I saw the specialist this afternoon, as an itcher not cured by cholestyramine I was prescribed Naltrexone which gave me some very unpleasant side effects. I now have a two month supply of Rifampicin which I understand is an anti biotic.
I think anti biotics can destroy the good gut bacteria so is anyone able to share their experiences with this drug. I am wondering whether eating yoghurt with bifidus will help to keep the balance right. Or maybe taking acidophilus?
I am so fortunate that this specialist is a very pleasant young man who is proactive and not dismissive but at the time I did not think to ask him about good gut bacteria.
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butterflyEi
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I took this before and it made me jaundice, so was asked to stop for three months then try it again. Just to be sure that it was the medication or if it was another factor causing the jaundice. Again it made me jaundice. I guess it doesn't usually do that though and I was disappointed that I couldn't continue it because it was working for the itching. I can't remember what I took with it though it was a few years back. Sorry.
The specialists first trial was with naltrexone but I had a bad reaction. I sleep in batches of two or three hours and nowadays as I am retired nod off in the afternoon.
Butterfly Ei I tried Rifampicin twice and had a very bad reaction to it. My Pharmacist told me normally it was subscribed to people with TB and it is an Anti Biotic. How on earth can a person take such a medication on the long run? I immediately stopped using it and never will consider,because I never felt so sick in my life after taking those pills
The hospital pharmacist was very informative before handing over the prescription. Apparently I have a lower dose of it than would be given for TB. I feel much the same towards Naltrexone as you do towards the Rifampicin. Thank you for your input.
It seems that whatever they give us seems to cause problems but the itch had worn me down so much I must give something a try. I am hoping not to have problems but I did with Naltrexone just need a break from the itch.
My wife was prescribed rifampicin twice. She was experiencing Avery low quality of life due to the itch and the drug was life changing. She took it for 6 months and the itch just about disappeared. It stayed that way for a further 6 months. She was prescribed it again when the itch returned but the second time had no effect. Give it a go but arrange for regular liver function tests while you are taking it. It is a very strong drug but unfortunately there are few other options left.
I'm on rifampicine, first a lower dose (twice a day 150 mg) with good result but it could be better, now on a higher dose (twice a day 300 mg) with fantastic results for 6 months, no.Itch! Now again some itch but far from what it was (terrible, no sleep, legs full with hemstoma from scratching). In combination with questran allmost no itch. I have no side effects from the rifampicine. Questran how ever.... I get obstipated...
Good to read your reply, thank you. I am also on Questran but the light version. Pardon the expression but get dreadful wind with the Questran Light. I am so pleased to read of someone getting on with the Rifampicin - it gives me hope. I am currently on the 150mg twice a day. Fortunately with a very high vegetable diet, almost no meat nowadays and plenty of lentils and pulses I am able to avoid the constipation problems.
Hi ButterflyEi, sorry for not answering your question, but what unpleasant side effects from Naltexone did you have and what dosage was it please, Kandypat
hi i am new here i have fibromyalgia i have been researching Low Dose naltrexone for the last six months I think your dosage is much to high Go on ldn now and it will give you and your Doctor all the information you need. It is by Dc Chris Steel, on this Morning. I hope that you find site interesting.
I was first prescribed 150mg twice a day and did not have any noticable improvement. I was then prescribed 300mg twice a day and noticed an improvement after a couple of weeks but make sure you take the rifampicin well away from food or drink such as tea with milk water is fine. When first prescribed I took it in the morning then had a cup of tea with milk and found little benefit, spoke to the pharmacist who suggested that I took the first tablet when I had my early morning bathroom break (around 3 or 4 a.m.) and the second tablet I take around 5p.m. which is well after lunch and a good hour before dinner when in that time restriction I only drink water. However as part of the treatment for the so called itch of PBC I am prescribed cholestyramine, rifidin at 300mg and 25mg sertraline and have some peace although the itch still breaks through but it is something I can live with now. I also use a 2% derma cream as a topical application. I hope this is helpful.
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Unable to take Urso for PBC
Hi, just wondered if anyone with pbc has been asked to take part in a clinical trial? 
Does anyone have problems taking Urso, I am having mega problems with diarrohea and stomach pain,
Does anyone use epsom salt to help flush toxins from their body? (Either by bathing or taking a small amount orally)
Should I take this Urso?
