Itching

Hi can anyone help please ? I have PBC and I'm going mad with the itching , been applying calamine lotion as I'm not sure if there is medication I can have to relieve this

Thanks in advance

[Hidden]

Hello Rebecca67.

Yes it is annoying and can send you mad having the itch of PBC. I started itching intensely early 2010 and diagnosed with PBC December 2010.

The urso for me has altered the itch, I prickle at times during the day but it is around 11p.m. I start itching usually every night and it doesn't vanish until around 6a.m. Causes broken sleep at night.

Unfortunately there's nothing that we can put on the skin itself to eradicate the itch, only temporarily relieve ourselves and it is short-lived.

The first line of medication for the itch is Questran brand name or colestryamine. I've not taken any medications for the itch as mine is tolerable these days and some nights it isn't as bad as another.

The list that is apparently used for itching in PBC is on an article I posted on here about 6-8wks ago now (click on my user name and then go through my postings) and you can see from that what the medications are and hwo they are supposed to work.

I've not asked for the first line colestryamine due to the fact that it is hit and miss as to if it relieves the itching. I don't want any additional side-effects as I've only taken the urso since diagnosis and no other meds over the counter or from a doctor.

[Hidden in reply to Hidden]

Hi peridot

Thank you for your advice .

That's the worst time for me ,, at night 😱 does drive me crazy . If this is the only symptom I get having the condition then I guess I can count my lucky stars ! Other suffers of PBC are having a lot more symptoms than me .

Fortunately I don't have pain , suffer from heartburn / indigestion but I guess it could be worse. I will look through your posts , I did sign up to this forum when I was diagnosed but then I closed it as I was really struggling to accept what was happening . But hopefully I'm in a better place with it all now so will battle on . Thank you once again 😊

[Aspengirl]

Ask your dr about Zoloft. It is an antidepressant, but it greatly reduces the itching. I have been on it 8 months. and basically don't itch at all.

[Hidden in reply to Aspengirl]

Thank you 😊

[butterflyEi]

Hi Hidden

I am an itcher of long standing. When under the care of the GP I was prescribed cetirizine two tablets twice a day. This anti histamine is available over the counter in the UK. It worked for a short while then they tried something else but unfortunately I cannot remember the name. I was eventually referred to a hepatologist and have started on the route of other treatments. I take the two sachets of colestyramine one before and one after breakfast. (these I managed to get from the GP before seeing the hepatologist) unfortunately the colestyramine did not stop the itch so Naltrexone was added to the mixture. Naltrexone did not suit me and I have been given Rifampicin. This has reduced the itch to something very tolerable but I still have the underlying irritation. I also use as recommended by the specialist a 2% menthol cream which I keep in the fridge. It is only a temporary fix as it seems to confuse the skin with a burning sensation. The last tablet on the itch is sertraline (I think that is how to spell it). Naltrexone, Rifampicin and Sertraline apparently have to be prescribed by a specialist as none of these drugs are licensed for the use of itching in the UK. When all else fails I revert to ice straight from the freezer!

If you are a member of the PBC Foundation there is a very good article in the members section of the Bear Facts magazine by Professor Neuburger, I believe it is the Spring 2015 issue.

From one itcher to another I hope you find something to resolve your issues.

best wishes

[Hidden in reply to butterflyEi]

Thank you for your advice buttetflyEi.. I know it's all trial and error at the moment and I'm sure there are other people a lot worse off than myself , but it doesn't stop me feeling miserable 😬I know I have to be patient as my consultant said after starting me on the urso that the itching will be worse before it gets better 😱. But I will try something in the bath first , once again I thank you 😊

[Rockie]

Rebecca. You have my sincere sympathy, I know how it feels. I bath in Epson Salts and use soap and lotions with no perfume. Also cut out gluten and fatty foods and must say I find it is making a difference. Every few weeks I get, like I call an attack, suppose it is when the bile ducts are badly inflamed. ,

[Hidden in reply to Rockie]

Thank you for your advice , very valuable advice may I add 😀 my mum said I should try Epsom salts or bicarbonate soda , thank you , may I ask ,, do you suffer with acid ? Heartburn ? If so what do you use ?

