best indication they fluctuate all the time. Mine were fine this time round but I'm failing never the less, my symptom list is growing quickly. Please join & help yourself, they've been a God send to me. X
Sorry to say, but I dont think the itching will ever go away, as mine is getting worse. I
Strictly speaking, if you test positive for AMAs, but your lfts are fine, then there is not enough, yet, for a formal diagnosis of PBC. However . . . because you have one of the common symptoms (eg definitely the itching, & maybe the tingling is a variation of this) then the third formal test for PBC (after AMAs, plus LFTs ) is to have a biopsy.
Have they done any other tests - ultrasound and/or fibroscan of the liver? Or an MRCP? If you have one of the diagnostic criteria (the AMAs) plus symptoms, they should be following up.
Also, if you just have AMAs they should have given you a load of other tests to rule out other autoimmune conditions, as often there can be other things going on.
I would contact the PBC foundation (link to their site at the top of this page) and talk to one of their advisors. Get the up-to-date info from them, and their site, and then go back to GP - maybe ask to see a different one ... one others recommend. Take someone with you as a support, someone who is willing to get up to the mark, and understand the condition. Also, ask first for copies of all your tests and details, so you know exactly what they've done and said - would be helpful to have this when you phone/email the PBC F.
Hope you get sorted, soon. Take care, and try to stay calm: autoimmune conditions thrive on stress, so treat yourself, try to have fun, and relax - but also trust yourself and take action.
I remember back in 2010 when I started to itch my feet would itch terribly and I found myself stamping my feet a lot. I also started to find I could not wear certain items of clothing. Bras became a nightmare for me.
I was diagnosed with PBC near the end of 2010 after 9 months of itching badly and started taking urso the standard line of treatment.
Slowly over time the itch altered and I now find I only itch in my feet, ankle and toe areas late at night. I used to struggle to even crouch down if I had to as where the knees bend, it would start to feel unbearably prickly at the backs. I find these days I don't actually have that same problem anymore.
I am under the impression that if one is asymptomatic in PBC, that is without symptons and normal bloodwork then urso is often not given but if you are symptomatic as I have always been then you are given urso. Itching isn 't apparently something that the urso can rid us of as goes the same for fatigue that is a sympton in PBC but it is said that itching in particular can improve. I find these days I am not so bad during the day, it is later at night I start feeling itchy and it frequently causes broken sleep during the night.
I think with the itch there is no way of knowing if it will subside or get worse. It is said it is of no correlation as to how we really are with the PBC either, some itch, some do, some never do but others go on to develop it.
The only way I often get through is to say to myself that the itch is due to my body defending itself against those toxins that the liver is struggling with. It is a secondary way of ridding ourselves of them via the skin but unfortunately it causes this itch. My theory here is that the used bile reacts with all our tiny nerve endings and that is why it can happen any place on the body. I suppose it figures in a way that certain areas are more affected than others due to the bloodstream. I think when we bend our knees for eg the blood is more restricted so it causes us to prickly and probably itch.
I've not resorted to trying the first line of defence as yet, that is Questran or Colestryamine (as I believe it is known in the UK) as that can resolve the itch but it seems it can be hit and miss as to whether it works.
Unfortunately we have to eat and this is what causes the used bile. I tend to have my own cut off from eating and that is the evening meal when I take the final urso following. I think this might be why my itch has subsided a lot. I sometimes do have a couple plain biscuits with a drink in the evening if I feel inclined.
Hi Peridot. I notice you are very knowledgeable with this condition of us. I wish you a good life, you are still young, (I am 75 next month) and you went through a rough time. A lot of this PBC, I believe. has to do with stress. My son was 45, died suddenly last year, and 3 months later my husband. Terrible to loose your loved ones. I do not think I will ever get over the loss, just try to deal with it day by day and keep busy. Have a Blessed Christmas you and your family
Just wanted to say, how sorry I am for your losses. Its always harder this time of year! Thinking of you, and pray God brings you comfort and strength to cope. God Bless!
I had such bad itching on both feet that I would scratch it soooo hard . Happy to say that since I have been on URSO the itching has subsided. Good luck to you.
Hello. I had the very same thing myself (I am pre clinical PBC) and before I got diagnosed I kept telling the GP that I felt very short (up to 1-2 sec) of sharp stinging type sensations. This wasn't an itchy feeling but as I say sharp, horrible stinging pains. Everyone I'm sure thought that I was mad at the time. anyway, one of the things that I did before I eventually got my diagnosis (its been a 5 year journey) was to experiment with cutting things out of my diet. I found that wheat and gluten seemed to trigger the stinging sensation which would make my body feel as if it was on fire and also would cause parts of my body (limbs usually) to swell.
Having cut both gluten and wheat out of my diet I am almost 100% better when it comes to the stinging sensation that I was once plagued with.
A few weeks ago I had a consultation with my hepatologist and when I told her about the wheat & gluten issue, she responded saying that over 60% of people with a PBC diagnosis have 'gluten sensitivity/enteropathy' and as such ,its best to avoid both.
Hope this helps.
Hi Nicky . Since I cut gluten and wheat from my diet, I do not struggle with the fatty loose stools anymore, but the itch I do know must be from all the toxins in the liver. Here in South Africa they give us Ursotan to thin the bile in the bile ducts.They get inflammed and I think mine is like that all the time. I am just sorry for young people suffering from this condition. I am nearly 75 .
I've just seen too that your symptoms commence after you eat; this is exactly too what happened with me and even more reason for you to suspect an allergy to something (most likely gluten/wheat).
Thanks everyone 😊 I have only once seen a gastroentologist and he didn't say much just felt my abdomen and said all feels fine. I had these symptoms in April last year and eventually they went away now they are back with a bang since the beginning of October . My feet drive me mad upon waking and during the day but the prickling when I put on my clothes is worse than anything. I can wear loose track suit legs at home and that helps enormously but not suitable for day time wear unfortunately. I also feel a lot of prickling in my chest. I do have a slight hiatus hernia and silent reflux .. I am not taking mess for the reflux any more as I'm terrified of any damage to liver .. I appreciate everyone's feedback. I also live in Ireland and I can't seem to find out much information here.
Nicky that is exactly the same feeling as I get. Stinging prickling. Most uncomfortable.
I am losing the will to live !! Prickling and stinging with occasional itch all over me. Discharged from seeing liver specialist as my lfts are fine. Just told to get bloods done twice a year. No medication. My gp useless she just says take antihistamines its an allergy. It just comes on me throughout the day. Usually after i get dressed. Im in complete despair. Liver specialist said it is not typical of pbc. Nothing visible on my skin as such. Occasionally an itchy pinprick but very very occasionally. Mostly painful burning stinging prickling all over. Ruining my life. Any hel0 greatly appreciated. ☺
Hi Circe14, I had that awful prickly type of itch. I only scratched it because I didn't know what else to do. It would just suddenly start anywhere, not ristriced to hands or legs or feet. It came very suddenly and it was not something I could ignore. Turned out it was a drug I was on. Can't tell you what it was because i was on a trial. I described it as raging prickly heat at the time. The trial was stopped and the prickling stopped a day or so later. Just wondering if it could be a medication you are on? I feel for you because it drove me mad and I was glad when it stopped. Good luck getting to the bottom of it soon.
I am on absolutely nothing. I dont even take vitamins. No drugs of any description except painkillers occasionally for headaches.
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