Newly diagnosed

Hi everyone. Only just diagnosed November 2016 aged 30 and found it very scary at the beginning. Now trying not to focus on worrying about it and taking each day as it comes as there isn't anything I can do to stop it progressing. Have 2 young children (aged 8 months and 2 yrs old) so hard to tell if my fatigue is from running around after them or the dies ease. Itching isn't too bad at the minute and comes and goes.

Starting taking Urso and going next month th (February) to find out if my body is responding to the medication. Fingers crossed! It's great to read about other people's experiences as well as daunting! Going to attend one of the talks in my local area next month to see if I can become more informed about the disease - not sure if that's a good thing, sometimes after reading certain information on PBC I think ignorance is bliss!

Xx

29 Replies

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  • Have you joined the PBC Foundation? The information in the compendium is very useful. It is up to date and not too scary.

    Take heart. PBC for the vast majority of people is slow progressing.

    Yes i agree sometimes ignorance is bliss but knowledge is also power. Power to help yourself. If you get information from the right sources (not google, which can be old, inaccurate and misleading) you can learn to live as normal a life as possible.

    It is tiring looking after young ones but remember to take care of yourself also.

    Best wishes

  • Thanks very much Lindyrich you're right knowledge is power and I really appreciate you taking the time to respond to my post. I am trying to focus on the positives as opposed to the negatives xx

  • Hi Sharilee59

    Welcome to the group.

    Hope you get lots out of the talk. I have heard they are very good. I have not managed to go to one yet. Let us know how you get on after your next appointment. Hope your numbers go in the right direction.

    best wishes

  • Thanks butterflyei I'm looking forward to the talk as I don't know too much about living with PBC to date but this forum and the PBC foundation is very good. Getting my bloods done next month again so fingers crossed my body's responding to the medication x

  • I have had pic for 16 years only get a dry mouth now and again I chew gum if this happens.are you having blood test and a scan every 6 months.

  • Hi Susan thanks for your message, is this the only symptom you have experienced in all the time of having PBC - did you change your lifestyle at all once diagnosed? As I've only just been diagnosed I'm due my first checkup next month to find out if my body's responding to the Urso and if it is then they hope to schedule 6 monthly checkups x

  • I live a normal life I even have a drink I am signing up for genetics they want to see me to find out why urso agrees with me and not every one. Try not to worry I now have a yearly fibre scan instead of ultra sound My hospital is addenbrooks in Cambridge I hope this helps you .

  • My son, now 27 has had ulcerative colitis for 15 years, and primary sclerosing colangitis (PSC) for 4 years. Both are auto immune conditions, and PSC is quite similar to pbc. He has been successful,for 2 years, in halting his PSC and returning to normal liver function and inflammation values in his blood tests, by following a strategy of diet, vitamins/supplements, and low dose naltrexone (LDN). With most autoimmune conditions originating in the gut, as a result of leaky gut syndrome, healing the gut by eliminating gluten, dairy, and other items such as gmo foods, is the first step toward improvement. Reregulating the body's immune system can then be achieved through vitamin and supplements, but most importantly LDN. Join the Yahoo LDN user group, read Dudley Delaney's web site, and read Elaine Moore's book on LDN, and you will begin to understand how this low cost and low risk drug has been used by tens of thousands of people to control auto immune conditions. Google Dr Burton Berkson, read his books on alpha lipoic acid and B vitamins and listen to YouTube videos of him, and you will better understand how diet and vitamins/supplements fit into the strategy for auto immune control. It takes a bit of effort to do this research, but it is extremely important and worthwhile, and I believe provides a low risk, high success route toward control of your auto immune condition. If you need more direction, contact me and I will try to point you toward other resources that might help.