[nesrin]

hi

completely cutting the consumption of sugar and twice a day on an empty stomach twenty-twenty-five grains of dry black crushed grape seeds in the air waiting, consume an additional amount of chew in the mouth. However, only consume remove the kernels dried black grapes, to consume the fleshy part.

turkce.cevirsozluk.com/

[nesrin]

Do not consume sugar. Twice a day before meals in the stomach, and twenty to twenty-five grains of dried black grapes crushed in a mortar core, without ADO, in the mouth, chew and swallow a little bit more. However, dried black grapes just remove the seeds and eat it, itching sounds good..

a little know english.

[Pat_H]

I take Questran and it is the only medication I've found that almost stops the itching. When the itching first started for me I was scratching so much that I caused bleeding. I was prescribed Questran and within a few days the itching had calmed down massively. That was several years ago; now - so long as I take my Questran regularly - I have very little itching.

However, recently I had Bell's Palsy, and was put on high dose steroids for 10 days. During that time I stopped taking Questran as I was concerned that it would stop the uptake of the steroids. During the 10 days I didn't itch; however, when I went back onto Questran it took several days to get it back into my system, during which time I scratched to the point of bleeding again. Now that Questran is fully back into my system, the itching is very little, some days I get no itching at all.

[Hidden in reply to Pat_H]

Hi pat

Thank you for replying , I have a gp appointment next week where I want to discuss whether I can have questran .

I know a lot of people are on it or have been on it ,

My only concern is that they say my liver has damage to it because I have been on long term medications due to back problem , and I didn't know if taking anymore meds would make the problem with my liver escalate . But thank you I will keep you posted . 👍

[Pat_H]

Hi Rebecca

I've never been told that Questran can damage the liver. However, just because I've never been told that it doesn't damage the liver doesn't necessarily mean it's true, just that I've never been told!

Pat

[Hidden in reply to Pat_H]

Hi pat thank you .

I have to see gp on Monday as without going into too much detail since I increased the dose of urso I'm having terrible diarrhoea, had to speak to a pharmacist this morning and they gave me there own brand of Imodium .. haven't taken any yet as I'm just waiting to see how the rest of the day goes , but under instruction if pharmacist I can't reduce the urso unless my gp tells me . So lots of things to discuss on Monday . I also had results through post today and I have a dilated bile duct which is quite significant, just want to know if it's part and parcel of PBC ,

Thank you 😊

[Pat_H in reply to Hidden]

I hate saving it, Rebecca, but when I first started taking Urso, sometimes I had diarrhoea and sometimes I was constipated. It took a little while before my body got used to it. I can remember being out shopping and having to find a loo as a matter of urgency, followed by extreme constipation - and I had never had constipation in my life before and hadn't realised how awful you feel with it.

All I can say is, it's OK now - several years down the line.

Unfortunately our auto-immune system is attacking our bile ducts and eventually blocking them. I've tried to make sense of what happens with our condition and, my very simplistic understanding is that, when we eat the liver sends out bile to help emulsify fat in our food. When we've finished digesting the food, the surplus bile attempts to get back into our liver but can't, because of the blocking of the bile ducts, and so goes round the body irritating our nerve endings with the bile salts contained in the bile, thus causing the itching. Again, my simplistic understanding of Questran is that it collects some of the bile going round our bodies in our bloodstream, taking it out of our bodies via the digestive system.

[Hidden in reply to Pat_H]

Pat thank you so much for your valuable information , you are extremely clued up , I feel bit of relief now , I know it's still early days for me and a lot of people , but when I was up every 20/30 mins through out the night last night it gets a bit wearing and exhausting . But hopefully things will soon calm down for me once again thank you it's appreciated very much xx