Stupid flipping itch!!!

Hi everyone.... I found out in august I had Pbc x have been on ur so from then, 500 mg. meant to be on 1000 mg but my stomach can't tolerate it. I first started itching in dec last year x it went away but it's been back with a vengeance this last week or so x it's driving me up the walls! Was wondering if it's the urso getting into my system that's doing it or maybe my diet. Consultant told me I didn't need to change my diet but Pbc website says differently. Also questran x antihistamines aren't working heeeelllllp......

17 Replies

oldestnewest
  • Have you just turned your heating on as the hotter dryer I get the more I scratch

  • No not even that...... Doin my flipping head in

  • I agree the itching has returned this week.. Maybe the sharp change in weather x

  • I am even sweating more at night, the more I sweat the more I dry out and the more I itch, how can you sweat more when it gets colder. Hope it calms down a bit for you hun XX

  • Thanks guys think il give consultant a ring tomorrow cos I think this would kill me quicker than the pbc!

  • My itch calmed down when I reduced my carbs, sugars, salt, etc. I do not know which own is the trigger. I went on vacation during the summer and ate normal and my itch came back. I ate "clean" again and my itch is almost gone again. It took several weeks. I also think my itch increases during my cycle.

  • Hello Dmb1.

    I know exactly how you feel, I started with the itch early 2010 and by the end of that year was diagnosed with PBC.

    I thought at the start of taking 600mg daily urso from Dec 2010 that the itch seemed a bit worse but I persevered with the urso to find out 2mths later what the bloods were like. I had pretty good results so that made me continue taking the urso.

    I think knowing that a side-effect of urso can be pruritis which is the itch I think it is possible to have the itch whilst on urso but at the same time the liver is improving and the system is becoming mroe like normal after a period of time taking urso that though the itch might vanish, the urso is still causing it. If that makes sense?

    Over the last almost 3yrs as that is now how long been on urso, the itch has changed somewhat. I start itching mildly around 9p.m. but normally by 11p.m., I am itching and I know some nights I find I can't sleep and do feel the itch. My itch then vanishes around 5a.m. and I get up like I am perfectly normal.

    I too find like HeidiLucy that my itch seems a bit more aggressive at the start of my cycle and then it tapers off to how it normally is.

    Have you tried having a soak in a warm bath that you've added Epsom Salts to at all? I have actually found that that can be beneficial as the itch doesn't seem as bad. Not the answer to rid it but I think some things can be better than not.

    I think when you start urso you have to give it time. Two months on urso I'd say isn't really that long a time to really get a picture here. Have you had your first bloods since starting urso as if you have and they are far better, that will make you feel much better in yourself.

    I don't think, sadly there is anything that can really help with the itch. It seems that Questran the first line for attempting to resolve the itch in PBC appears to aid less than it helps judging from this site. I also believe that with Questran you have to give it months to see some difference if it is going to happen.

    I never was one for additives in food prior to the itch in 2010 (I am 49 by the way, was 46 at diagnose), I try to scrutinise foods now for things like MSG and I have never been keen on the artificial sweetners for one. I think eating more natural is a good way to go.

    I've never been informed I cannot eat anything as I did ask at the start of diagnose. The consultant informed me 'the liver likes calories'. Alcohol is something that is common sense I think. I was never much of a drinker prior to 2010 and after the first abnormal LFT that year I chose not to have alcohol anymore. Doesn't bother me due to this.

    I do think it is a good idea to cut down on the amount of fats in the diet now as bile acts like a detergent on fats and given we seem to be a bit compromised there due to PBC and the bile ducts being under attack, watching that area of the diet I think does help.

    I have to go on a budget at home with rising costs, especially the energy bills here in the UK at present but if I fancy a treat, I will grab a pack of organic biscuits in the supermarket. To me they tend to guarantee ingredients that aren't nasty. I did read that coffee is apparently thought to be good for the liver but only around 2/3 cups per day. I like to have a coffee with breakfast and one later afternoon. I switch to red tea after evening meal and tend to have one or two cups as it is hydrating and also no caffeine. I try to make a glass of my own fruit/veg juice/smoothie every day to have if possible.

    As lindaclark states too, if you find yourself in a hot room or feeling hot (not counting the sunshine outdoors) then you can tend to feel the prickles as I call them as I do.