    Warren

  • Warren this is very helpful thank you so much! I'm so overwhelmed with the response I've gotten in my post only having posted last night - was unsure if I would benefit from this forum but it is proving great for speaking with other people who understand what I'm going through as opposed to speaking with my family who are more worried about this than I am. I will definitely look into all that you have suggested i am taking some vitamins at the minute but nothing too special just vitamin c tablets. Xx

  • Hi Sharilee. At the top right of the page look at the link that says 'related posts' and you will see other new members who, similar to you, logged on here feeling quite anxious after their diagnosis......me too! Let's hope your diagnosis has caught the problem early and you respond well to URSO, my liver function tests returned to normal, and remained that way for 3 years with no symptoms. Recently had a little blip but my Consultant says he's not alarmed, as you may be reading, ours is a slow progressing problem. I have decided to see a Nutritionist who is helping me with diet - cutting back on 'inflammatory' foods (those containing gluten and dairy for example) and though I used to enjoy wine most days now only allow myself a couple of glasses at the weekend. Definitely don't trust Dr Google for anything PBC related - you can now ask your new friends :-) x

  • Aw thanks for the tip. That's brilliant 3

    Years with no symptoms - and when you say you had a little blip - can you tell if it starts to get worse yourself?

    Yes I think the overall consensus seems to be diet controlled as first point of call - I'll need to clean up my diet 😕 Xx

  • I see my Consultant annually in Nov. Last year, when I visited him my Liver Function Tests were slightly elevated and when I mentioned I had pain in my stomach and around the area of gallbladder/liver he suggested ultrasound and endoscopy. Neither found anything dodgy, in fact the stenographer told me there was no scaring of my bile ducts. It's left me wondering what is causing the stomach discomfort and that's why I have booked myself to see a Nutritionist who will look at my diet to see if that is the cause? I have no itching or fatigue, I go to the gym twice a week and run my own business which means long hectic days. As a busy mum you will probably be wiped out looking after your kids, if the older 1 still takes a nap during the day, try and nap too instead of tidying up the house! Get as much help as you can from your partner and family and hopefully you can have some relaxing time for yourself, a hot bath in Epsom salts would be good. A Nutritionist will be able to help you with diet and suggest supplements to boost your immune system - I would think your GP could give you and NHS referral for that? Good luck. xx

  • Goodness you sound all go - I've started yoga but need to get myself into the gym or get into a bit more exercise. Nutritionist seems like a good idea too x

  • When you Google Dr Burton Berkson, and read his book on alpha lipoid acid, you will find his regimen for re regulating your immune system and the regimen of vitamins and supplements you should be taking. Berkson is also a proponent of using LDN. Do not be surprised if your doctors either do not know about LDN, or are reluctant to prescribe it, because as a prescription, it is "off label". Read the sources I previously suggested, and you will likely come to the conclusion that it is worth trying, even if you have to find other doctors or sources to obtain it.

  • I've just had a quick Google of this book. There are several references to this Doc that claim he has cured patients with liver cirrhosis. Although we don't have quite the same condition, is it suggested that patients with PBC might benefit from the same supplements? Do you take his "triple therapy"?

  • Dr Berkson recommends a regimen of diet, vitamins/supplements, and LDN for a wide range of autoimmune conditions. It is my understanding that pbc is often considered an auto immune condition, when the root cause is not cirrosis due to excesss alcohol consumption. If this is correct, then Dr Berkson's regimen would seem to be appropriate for pbc patients.

    Yes, my son who has PSC and ulcerative colitis, both believed to be autoimmune conditions, basically follows the specifics of Dr Berkson's regimens.

    I do not believe Dr Berkson claims to cure the underlying condition, because he cites many cases where patients see improvements, or even elimination of symptoms, but who then stop the regimens, only to have the autoimmune reaction start all over again. Therefore you should assume that adherence to these regimens, will likely be a lifelong practice.

    Warren

  • This does sound really interesting and definitely worth looking into the worst that could happen is that it doesn't make any difference and you revert back to your old ways.

  • Hi Sharilee59,

    I just want to say welcome to this forum. I'm sure many of us recognise the scary feelings of being diagnosed and I hope you have people around you who can really listen to your concerns. I'm really moved that you have this diagnosis at such a young age and with a young family too. I have seen posts from others in similar situations so you're not on your own but I guess it may feel like that. I'm not surprised you don't know if your fatigue is disease or children related, it could be either or both! I know it probably won't be easy to rest and find time for you within your busy children focussed days but pacing things and nourishing yourself is, in the long run, one way of caring for them too. I think we all need to find what resources us in order to manage living with this disease.

