Increased itch

[Goldsworthyhelen]

Hi started taking Urso and itch driving me mad,worse than before . Any one else had this ? I did wonder if it was in my mind.

[Hidden]

Hi Goldsworthyhelen,

It most certainly not in your head, it is a horrible thing to deal with. When you say to others about an itch they don't understand, people on here do. Mine is that bad I either have bruises or cuts(I use a fork now).

I hope you get some relief.

Angela xx

[Rockie in reply to Hidden]

Hi there. I know the feeling. Have a big plastic pasta spoon that is next to my bed, My tummy always have scratches, looks like chicken pocks. Some days worse, and sometimes you get a good day. Depends very much on your diet. Horrible disease or whatever one can call it. Same with my tummy. If I ate wrong I get upset tummy. You cant really come and go as healthy people, but I suppose there are people worse of with other diseases, although this itching can drive you nuts. Sympathy to all

[rabjohn]

I have to take urso + Questran Lite + antihistamines + smother myself in menthol cream to take the edge of the itch - good luck

[butterflyEi]

My itch became really bad about two years ago. I tried alternatives. Doublebase cream keeps the skin soft and more supple. Having exhausted any possibilities without going to GP I gave in and following consultation I now take 2 Cetirizine in the morning with Omeprazole. This same dose is repeated in the evening. I then take one simvastatin and 1000 mg Ursofalk just b4 bedtime. I have found this works relatively well for me. Avoid stress if possible. I also now drink coffee following the post of another contributor.

Best wishes

[teddybear7]

It won't be the urso it will be your condition. I find that mine fluctuates some days are better than others. X

[ladyfrances1]

Started taking Urso in 2010 and itch did subside after about 3 months. Now though, the itch is back, just having cool showers and using sensitive calming cleansing milk instead of shower gel. PBC is is so frustrating and certainly has a mind of it's own, you seem to get a handle on one thing and another one starts. Lost sight in left eye for a couple of days and this is being watched quite closely, my sight came back on it's own but still a worry. Stomach troubles are a daily thing, as is bodily pain all over and fatigue wants to be my best friend as it hangs around all the time. Just try and keep smiling through all this, we had far worse outcomes before Urso. Just to add this is not in your mind, it is in your body, try to keep upbeat and try your best to keep cool and manage a smile. xxx Good luck and hope it settles down for you soon.

[Rockie in reply to ladyfrances1]

So good to know there are other people with the same condition, because I sometimes get the feeling that people think I exaggerate. Where I live I have'nt come across one single person with this PBC

[Chrisprio]

Hi Goldsworthyhelen,

On diagnosis I didn't have any itch and it was only when I started talking ursodeoxycholic acid that it started...and it was horrible. It lasted for a couple of months but then eased. I had read on the information leaflet in the urso' that symptoms could increase initially so I had my fingers crossed. Thankfully, I think it was my body getting used to the dosage and now, two years on, I have very little itch.

Having had it quite badly for a while I am hugely grateful that it's manageable now. It's there a little at night time and noticeable when I need to be still, like in the cinema, and yes it fluctuates.

I have huge sympathy for anyone who has it and I truly hope yours eases shortly.

[Rockie in reply to Chrisprio]

Hi Goldsworthyhelen. For me the itch is a constant irritation. Luckily sometimes it is bearable. Hope you are having an good Christmas

[allotment]

High Goldsworthyhelen!

Only relief I had from itching was when I was prescribed Questran. Itching was driving me mad and I was not taking Urso. at the time. We are all different with PBC and Questran works for some. Give it a try if you haven't already.

Best of luck

Allotment

[Hidden]

Hello Goldsworthyhelen.

Yes I thought the itch was worse in the very early days of starting on urso Dec 2010. I had a few other initial side-effects when I started taking the urso too but it was the itch that was the worst and I did contemplate giving up with the urso. I persevered until I had the first LFTs taken early 2011 and got good results so I continued.

