Hi I have not posted for a while but I do read others posts on a daily basis. On Friday I went to a wedding, I had one glass of wine to toast the bride and groom which even with AIH/PBC should not cause a problem however, all weekend I have felt horrible and for the last 2 days am experiencing pain in the upper right and behind my rib cage. I also am lowering the steroids and am on 2 mg per day now. I wonder if I should go to see the doctor about this, I can't even eat, I have had a bad stomach as well and runs. I don't know if it was the glass of wine or it's because I have a flare, I also feel very tired and yes the things I describe are the usual AIh/PBC culprits lol. I just don't understand why now when my bloods have been normal for months...I say normal; when I was down to 4 mg of steroid they were normal, no idea about the last one when I was on 3 mg.

I also had a DEXA scan ( bone scan) and the results have come back with evidence of osteoperesis which is the beginning of osteoporosis due to three years of steroid use....I hope for the sake of my bones I can come off the steroids and hope that this is not a flare because if it is I will have to stay on the steroids.

xx connie

9 Replies

  • Hi connie i hope you are feeling better it could be the wine but i get same symptoms for no apparent reason as i dont have alchol it just comes back to remind us maybe u have been doing too much try to rest i would go to docs and get checked out just to put your mind at rest if i was you i have more pain as the day goes on although my gp always says tell liver specialist but i only see him every 6 mths i have been waiting 3mths to see a rhumatoligist and have an app in october as i have so much unexplained pain in my bones i have pbc osteoporosis and suspected fibromyagia sorry for the spelling but brain fog and memory probs xx

  • I get the brain fog as well and sometimes my speech is slow and slurred and yes tomorrow I will ring my gp and get things checked out, he may suggest a blood test to see if there's anything off with my liver....I never thought a small glass of wine would or could cause so much trouble if that's the case and it was only 4% proof. I literally had three sips to toast the couple.

    I am also worried about my bones...I have an appointment in three months with my liver specialist he is the one who decided it would be a good idea to get a bone scan done..and the results are not so good. I also have sore hips and the left one clunks and grinds. I am not eating very well this week as everything causes severe discomfort but again typical AIH/PBC issues.. that are getting worse since lowering the steroids. I also have hashimotos disease, asthma and many aches and pains in my bones.

    I have a good afternoon tomorrow...I am going to a Rieki share so getting and giving lots of energy healing. Regarding doing too much...I think I might be; I don't have any help at home, I have my husband, my two sons and my sons partner living here...I have a friend who is one for telling me to take things easy and rest up, but also keeps asking me to come visit and even walk all over..yes walking is weight bearing which is needed to strengthen the bones, but I don't get enough help or rest. I volunteer one day a week at a food bank/soup kitchen which I love and there my place is in the office so nothing too strenuous. I swim once a week because I love swimming and the water is very soothing and calming to me.

    I will post what the outcome is of my appointment

    take care xx

  • Hi, I also feel chilly....mild fever.

  • Hi Connie I have the overlap pbc/aih I haven't had a drink yet was worried over tabs . I am on urso tabs no steroids which I am thankful. Had it for 15 years without it being picked up . I am also have lots of pain plus terrible tiredness which makes me feel so down . Well Connie I hope steroids soon finish and you start to feel better soon it's horrible illness tho good we can share with others who understand

    Take care and hope steroids are stopped soon x sheila

  • Hi connie, I also have overlap - coincidentally last night I had one small glass of pink bubbles - I felt awful all night with nasty pain in the liver area and awful headache - still got the headache now. I think when the liver is not used to dealing with alcohol at all, then it struggles when you do maybe? All I know is that I won't be doing it again any time soon!

  • Lo me neither. I expect that the liver not working properly means that it would take time to clear our system of the alcohol. I have been to a Reiki share today and I feel much better.

  • BTW I am currently on 6mg Budesonide steroid which I have been on for approx four years now - my blood results currently are not stable enough to reduce. I wonder if that contributes to the headaches which are so debilitating.

  • Hello conniefused.

    Apparently the odd alcoholic drink if you aren't in a very late stage of PBC should be fine according to what I've read from time to time. I decided back in early 2010 after my first abnormal LFTs that I'd not bother but I was only the odd drinker of a family get-together (I never bothered going out socially at night to pub/clubs). I had a very small tot ot whisky in a cup of tea Dec last year as it felt so cold in my home but I had no adverse effects following. My LFTs are still abnormal but not abnormally so apparently, have been since 2010 but the only symtpon apart from the bloods that I know of is itching in PBC.

    The first thing that came to mind after reading your posting was perhaps due to it being a social event, you'd probably eaten food too that you'd not normally probably consume and along with a small alcoholic drink that you probably no longer bother with, caused you to feel upset within your system. I went away for the week notso long ago and though still in the UK, I always know system-wise due to water changes, different foods and times eating and for me I always seem to start with feelilng constipated for several days.

    In your case it might be wise to be checked out with a doctor and go from there.

  • Hi Connie

    Hope u get well soon ... When I first found my lft were abnormal September 2014 I kept drinking alcohol till I was fully dx this feb 2015.. Between sep till feb I checked my lft every month and surprisingly my results were same every month .. Aih/Pbc r autoimmune diseases so food or drinks should not effect much but we should try to avoid those foods and drinks which gives more stress to liver for digestion . I find out liver takes 1 to 2 weeks to metabolize alcohol So these days I only drink light beer not more than 40 oz in a 2 , 3 weeks gap and I drink lots of water with my drink too ...

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