    It sounds great that you are going to a local PBC talk so close to your diagnosis. I presume it's run by the PBC Foundation and if so they are really good, so informative, interesting and reassuring...for me anyway. I've been to many, many talks and workshops in my time and the one run by Robert was one of the best. It was really interactive, tailored to the people who were there not just reading from a script, and what Robert doesn't know about PBC probably isn't worth knowing.

    Good luck with your consultation next month and I hope your results are moving in the right direction. I wish you all the best, Cx

  • Thanks very much for your post. Very daunting but focus on the positives and have 2 fabulous little kids to keep me busy and a supportive family so count myself very thankful. Yes it's a PBC foundation talk and looking forward to it just to find out a bit more about PBC as at the minute it's all quite vague x

  • Hi Sharilee. As others have said you should join the PBC Foundation - at least that way you get accurate information and some real support. I was only diagnosed last year and have been on Urso for just over 6 months. It seems to have done the trick with all my LFTs now in the normal range. To be fair they weren't that far off - other than GGT, but either way I'm happy to be one of the lucky ones who respond to it and hopefully you are too. I know when I was first told I might have PBC I did the usual google thing - good in that I found this forum and the Foundation - bad in that it scared the hell out of me! Luckily all the people on this form and the information from the Foundation put me on the right track and let me put it all into perspective so you're definitely in the right place. Even if you don't post much you learn from other postings and responses so there's an absolute wealth of knowledge and experience at your fingertips. Going to local talks is a great idea. I don't but only because I travel a lot so can't make any of the various PBC support group meetings but they sound like a great bunch of people and really caring - go for it. Best of luck with the Urso! Adele x

  • Hi Adele thanks so much for posting - sounds like your in a similar situation I just hope I'm as lucky as you to respond to the medication well. Do you experience many symptoms? I have to say at the minute I'm not getting any bad side affects from the Urso so long may that continue - just trying to remember to drink it every morning as it's hard to train yourself that this is you for life ...xx

  • Hi Sharilee. The only real symptom I have is fatigue which had I still been working I would have put it down to the long hours coupled with a tough enough exercise regime. I have an underactive thyroid too and my iron levels are always borderline so I figured it could be either of those. I was so lucky with my GP that he ran a whole host of tests and voila ...PBC ! I haven't had too much problem with the Urso - mild abdominal discomfort that comes and goes but otherwise ok so I think I'm one of the lucky ones. I bought myself a little pill box and got into the habit of setting it up each night with the next days pills so it becomes straightforward - especially now as I just take them all (just 2 pills) before bed - I stick my thyroid tablet in there too so it's just part of my morning and evening routine now. If that's the worst that I have to contend with then definitely happy days! Good luck with your regime. Adele xx

  • In a similar position. Diagnosed last may aged 30 now 31 and have a. One year old. Was shattered but felt was more than having a baby!

    If you ever need to chat just message me. It's hard sometimes but lots of support here

  • Hi Chazzy thanks for the response - this forum is great chatting to people in similar situs. Can I ask over the first year of being diagnosed have you noticed much difference? Did your body respond to the medication? And are you now just in a 6monthy checkup system x

  • Yearly check ups ad my LFTs all back in normal range from urso. Took me a while to get used to it but so glad I stuck with it. Where abouts are you in the U.K.?

  • That's brill! So happy for you... I'm

    Sure your one year old keeps you super busy! Our two are crazy but makes you put things in perspective and if you can cope with life with a few symptoms here and there and lifetime medication to be there for them is worth it. Do you have many symptoms from PBC? I'm in Northern Ireland. Struggling with the lack of social drinking but in the grande scheme of things no big deal haha x

  • Totally agree makes me think got to make most of the time and I try not to think badly anymore (hard tho sometimes)

    Have you given up alcohol totally now?

    Just the tiredness and it comes and goes sometimes terrible other times fine!

  • Haven't completely given up having alcohol as the specialist said this wasn't caused my alcohol don't be excessive but does no harm but most of what I read people seem to have given it up so am reluctant every time I do have a few.

    Well I'll keep you posted once I get my results next month - fingers crossed! Xx

  • Yeah do. I haven't given up totally my specialist said fine occasionally and in moderation but I do stress out now and don't enjoy it so much so barely ever have a drink. Let me know how you get on. I'm on fb if you ever want to chat xx

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