Pbc

I'm new here. I was diagnosed with pbc in the past few weeks. I've had itching of my arm for month and unusually tired. I've always been active and now it seems I don't have the energy or drive to bother. I'm currently taking 2000 mg of urso daily and I feel ok. I mean no real side affects as of yet. Except for itching which I'm not sure is the urso or the pbc. Just wondering if anyone has any further information in this disease. My husband seems to think I'm tsking urso now do I will be fine. Should I be worried? I sometimes feel people don't understand and think oh u r on this meds u will be fine. It gets me aggravated and I feel like going in a bubble sometimes. Anyone's thoughts would be appreciated.

Thanks

6 Replies

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  • I have autoimmune hepatitis,I can relate to how you feel,I was very ill last December when I was first diagnosed,I'm doing ok now,still taking steroids and also a chemotherapy drug which the docs say I'll probably stay on forever,people will say to me oh you better now,I just say yeah thanks now cos it takes too long to explain,I joined a Facebook support group which I find very useful,wishing you all the best : ) oh one thing that is annoying anytime you mention liver alot of people assume your a drinker,that needs to change.

  • No one as of yet has said oh a disease from drinking. I tell people I have an autoimmune disease affecting my bile ducts. Just seems more of the right answer. Just leaves a lot of people keeping opinions of what they think to themselves. Hope your doing ok. I know this was a shock to me after I found out. But I also have an aunt with an autoimmune disease which has her bed ridden and if they don't find something for her quick to get her in remission she won't make it :(

    Stay strong!!

    :)

  • My son has PSC, which although not exactly the same, is also believed to be an auto immune condition, with similar traits and symptoms. He was diagnosed about 1.5 years ago and has used diet (gluten free, dairy free, low fat, organic) and supplements (detoxifiers such as NAC, milk thistle, selenium, etc, plus alpha lipoic acid, glutathione, and B, C, D and other vitamins) to slow disease progression, and reduce his high liver enzyme function values. He will probably start low dose naltrexone (LDN) in the near future. He feels good and actually had one stricture in his bile ducts disappear. I would urge you to consider similar regimens, and particularly to focus on treatments that target a range of auto immune diseases. Google Dr. Burton Berkson, Las Cruces New Mexico and read his books on alpha lipoic acid and LDN, and follow the diet, and supplementation and LDN regimen he suggests. Watch his YouTube videos of lectures at NIH, and familiarize yourself with the mechanisms which he believes triggers auto immune conditions, and his approach to reducing or eliminating them. Also consider joining the Yahoo LDN Group; it provides much information not only about LDN, but a range of auto immune diseases. Since mainstream medicine has little to offer about these types of diseases, alternative medical approaches seems to me to have more to offer. Concentrate on diet regimens immediately, since many auto immune conditions are suspected of originating in the gut, and seem to be set off from leaky gut conditions. If you do follow any of these suggestions, please let me know if they work for you, or if you come across any other remedies that you find that offer good chance of success.

    SLCK

  • I'm sorry for your son. I do a lot if reading and try to research as much as I can. My gastroentologist told me not to read into it will make me crazy. But I like to be informed abd incase I get further side effects I will have further understanding. I know a lot of people do trust the alternative way of medicine and I will take that into consideration. Thank you for your information.

    Take care :)

  • Hi Jen11804,

    I have had this since Oct 2013 and just having patchy itching. I find E45 Itch Cream sooths it. I have had exhaustion, brain freeze, depression, lack of concentration and have even lost my job because of this. However, I have had CBT therapy and, finally, am coming back to my old self. I have also been part of a charity called PLUSS, which helps get your confidence back and assists you back into the workforce. I do have days when I have internal shivering which depletes me of all energy and I have to sleep-I cannot get warm. I find that eating something too sugary starts this off. Apparently, I found out on the internet all the possible symptoms of PBC (some that are not in the PBC Foundation website- you should look at this website and the Liver Trust website for info ) and this has been helpful. I have also found hair loss, which is another symptom, apparently. So, apart from scratching, shivering, going bald and sleeping, I am absolutely fine!!!! Yes, I can, mostly, carry on with life as usual and you will come to terms with it. I would suggest you contact PBC Foundation (online address and telephone number there) and they can help you with answers and worries, and put you in touch with a local volunteer if you want to. Share the PBC foundation information with your partner, so that he is aware of what you actually have and hopefully he will be more understanding of it.

  • I was diagnosed with PBC 14 months ago. I take 1500 Urso daily. I had some itching initially, but it's not a problem now. My joints are quite painful , I'm not sure if this is caused by the PBC. The main thing I notice is the tiredness. I walk my dog (slowly) for an hour and that's me finished for the day! Luckily I am retired so I can take a nap in the afternoon.

    The PBC specialist told me I would not die from it, nice of him, so I don't let it worry me. I also tend to tell people I have an autoimmune disease to avoid them jumping to conclusions!

    I hope your itching stops soon, I found a long handled back scratcher invaluable!

    Wishing you all the best.

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