I have been taking 750 mg Urso each day one 250mg breakast 500mg teatime for 2 months now,i carn't say that it is helping the Itch at all if anything some days it feels worse, does this take a longer time to get to work i so why dosn't it help sooner, my blood tests are much better so it must be working but not on the Itch.I know a lot of people on here take Cholestyramine (i think thats the one) does this get rid of all the Itching,is this a tablet or powder also does this affect your blood test results when taking it .Just like to say a BIG thankyou for all my other questions that you answered for me,i have so many things going on that i need answers to so im sure i am in the right place,i just carn't explain how i am feeling right now i am far far from myself i feel i don't know myself any more if this make's any sense. Thanks again and all take care.
How long does it take !!!: I have been taking... - PBC Foundation
How long does it take !!!
Hello cavi.
Wish I could really help you here but unfortunately for a lot taking urso for PBC who have the itch it doesn't actually vanish.
I started on urso Dec 2010 and I thought that by the 2mths mark it was actually making the itch feel worse BUT I also did suffer a few other initial side-effects (bloating and heartburn). The latter 2 did vanish but the itch, well that started to diminish slightly and odd days I have to say I didn't get it. I've always suffered with it at night-time and still do I have to say even after taking urso now for just over 2 yrs.
The itch did drive me mad back in 2010 and also 2011. Last year when I had a few days of no itch I started to feel I was on top of it all and without the itch I would feel normal again. Sadly I still do itch. I have to say that last couple months it has subsided a bit more and I think perhaps it is either due to my bloods getting much much better over time (tho' they have bounced up and down a bit in last 2yrs tho' not significantly) or the addition of milk thistle once a day along with the usual one 300mg urso of a morning and one 300mg urso at evening meal.
Not sure if this helps but I did a bit of an experiment myself later last year and also earlier this yr with regards to urso. I did read on this site that someone had been informed that they can take all their urso in on go, morning best so I gave that a go as I would prefer if possible to take just one tablet per day. I have to say that I gave up after several days as for me taking the 2 tablets of a morning with breakfast simply made me itch more and I'm not a daytime itcher normally but I was for those several days.
I have also tried chopping the tablets in half and taking 4 halves per day. I felt ok but have to say the itch didn't seem any different from my 2 per day and I somehow didn't feel right taking them in halves so back to 2 a day. Find the best time for me is with breakfast and just before evening meal.
Apparently Questran (or cholestryamine) can help for a lot but sounds it is hit and miss and can take a few months to start working apparently. From what I can gather but someone who is on or has been on it will have to fill me in here, it can alter the bloods. I am loathe to try anything for the itch as yet if possible but it is each to his own at the end of the day.
The one thing that kept me going after starting on urso, even tho' I still tend to be a bit sceptical, is the fact I started to see the bloods coming down. I do seem to think that once the bloods get to a certain down level then maybe it is possible the itch can diminish even more as the system copes better? At the end of the day have to say this itch thing is SO bizarre.
thanks for the info yes i do agree this Itch is something that unless you have got it you will never understand what it's like .When i see my consultant i have a list of questions for him to try and answer for me,i find him very good and i do put my trust in him,but at the end of the day he hasn't got pbc like we have so how on earth do they know how we feel.What strength milk thistle do you take and how often do you take it. Thanks
Hello cavi.
The milk thistle I originally tried last yr was by mail order (Nature's Best) but found the tablets not quite to my liking.
So when those were done (even tho' I had good blood results after using for a mth then), I bought a bottle of Holland & Barratt capsules which you can if you want to break into hot water and drink like a tea (take note the milk thistle does not dissolve) and tried those. I prefer the capsules and these are what I've been on since December.
Got a drum of 200 capsules for around £12 late last yr. They are each 175mgs and contain 80% silymarin which is the actual ingredient in milk thistle. I just take one per day with using the urso.
I have got good results from using it on my repeat bloods early Feb as last Oct's had taken a bit of an incline from May 2012 (when I had taken milk thistle a mth prior to May 2012 bloods).
I have to stress that it has been said by a lot on this site (quite rightly) and also not something that other organisation would endorse but I've not informed my doctor that I'm taking milk thistle. That's my choice. I think if it is mentioned on the pretext my next bloods are even better than this I would state I am taking a milk thistle. With the bloods it can't be anything detrimental otherwise might have been mentioned in event any of the others were suffering but they are not.
The milk thistle label states on it you can actually take more per day but for now I'll stick to the one. I somehow do not want to overdo it if that makes sense.
I've not been asked about the itch in detail by the hospital doc or the GP. I did origninally mention 2 months into taking urso when I saw the hospital doc that I thought I was itching more frequently and he said if I thought it was down to the urso, up to me whether I took or not! I thought that was such a helpful (not!) comment.
I had an itch for many years and nothing seemed to work until last year when I started using Aquious cream with menthol three times a day. This is available only on prescription. This doesn't stop the night itch completely but brings it down to a bearable level but daytime had stopped.
I too use aqueous cream, bought a cheap 99p tub of it in town as opposed to E45 and on a day when I'm not having a bath I smear it down my legs, rub in and then rinse off with warm water. My legs then feel smooth and not dry as the itch can do this as we know.
I did buy a small bottle of E45 bath oil and you only use a capful which apparently can span for around 30 baths. I find that that has helped somewhat but I occasionally chuck some Epsom Salts in the bath with the E45 as I also find that helps. (Found on its own the salts make your skin a bit dry.)
I normally have a bath at morning as opposed to night as I feel much better then. If I bathe at night I tend to find I start itching that bit sooner most of the time, probably that open pore thing due to the warm water perhaps?
Actually menthol crystals can be bought over-the-counter (Boots do them) still. I've only ever used put in hot water for the vapours when my son used to have a bit of a chesty thing when younger and my husband now, later last yr we got some, never used but my brother used for his cold.
Could you not put this menthol in the bath as well as the E45 bath oil? That way would save on scripts.
Maybe try pine tarsal in your bath. It stinks but when my itch is really bad I have a pine tarsal bath and it relieves it so I can at least sleep.
How long did referral take?
Hello
Is it ok to take iron supplements with PBC?
To take or not to take Urso!!!!
