I was diagnosed with PBC last summer and put on 1500 mg of Urso a day, I also take cholestyramine in the mornings. They could not advise of what stage I am in because the doctor who did my biopsy did not take a big enough sample (Ugh).
Anyway, I get my bloodwork done every three months; my levels at diagnosis were (ALP- 1128; ALT- 49 & AST-92), after taking the urso for a couple of months my levels in Sept were (ALP-640; ALT-65 & AST-50), I was pretty excited and felt pretty good, (I had some tiredness and itch but not too bad) I was working out and eating healthy, doing well. As I was going away for Christmas, I had my bloodwork done before I left, in case my over indulging with different foods affected me, so, my levels in Dec were (ALP-709; ALT-95 & AST-63), so, not better.
My GP didn't call me, so I assumed they were still getting better. (She said she thought liver clinic might call me, sure). I had to go in to see my GP, as since January, I have been so itchy all the time, and it was driving me crazy, I am tired and itchy and let's be honest, bitchy. I am having a hard time getting back into working out like I was and although still eating healthy, some bad foods are finding me, I like to have treats when I don't feel well. I told her how I felt and she tried giving me a prescription for ReVia, (naltrexone) which although a drug for treating alcoholism and drug addiction (of which I am neither, I rarely drank, almost never now that I have been diagnosed and have never taken illegal narcotics), she said one of its side effects is relieving itchiness, I read about this drug and it is not to be taken for people with liver problems, so clearly I am not going to be taking that, I didn't even get it filled. I am not sure what she was thinking and clearly she is not used to dealing with this disease, but it just leaves me itchy and sad. I won't be seeing the liver clinic again until late summer, so I don't know what to do.
Does anyone else feel that their doctor just isn't concerned? I cannot get a new one, it is not an option, there are a shortage of doctors here and waiting lists for any that might come. She has been my doctor for about 25 years and I am relatively comfortable with her.
Thanks for letting me rant. Just feeling out of sorts.
Written by
AllieCraw
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Sorry to hear you're having so much bother after doing well for a while.
GP's generally don't know a great deal about PBC so you are not alone there.
I have read one or two articles on LOW DOSE Naltrexone. It is sometimes used for other auto immune diseases such as MS as well as PBC, particularly in the US. The dosages are very very low (1.5 - 4mg daily) and so believed to be safe for those of us with liver conditions.
(The dosages for alcoholism and drug addiction are much higher so don't think your doctor is insulting you by giving it to you. I wish mine would)
There are others on here who know much more than i do. Perhaps they will respond in time.
Meanwhile try to keep positive and continue to take care of yourself
Aw sorry you're feeling so rotten with the itch...I think cholorestymine is used to relieve the itch, I've not used it myself. I have found herbal tinctures to help me with my symptoms. I think there's a lot of controversy about using herbal remedies, but these often stem from the fact that over the counter herbs often don't have much of the active ingredient. I get my herbal remedy made up for my by a qualified herbalist who is knowledgeable about my medical history and pbc. Might be worth a try. ..passion flower tincture is helping me with the itch. I did check with my GP about taking herbal remedies and she said it wouldn't do any harm, but please seek proper advice first.
Thank you. I have been considering doing to a natural remedy doctor. I live in a small town but there is a city nearby where I might be able to find someone, hopefully they will know about our disease or will look into it. Thanks again
Sorry to hear that you are finding things so tough. I wonder if it might be good to talk things through with someone at the PBC Foundation, particularly to get some information on your medication.
In looking up low dose naltrexone I came across this piece by Dr Chris Steele MBE and thought what he had to say was interesting in general, not specifically for PBC. I'd be interested to know what the PBC Foundation's thoughts are. You could maybe ask them.
Are you a member of the PBC Foundation? If you are in their members section you can find the Bear Facts magazine back copies. In Spring 2015 Professor Neuburger wrote an article on itching and medications used to help control it. It is very informative and although some of these medications are normally given to people who have addictions they also help us PBC sufferers with the itch - or at least are supposed to help.
My itch went ballistic back in 2014 after the death of my mother, I guess it was stress that triggered it. Since that time I have been in a trial and error loop. The anti histamine that I was taking stopped working so was given Cetirizine two tablets twice a day, this worked for a short while then I had to try something else which I cannot remember the name of but I had a bad reaction to it. I have since been prescribed Naltrexone which did not work for me but as I had read about LDN (Low Dose Naltrexone) I powdered the tablet in water and started the dose at 0.5 per cent and slowly increased over a period of about three months, I felt really quite well on the LDN, my nails improved and the itch was slightly better for a short while but then the itch got the better of me again. I am now on Rifampicin (Rifampin) and although the density of the itch is reduced it is now over more of my body and on my face! I have also been prescribed Cholestyramine which I have been taking since last summer. I also use a menthol cream at 2% which seems to temporarily confuse the itch but it is only a temporary measure. I did have a cream at 0.5% but that is not strong enough.
It seems though that if your GP was prepared to prescribe Naltrexone for you without a specialist advising her that she is more switched on than most. Even after a letter from the specialist a GP at my surgery told me as she explained in great detail all the reasons I should't have Naltrexone that she was concerned that I might sue her. Not helpful when all a person wants is a bit of peace and a better quality of life.
I also find that anything that is there to help us has its base in alcoholism and drug abuse which when you are not any of these things is a bit insulting!
I think I have had a bit of a rant as well, but hope the above is of some use.
AllieCraw I came to the conclusion that we are so unique with our illness and this disease is so rare that not many doctors know how to treat it .Often I was asked at Casualty at Hospital what PBC stands for and was told first time they heard of such a disease. So that is why this Group means so much to me, because I know I am not alone
AllieCraw I forgot to say I am with a Natural Remedy Doctor as well. So I use her medication as well as Ursotan. She really tries to research and has done more than any other doctor has for me. The problem with so many medications are the chemicals and I do not think the poor liver can consume all that as well
I totally understand your frustration. I wish you could change doctors too. You might be right about him not knowing. It's sounds like it's even more important for you to know as much as you can about PBC. I suggest you purchase Dr. David Jones' (on Amazon) the Definitive Guide for the Patient Who Has Primary Biliary Cholangiits. It is wonderful! There are 2 editions. Get both if you can. Please make sure you are on the right Urso dose. 13-15mgs/kg of body weight. Look at the overall trend of your liver numbers. Are they improving overall? That is what is important. Rant here anytime
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