Over time the itch started to lessen. I did go through odd nights and even managed a week back in the earlier days on urso of having no itch at night which it had become but I've not had a night-free of the itch now for around 2yrs. I am quite OK during the day but early evening I start feeling prickly and then this is followed at 11p.m. by itching in certain places (feet, toes, lower legs and even round my personal parts) and it doesn't vanish until around 6a.m. nowadays. Most nights I wake up at intervals and it is the itch that makes me feel uncomfortable causing broken sleep.

My only explanation is that when we start to take urso we are adding further bile as that is what urso is, a component of bile acid and then our system has to deal with that as well as used bile that we have naturally in our system.

The itch might as it apparently does in a lot of PBC patients change over time with urso but unfortunately urso doesn't take it away completely though I have read on here once that for one poster in particular urso did make it vanish but I think that might be only for a few of us.

[Wass71 in reply to Hidden]

Hi peridot, I was interested to read your post about itch because I have almost exact same pattern as you. I'm not on urso as having had different doses and for varying length of time it caused very painful lower abdo, diarrhoea and did nothing to my bloods. I am therefore labeled a non responder!!

Anyway the itch used to only bother me pre menstrally, and I would have a prickly sensation, like insects under my skin, on my face, hands, arms legs and like you my vulva. Which is embarrassing, and also very sensitive. I mentioned to my go and she said it could be thrush, but I knew it wasn't, because I didn't have other symptoms of thrush and the itch was on the outside, not the same as the thrush itch. Anyway lately I have found that this is happening most nights, not just at hormonal times.

Have you found anything to relieve the 'personal' itch? Its bad enough everywhere else, but when you are driven mad by an itch in a delicate area, which I have to fight with myself not to scratch, for damage as well as hygiene reasons!!

I hope you get some relief.

Best wishes

E

[Rockie in reply to Hidden]

Hi Peridot. Maybe I must increase my intake or Ursotan. I only take 400mg, was prescribed 900mg, but it is so expensive and I do use other supplements as well. All I know this is a very expensive disease and the Medical Aids have no sympathy. To get through some nights are a nightmare, even after taking a strong sleeping pill, the itch is so severe that it wakes you up. Good to hear from you people

[Hidden in reply to Rockie]

Hello again Rockie.

I only take the urso and pay a contribution on an NHS prescription as I do not qualify for getting them free in the UK. My gripe is that when we are diagnosed with PBC and there being no cure and the only medication that is available currently is the urso I do think it should qualify everyone to receive it free. That is if you are in England as in Wales and Scotland now and one part of Ireland prescriptions are free for all currently.

I say I think the urso should be free for all that have to currently pay due to the fact that in most cases it seems that it can hold back progression of the PBC thus saving NHS resources due to that patient perhaps not needing any medical in-patient care. But that is my opinion.

I have not taken any medications since 2010 and hope to continue as so. I count myself lucky currently with the PBC despite the itch as I know that some with PBC can get other certain health problems perhaps associated with it.

[Rockie in reply to Hidden]

I am in South Africa, Alberton. Close to Johannesburg, and here medical aid does not contribute as it is not on their list of acute medicine. Have a good weekend. Greetings

[Goldsworthyhelen in reply to Hidden]

I actually thought I had thrush but since reading posts think otherwise . How donyounease itch in personal parts?

[Hidden in reply to Goldsworthyhelen]

Hello Goldsworthyhelen.

I haven't got thrush. Now there is some auto-immune condition that can affect the genitals (forgets what it is) that causes itching, especially at night.

I've not got that, mine is due to having PBC as I itch all over my personal regions even my breasts itch at times.

I don't tend to use perfumed products in the bath. I do find bathing in Epsom Salts the odd time, Dead Sea Salts (I buy a large box in Sainsburys these days, especially boxed for bathing) and of a rare occasions putting porridge oats in an old cut off tight or 'pop sock' and strung on the bath tap can make the skin feel quite lovely. I find bathing in the morning more preferential to evening as I have noticed that if I bathe in the evening I do feel itchy sooner, probably due to just warm water on the skin as I find being hot at times can make me feel prickly.

