Dealing with bad itiching

Hi, I am new to this community. I was diagnosed with PBS 2 months ago. I have had many questions. I deal with the fatigue occasionally, but am currently dealing with really bad itching. My scalp itches my legs, arms face almost all over. My doctor did give me Cholestrymine, for the itch. I tried it this morning, didn't seem to help, I took a shower and smothered "gold bond" medicated powder on and took another does of the cholestrymine, then it did help . Any suggestions with dealing with the itching?

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  • Hi Krazy girl . Sorry to hear about your itch. It has been part of my life the past 7years. You get better days, and terrible ones. I try asd watch what I eat,no gluten, but no cream etc has helped for me sofar. I scratch until I bleed. Best luck

  • Hi Crazy-girl

    I was diagnosed with PBC some 10 years ago. I itched in the beginning and was advised to take anti histamine tablets. One a day used to work okay but about two years ago the itch became very active again. I spoke to the GP who gave me a prescription for a higher dose anti histamine. This worked for about a year. The itch is now constantly with me again, most of the time I can live with it but occasionally the itch becomes so bad that I use an ice block to cool the area of my arm which is causing the most problem I also have a cooling spray that I use - both give temporary relief.

    Everyone seems to find their own mechanism for coping - from cutting out sugar, gluten, fats or drinking lot of water, not good for us to get dehydrated, to topical applications such as I have mentioned above. Keeping the skin moisturised also seems to benefit some but it is good to keep the skin supple to lessen the damage we do with out fingernails and scratching.

    best wishes

  • When first diagnosed really itched on legs after about two years no itching - I put it down to diet knock off the fats and sugars, as my liver has improved in how it copes with cleaning the blood then I think the toxins have lessened and subsequently this has helped the itch. Others on the site have tried and haven't been so lucky you just have to be prepared for the long haul as nothing happens at any great speed with this illness.

  • Hello krazy-girl.

    Well from one who has itched since early 2010 (diagnosed with PBC Dec 2010) I can tell you it's not a nice thing to live with at all.

    I have tried allsorts of things but have to say nothing really has helped and at best the itch has been relieved for a short time.

    I started on urso Dec 2010 and urso is said to not particularly have much of an impact on the itch of PBC but it can help and seems to vary from patient to patient. For me the itch used to be 24/7 in the early days but then over time it shifted to night time. I get prickles during the day if I find myself sitting down for a short period of time and find it better to be on the go most of the time to avoid this feeling.

    Due to the itch being thought to be due to used bile that we are struggling to deal with in PBC due to it being in the bloodstream, that is more than likely why I reckon we can feel the itch any part of the body. My theory is that this used bile reacts with all the nerve endings causing the itching sensations.

    I've tried bathing with Epsom Salts in the water over the last few years as these are said to be a way of ridding the body of toxins by opening the skin pores. I have felt temporary relief. I find for myself it is far better to bathe morning as opposed to night. I've tried honey and vinegar in the bath, makes the skin feel good but only temporary. Porridge oats in an old 'pop sock' gives the skin a silky feeling when used in the bath but for the itch for me not much in the way of relief. I have even bought the E45 childrens' foaming bath milk and the Junior Oilatum (cheaper than the adult versions) but they dont' seem to give me relief nor make my skin feel much better.

    Keeping cool certainly works to dampen the itch I have found. Heat sources, especially now it is winter in the UK causes me hassle where prickling during the day and then feeling the itch goes.

    I've not yet resorted to being prescribed the first line Questran (or Colestryamine) due to it seemingly being hit and miss as regards to the itching. I did read that if this is going to work to alleviate the itch it might take some time to build up in the system so your first dose wasn't probably enough.

    There is a mention of pruritis (itching) of PBC in the Liver North dvd all about PBC that they can send to you for free. This dvd covers the various medications that can be used for itching. I'll pop t he site link on for you to request your copy if you want to do so.

    Hopefully over time with the urso alone or with the Colestryamine too the itch subsides for you.

    livernorth.org.uk/

  • Hi Peridot. Your explanation of this PBC itching is exactly my body. Today is one of those days that I have just not enough hands. Sometimes I wonder what would happen if I just stop eating. Already cut out gluten and fatty foods. The anti histamines help for a few days and then the body starts fighting that as well. If it was not for the itching, I would not have complained, because the other aches and pains I can deal with. Go well

  • Ive had times when the itch nearly drives me mad.a few things i find help....keep as cool as possible especially feet...

    I spent one winter wearing no socks or slippers and when i went out i wore clogs with no backs.the anti hystamine helps a little i find but it doesnt get rid of it.have you been sent to a liver specialist...there are proper meds for the itch so you need to see someone to prescribe these

    I also find the more ive done the worse the itch.also i find if my diet has been richer e.g over christmas...then the itch can b worse butit ususlly takes a while to kick in so that might tie in

    Have they said you can have any alcohol at all...i was told that i coild have the odd glass but i found i didnt bother as it just made me feel bad.hope this helps a bit but go back to docs/consult and get other meds.best wishes.cazer.

  • Hi there , short post but give the cholestrymine to work with the ursofalk. I has severe itching and it took over my life it was horrendous, I take cholestrymine 3 satchels once a day mixed in juice not nice taste and 4x250 urso , stick in there and good luck , x

  • Hi, I have been prescribed cholestyramine two sachets a day, it took a few days to start working, only thing with me was i was never off the toilet, I reduced it to one a day and have now reduced to taking one sachet every other day, I find the best cream that works for me is johnson's baby lotion and nivea soft for my face. If my scalp itches I have put optrex eye drops on it to cool it down. I have tried all the posh creams they advertise and also double base from my GP and not had as good results as the johnsons pink baby.

  • Hi, I sympathise with you about your itching, I have been there. As for Cholestrymine this takes a while to work up to a month I was told. However one of my consultants prescribed me a creme called Derma cool. This is a Menthol based creme but it works, just apply it to the areas affected. It was supplied to me by prescription but I but it can be brought over the counter. I hope this info will help you..

  • Thanks, all for your feedback. I am on Urso Forte 500mgs. Twice daily. When I couldn't stand the continuous, itching yesterday I did take a shower then put "gold bond" powder all over me. It has menthol in it and seemed to help. I also took another dose of the cholestrymine, but didn't add so much water. Seemed to help. I am allowed to take the cholestrymine every 2 hrs. Read more about it too. It's says to keep taking it to keep it built up in your system . The texture and the taste are terrible. I tried putting it in applesauce but I nearly threw that up. I hate to shower daily. It's winter and it would dry my skin out even more. The doctor is sending me to a dermatologist so I will see what he says too.

    Krazy-girl

  • Is your cholestyramine orange flavour sugar free, I make mine up into a long drink and sometimes shove ice in it.

  • Hi Krazy -girl . I know the feeling of this terrible, horrible itching that we PBC sufferers must deal with. Mine seems to get worse and I cut out so many foods, like gluten I don't touch, any rich food. Creams I have tried so many, but it is from the inside. Sorry but I don't have a solution. You have my sympathy

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