  • My dr put me on tricor in addition to the urso and i no longer need the questran.

  • Thanks everyone for the replies. Peridot I don't get results until feb x even then I was only on the urso for 8 weeks when my bloods were taken. Iv cut out alcohol as well but the thought of having to check every single thing u eat sounds like a nitemare but if we have to do it. .....What is tricor, trojas?

  • Hello Dmb1.

    I think it is notso bad checking out food labels really. If you cook yourself it is relatively easy. Buying organic foods for instance, you tend to know that there won't be any nasties in them and I think it is worth it. Altho' I do not eat much in the way of red meat, even checking out packets of organic sausages for eg (most seem to be pork but you can get beef) is easy as the chemicals that tend to be in a lot of brands/supermarket own label do tend to have sulphites, preservatives, etc in them unlike something that costs slightly more and is organic.

    Of course just after the war back in the 1940s and prior to it, people would naturally be eating more organic produce than we do today due to farming methods not being as intense as they are today.

    I still think a lot of things today are caused by artificial additives and other chemicals that we all use. It's a very debatable subject but it could also be a very lengthy one too. I think sometimes we just have to take pot luck as the saying goes and not think about certaint things.

  • I had the itch terrible 18 yrs ago when diagnosed. I am up to 1250 of urso now, the urso is not the cause of the itching...........the best thing that worked for me because I was literally using forks and such to scratch hard, even until I bled, was a prescription called hydroxyzine(atarax), it is what saved me.......took a little while, but it helped me relax so I could sleep some. It is like a high strenght benedryll, I also used oatmeal baths/lotions, baking soda baths, and a menthol type lotion called Sarna............hope this helps, thoughts and prayers, cyndy

  • LOL! My "tool of choice" was a nail brush! My husband went bananas as it was making me bleed :( It's very difficult for someone to understand the PBC itch. I still have it but feel that after 10 years I have built a kind of "tolerance" to it. I take Questran (yuk!) and find baby oil soothes. It creates a vicious cycle of "itch, scratch, itch", do you find?

  • O my god must've been bad when u had to scratch with forks! Thought I was bad pressing different parts of my body up against my bathroom sink cos its lovely x cold lol. Hubbies away to get me baking soda so hoping that will help. its horrible this pbc isnt it :((

  • Hi,

    I gave up eating foods with sulphite preservatives and artificial flavourings. Sulphites are mostly used in dried fruits and vegetables as well as delicatessen meats. It is possible to find breakfast cereals without the nasties and I know that most foods produced in the US are free of them. I live in NZ and so things here are a little different from the UK but in the US the food authorities are more fussy about additives. So no more ham, salami, luncheon meats etc etc.

    The difference in my itch is remarkable so it is really worth while for me to be fussy.

  • Yes you are right judyt, I see sulphites are used in a lot of foods. I am fortunate that here in England, we have Sainsburys supermarket and their own brand basic label of sultanas that I use in cooking do not have anything other than just that, no sulphites unlike the dried raisins I noticed.

    I'm lucky I suppose if you can say that, I am not a consumer of cooked meats, salami, etc myself.

    I know if you can afford to buy gluten-free cereals alongside other breakfast cereals like porridge oats, they are worth it as they don't tend to contain any nasties either. At the moment we are wading through a large bag of brown puffed rice that has a honey coating and the ingredients are just rice and honey.

  • Hi Dmb1,

    Yes, this is a difficult disease to live with! I was diagnosed 7 years ago and have experienced all the usual...itching, severe joint pain, dizziness and horrendous fatigue! I too, use a fork to scratch my back on occasion! Not particularly elegant but very necessary, lol! At least, there are good days. The symptoms seem to ebb and flow and who knows why they're so much worse at times. I'm actually on 1500mg. Urso...I know it seems a lot but 3 tablets a day really were not helping. In the States, they seem to generally issue higher doses and this large dose seems to have improved my condition. I find that Atarax helps the itch and being hot, exacerbates it!

    I think you have to try out medications, patterns of rest etc and go with what suits you best. You soon find out your friends too, and they do not necessarily include family members. The support on here is great!

    All the best!

  • I get a tingling/ itching on my arms. my doctor gives me Eurax cream for the itching and I find that it works for me. It can be purchased over the counter but costs £6 a large tube. hope that helps you.

You may also like...