I bought a personal area natural tiny spray for around £10 from a mail order company I have used for years. The ingredients are natural and can be an alternative for anyone encountering thrush or itching or soreness in the personal regions. I sometimes find just a tiny spray to the front, the coolness of the tea tree in it causes a good distraction (I don't use it in the actual open areas for want of better words). Vinegar diluted in a bit of warm water also is pretty good and I've bathed in that in the past to see if it made any difference to the itch (can't say anything really makes a difference as we know the itch is coming from inside our body, not surface).

I find if I sleep at night I can get over not feeling the itch. Last night was a good night for me, the first in some time.

[Rockie in reply to Hidden]

Hi Peridot. The itching part sounds just like my life, especially at night time. There is no ways you cannot scratch if the itching starts, but sometimes it is like attacks, and after a while it eases. I suppose we are a special group of people with this condition that most people do not even know about. All they think if you tell them it is a liver condition, yeah, must be drinking a lot, and has nothing to do with that. And everybody to tell you to use cream. There is not a cream I have''nt tried. Enjoy the Christmas Season

[dollydaydreams]

I have been trying to get in touch with my gastro for a week and yesterday was the straw that broke the camel's back when his secretary said he could not prescribe anything for me because my medical records where at another hospital, my husband politely told here that he should know what the standard medicine for this is without looking it up, any way things came to a head last night my husband had to help me scratch and my itch went berserk, from my head to feet. i even pulled handfuls of hair out it was that bad, I had taken valium and a double dose of piriton rubbed cream everywhere and slapped calamine cream on and anthisan cream, this morning I was in a hell of a mess and still itching, arms covered in blood and still seeping a bit now. Mike rang my poor GP up who does not really know a lot about PBC but he faxed a script through to asda straight away for cholestyramine and i had it in ten minutes, have taken one dose so please keep your fingers crossed that it works for me, I got that bad last night that if mike had not been here i don't think I would of been this morning. I have just calmed down a bit and only just managed to get out of bed so no hun it is not in your mind. needless to say I am now looking for another gastro.

XXXX

[Rockie in reply to dollydaydreams]

When my husband was still alive, he used to help scratching my feet, because two hands are not enough for such an attack. No specialist or doctor, unless they have PBC themselves, will realize what we go through. Creams, you name it, I have tried. Because the itch is from inside.

[dollydaydreams in reply to Rockie]

Yes I know Rocke, my husband helps as well as you need to be an octopus. My GP seems to understand that it's from inside and has given me three weeks supply of this cholestyramine stuff to see how i go on with it, ( he is a lovely GP and really tries to help but doesn't really know a lot about it but listens ) it hasn't worked up till now but I think I will have to give it time, i had to get up last night and sat up until 4.30 until a valium i took started to make me feel groggy. I have plastered myself with baby lotion last night and this morning, I just don't know what else to do, I have had the itch before but never like this, my palms also went bright red and i can see a slight tan to my skin, I had bloods done in OCtober and the gastro said they were okay, one alkaline phosphatase was high at 284 and albumin low at 34 and thats all I got told really, The gastro's don't seem to understand that when we need them we need them then and not in 6 months time when they deem to send an appointment.

Sorry but i am feeling Ratty, I feel like going to the hospital and smashing his face in.

[Rockie in reply to dollydaydreams]

I know and can sympathize with you as I had a terrible night as well. Then I get up, and walk up and down. Seems as if there is blood circulation it feels bit better. I dont know your age, but luckily I am nearly 75, because really it starts affecting ones quality of life. I may have had it for years, but only in 2009 it started to bother me, first the gastro and later the itching. Hope we both have a better night, because we do have our better days.

[dollydaydreams in reply to Rockie]

Hi Rockie, i am 65, i find if i get up and sit it stops but as soon as i lie down again it's off, I started to feel very ill when i was 57 and diagnosed at 60 by biopsy but my GP thinks i have could of had it for years, I had a hysterectomy and 4 pints of blood when i was 41 and have never felt well since.

[Rockie in reply to dollydaydreams]

I had a hysterectomy age 33. but never felt ill, even after at about 40 they said I had under active thyroid (I am thin) but this is the auto immune and later it attacked my liver also.Then the PBC was confirmed but then I was already 68.

