Colestid Orange ( Colestipol Hydrochloride)
5.0g any one taking or tried this for the itching have been on Questran Light did little help for the itching phoned my consultant yesterday and he said to now try these one's same type of horrid powdered drink but just wanted to know if they might be a better one or am I living in hope. Take Care
Hi again Cavi just reading that post. Have you been on the Questran long and what way are you taking it. I used to just take one before breakfast and before lunch and supper for many yrs but did help a little but the one little tip I got from the PBC foundation (Cheers again to Colette and Robert) last yr when I was going out of my mind with the itch re taking one before and one after breakfast has really made a difference to the day time itch. Also there are other meds such as Rifampicin and Naltrexone that some people have found have helped their itch. I am seeing my consultant next week and am going to ask again about trying the Rifampicin again (last time I tried it was still on Urso and now wonder if maybe my being on the Urso stopped my having a good effect from the Rifampicin). I will write a wee post to all once have seen my consultant let you all know what he says. Where do you live Cavi? I am in N.Ireland. Bfn. x
Hi Littlemo Thanks for your advice I will give this a try if no joy with the Colestid orange have been on Questran Light since Jan helped only a little and the itch still driving me mad,i wonder why taking it before and after breakfast it makes a difference to any other time of the day did Coleen and Robert say .Do you not take Urso any more I know you may have said why in one of your older posts but just carn't remember reading it .Take Care. Oh forgot to say im from the West Midlands.
Hi Cavi yes this advice was given to me by Colette and Robert re taking the Questran they said something maybe to do with putting down a base to catch the bile when stomach is empty (i.e. before breakfast) and then after breakfast taking it helps to maybe break up the bile and so reduce the itch at least I think that was what they said seems so long ago now was back in July-Aug last yr when I was at the end of my tether with the itch.
I went off the Urso last August as a last resort to see if it would help my itch. I based my decision to do this on an article I had read about a new drug called Obeticholic Acid that is being trialed for PBC (which sounds similar to Urso, i.e. Ursodeoxycholic acid) in which the patients that possible are on it reported itch as a side effect to taking the drug, some r maybe all (cant remember fully) of these patients had never had the itch before going on this drug. Also I got a copy of my first LFT back in 2001 and compared it with my then most recent one in July 2012 and found that overall the levels had not changed all apart from the Bilirubin and the Albumen were also still abnormal despite having taken the Urso religiously for 10yrs and so felt that maybe the Urso was not making any difference to my levels anyway. So went off it and low and behold my itch lessened and went back to milder more tolerable levels withinn two weeks of being off it and has more or less remained that way since. PROBLEM is since coming off it my lfts have shot away up including sadly the Bilirubin which is currently sitting at 51. My Albumen however is normal which is something. I am seeing my consultant later this weeek so will be asking what I need to do to keep my liver stable for as long as possible. I will hopefully write a post on here after that to let all know how I get on. Bfn take care.
Sorry just re read that it was meant to read all my LFTS apart from the Bilirubin and Albumen were all still quite elevated to more or less the same degree in 2012 as they were back in 2001 when I had first LFT done when I first presented with the symptoms of PBC namely Extreme itch, joint pain and fatigue the worst for me being the itch which I have had always to a greater and lesser degree 24/7 for 12yrs worse like most "itchies" being at night.
Hi Cavi , The Mayo Clinic has me using a lotion called Serna ~ it is bought at Walmart and although i freeze after using it ( its a mixture of camphor and menthol ) it has helped with the itching . Best of luck
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