PBC and melasma

[Mayflower53]

Hi, I was diagnosed at the beginning of this year with PBC which was a shock as I had a blood test for a different reason and then following abnormal liver test results I had all sorts of different tests before finally being told It was PBC. I didnt feel unwell but, since starting on the ursofalk tablets I am feeling better in myself. I think this condition progresses so slowly that the physical changes such as tiredness and poor digestion become normalised. It does worry me to hear how some of you are suffering, there is such a wide range of symptoms and not knowing whether or not it will get worse is hard to ignore.

I also have brown pigmentation on my forearms mainly, which I read might be due to PBC. I never thought to show my consultant so I wondered if anyone else has this and whether it is connected. I think it is called melasma? But not sure

[Perkywerky76]

Hi there

I was diagnosed three years ago and I have melasma on my face. I have it above my upper lip and on my cheek and forehead.

I use a really good make up to cover it and also have been using a skin care regime called obagi will clear it up - it's definitely connected to the Pbc

[Hidden]

I have a few on my arms but i thought they were age spots so have never asked about them.

[Hidden]

I have a couple on my face which appeared round about same time as my symptoms. x

[Hidden]

Hello Mayflower53.

Yes it is true that in PBC you can become a bit, well bronzed, especially due to itching in certain places rather frequently. The backs of my calves have taken on this lovely shade!

I started with itching back in early 2010 and that is how I was diagnosed with PBC by Dec 2010. I started on urso Dec 2010 and tho' the itching has improved somewhat I still do have it and it is at night-time, just the time when you are tired after having a 17/18 hour day and want to sleep but then find the itch is keeping you awake most nights for a spell. (Last night was midnight when I went to bed and due to itching (start around 11p.m) I found I couldn't go to sleep. It was not far off 3a.m. when I did drop off and then I woke up again before the alarm at 6a.m. I plod on but some days due to the night-time itching I feel I've not had any sleep at all and feel all washed out from the afternoon.)

I did suffer fatigue in the early days but back then I was working in a demanding full-time job (which my husband decided I should quit so after much deliberation I did just that. Fortunate that he is in work and I do have my own source of income as I was a widow prior to marrying my present husband in 2009 so still receive from my first late husband's employer for life now due to rule changes). Fatigue long since left me, it is a different feeling later in the day being tired.

I know in the summer months if you are out and about and catch the sun as I did during the summer that has now just passed, my arms in particular being more exposed, they are still pretty much tanned due to having PBC. Something to do with pigmentation in the skin and how it is broken down, different when you have PBC. But I really do not care to be honest. As long as I am doing well then that will do for me. My LFTs have been slowly dropping over the last almost 3yrs now and I know for a fact that I am feeling great.

I will be 50 next year by the way but I also think that as we age anyway we get certain liver spots, moles, etc that just appear (I have a lot of retired lady friends due to certain areas of working over the years). Unfortunately for me I've never been able to wear make-up, never liked the feel of lipstick when I tried that as a young girl and I did have eczema when I was a tot of which I had a short bout when I was 16, had a patch on my eyelids for awhile. That just vanished but I avoided using make-up so never have. I did try various moisturising creams/lotions on my face after I was 30 but have to say that within a couple hours all I had was a few bright red blotches that were telling me I was allergic to some of the ingredients. I have managed to find just 2 moisturizers that are no problem and either do not break the bank.

I switched off long since from thinking how this could become eventually. My way of thinking is that if I was to sit about and worry about it then in-between I'd not try to get on with life and live it. I'd rather have something to smile about in time if the worst does become.

I find that it is the medical profession who cause more stress than anything else to me. Back in May I thought I had cracked it finally..... had managed to sort out getting print-outs of the bloods each time, had changed GP surgery and was called in as a new patient and the female GP said she was going to do it like this - as been having bloods every 3mths due to a slight incline previous yr given there was a pretty good picture of them over the 2 and half yrs., I'd now have the at 6 monthly intervals. That then meant I'd go to surgery to see a GP every 6mths when blood results in and 4 times a yr pick up the urso.

Since a recent recall of the 300mg urso and now having to take 150mg another GP in surgery who was doing the prescription early Sept decided I could no longer have 90 days of urso, said I had to have a month (which I found out in their surgery is in 28 day cycles for prescriptions). I managed to get him to do 3 months which is only 84 days and now have to wait until I return to surgery for bloods Dec to find out if I can have more than 28 days. Another bit of hassle. I'd hate if I took more than the one drug.