Shall I Give up !!!

Have been on Questran Light now 3 months taking 2 drinks per day before meals but the itching is still as bad do I need to give them more time to work or if they was going to help with the itching should they have worked by now my blood tests are all getting better my ALP is still 436 but has come down from 820 in a couple of months the other's are near normal so why still going mad with the itch have they not worked for any of you and is there anything else for the itch I have tried every cream you can mention but with no joy any answer's my friends x

7 Replies

  • Hello cavi.

    Well I started with the itch in 2010 and that was when I started with blood test, scan and then hospital consult appt. I had the AMA blood test and was diagnosed with PBC Dec 2010.

    For me the itch has never left me despite my bloods slowly coming down over the last 2 and half yrs now.

    The itch isn't as bad as it was originally but it is still there and normally of a night time when I start feeling prickly early evening and then by 11p.m., I know I have it.

    I've not taken anything other than urso so far as I want to stave off any additional medications and moreso as it is known sadly that Questran (or cholestryamine) can work for some, not for others.

    I understand that one is started on Questran first of all to see if it works and then there are other medications you move on to. Not sure how long you have to give Questran but I am sure there are other contributors to this site who have been taking it/have taken it and if it has worked for them they'll have some sort of gauge for you.

    For me I have tried missing things out of my diet, taking other things that are apparently good and have to say that some days I find I hardly itch at night, others it is prevalent so I am a bit dumbfounded there myself. Seems on a 'bad day' if I have eaten something I'd not normally consume (ie had an 'out of the blue' for me fast food lunch today, one pasty) then like today seems so far, the itch is pretty much holding off well. I do think that once PBC is known and the itch is a sympton, I seem to think that it is a case of a balance between fats in particular and the urso as when we consume fat the gallbladder normally empties bile to start breaking it down but in our case we are adding a synthetic bile to a compromised system.

    I have found to be helpful but only short term, an half hr bath couple hours before bed and in the last few months I have put some of the emollient oil in (E45 or Oilatum). Something I've never used before but find it does keep my legs in particular moisturised so less damaging if the itch is to surface. On the alternate nights I don't bathe I rub some of the aqueous cream BP (I have found some in a drum cheaply - 99p - that is probably the same as the E45 but miles cheaper) onto my legs and then rinse off, that helps awhile. I am one who only tends to itch on my legs below the knees and feet these days. I do have the odd itch elsewhere at times (ie arms and thighs) but it's not significant like my legs and feet.

    I did once think that perhaps once the urso had helped the LFTs come right down to practically normal/near normal (I don't think mine are ever going to be normal as altho' not bad, not normal or very near normal after 2 and half years on urso), the itch would perhaps leave me for the foreseeable future due to the digestive system being much much better but I think that perhaps once there has been some bile duct damage, the compromising of our system may not help how bile is utilised so the itch I think could be permanent.

  • Not to stress you but all my questran has been recalled by chemist due to contamination. Please phone or see your chemist as soon as possible. The sugar free version is fine. Ask doctor for this. I'm also taking an anti-histamine which seems to be working better than questran as there was always issues with production(questran) every year. Can't take any other meds due to side effects.

  • Talking about meds which have been recalled, here in NZ we have recently had a recall of Aqueous Cream because it contains one of the no no additives which are in lots of over the counter cosmetics. I know perfectly well which one it is but it has gone out of my head right now!!! My GP has prescribed me Fatty Cream instead but it has a shorter best before use by date. The pot I have now seems to have only 6 months.

  • my alp was at 2100 when i was first diagnosed.. got down to 900 after a year, but when i got on the tricor with my urso, it came down to around 400, so that is my new normal for me. once I started the tricor, i no longer needed the questran. I don't recall the questran taking that long to work tho. If you are not on the tricor, i would definitely talk to your dr. about it.

    Hope this helps.

  • Hi i tried the questran an found it vile i have had a few other things but my local gp put me on rifampicin 150 mg 3 times a day an its has been brill its actually a tab used for TB an i dont have TB but it is also used for the severve itch that we suffer having pbc and for me it has been a god send i have now been on it for a few years now and it has helped me greatly i barely itch at all these days no more scratching holes in my skin it has been brilliant for me ask your doc it may help as you know we all react different to diffrent tabs but when my itch was bad i would have tryed anything as i was demented with the itch hope this helps x

  • Thanks to you all for the info I go soon to see my consultant and will ask him to give me Rifampicin to try I have heard of this but tried the Questran Light first but not helping at all as you say Suemac 1 when the itch is so bad anything is worth a try.x

  • i find questran relieves the itch, but not " light", but need to time it cos can't take other meds; for 4 hours??? what is rifampicin? I've not heard of it, also urso you all talk about? not heard of that either, all take care Petula

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