[dollydaydreams in reply to Rockie]

I found out later that something had been left in as when i was first ill with PBC they thought it was non hodgkin's and opened me up to take a biopsy, the surgeon said he had taken and overy out while he was in there, I didn't have an ovary they went with the hysterectomy, so he just said well I found something and i am glad i got it out and that was all I was told. so I was walking round for over 20 years with something rolling around on the loose in there.

Anyway gone now just hope this darn itch does as well :o)

XX

[Goldsworthyhelen in reply to Rockie]

Snap exactly same !

[ladyfrances1 in reply to Rockie]

Sorry Rockie, I didn't spell your name correctly. I hate doing that. Hope you are keeping well.

[Rockie in reply to ladyfrances1]

No problem. Today was much better than yesterday, slept fairly well and itching was less

[ladyfrances1 in reply to Rockie]

I agree with you Rocky that the itch comes from inside, have stood in a cold shower for 20 minutes the other night. This eased it a bit, just before my itch starts I feel inside I am getting very hot before the prickling starts. Maybe our blood over heats more commonly at night time. i do try so hard not to scratch as I feel it just starts up somewhere else even worse, I slap it, pour cold water on it, even been known to shout at it. I have learned from a young age not to scratch an itch as I suffered with prickly heat all my life and could end up in a mess with the burst blisters. Hope you are keeping well, chin up. x

[Rockie in reply to ladyfrances1]

Shame. I know the feeling. It is impossible not to scratch, because this is not the itch people without PBC gets. Then people tell you just forget about it and use a cream. I use Epson Salts or Bicarbonate Soda in my bath and wash with non perfumed soaps. Have you also cut out gluten and fatty foods. I found that helps a bit for the liver and the bile ducts. Go well

[slinksterd]

my doctore gives me 180mg of FEXOFENADINE which is a strong antihistamine i dont have itch anymore at night it used to keep me awake .my gastro specialists wont give me Urso she said it doesnt always work.Worth trying this for your itch if you can get it prescribed

[dollydaydreams in reply to slinksterd]

Thank you Slinksterd, I have just added it to my list :o).

Urso does not work for everyone but I would have thought she should at least give it a go.

[Rockie in reply to slinksterd]

Thanks Slinksterd I will ask the pharmacist if it is available in South Africa and will then go for prescription. One will do anything just to feel normal again.

[Goldsworthyhelen in reply to slinksterd]

My specialist and GP said the same but wanted me to try it before dismissing it as there is nothing else out there at the moment. However itch driving me mad.

[slinksterd]

I hope it works for both of youse i had myself especially my legs scratched off me at night since i started the tablet ive named not an itch .Let me know how it goes i know one shoe doesnt fit all but anything is worth a try

[Rockie in reply to slinksterd]

You so right, anything is worth trying. Will let you know if I could get it

[Pat_H]

I've taken Questran from the very beginning of being diagnosed. I was prescribed Urso a little while later.

When I started taking Urso I found the itching increased exponentially. So, whilst continuing to take Questran, I stopped taking Urso and then began again very slowly - for the first week I took one Urso capsule a day, which I increased to two in week two, three in week three and four in week four. This worked for me. I don't know if it would work for anyone else.

When I undertook a medical trial I had to quit taking Questran for about two months. This was the worst itching I had ever experienced and my underclothes were covered with blood from my scratching. It's at this point that I replaced all my white and light coloured underwear with black garments.

So nowadays I take 4 Urso capsules in the evening, and three sachets of Questran during the course of the day and this keeps the itching down to a bearable level

[Chrisprio]

I agree that itch is too mild a word. I think it is more like my experience of prickly heat from over exposure to heat and sun. It is like needles painfully prickling from inside the skin. I really don't think people understand when we say itch. Just like tiredness doesn't match the weird feelings related to the fatigue.

Anyway, whatever our experience of this disease and wherever we are I am sending Seasons Greetings to all, with heartfelt gratitude for this online community, Christine x