Question ?

[Alley27]

Hi I wonder if any one else has developed a low mood and lack of self confidence since being diagnosed? I look at myself and see many changes since diagnosis, my hair is dry and falls out, my muscles seem to be much weaker than before, I have also lost muscle mass as well. I am looking tired an much older than I used to, my skin is very dry.....am I imagining it or is it as i suspect the medications I have to take. I am on prednisolone, mercaptopurine (cytotoxic cancer drug inplace of aza) urso, omeprazole and sometimes Questran, if I have issues with over production of bile. I am also concerned that the HRT I use might be causing problems for my liver. Two weeks ago, I had a mini lung collapse..the bottom right...it corrected itself within 30 mins but it was so painful. On examination my liver felt really big...I actually felt my liver myself as they examined me which was unusual. My LFT's are normal according to my gp so I don't understand why this happened. I have been told there is the possibility it could happen again.....is it written anywhere that autoimmune illnesses can cause lung collapse.......any information would be welcome Thank you xx

[Eredenta]

Dear Connie,

One of the best things to do is to be optimistic. If you do the opposite the results may be what you experience now. In general mental state of mind is so important, that can influence your general health.

My personal advice is to try to think positive and see the good part. The hair shows usually how you feel, not your health. For me is like this, is my 'psychological' mirror.

Take care. And smile.

[Jojowen]

Hi Connie, being sick is awful! It changes you - and not in a positive way. I am struggling with 3 symptoms that come and go. Sometimes I am ok and then the next day I feel terrible. I find it hard to be positive, but I do want to live and I don't want to feel bad even when I am a little bit better. So when I feel really bad I try to do all I ccan but I need to be kind to myself and be happy if there is one little thing that I ccan enjoy. Better days I remind myself that I feel better and just try to enjoy the things I can do. I am absolutely ruthless in terms of who or what I might fail or let down. I didn't ask for this and I don't want it but if I am late all the time or way behind with things other people don't get to complain. I am struggling, doing my best, they get to live with this new version of me. I hate it when I have no energy, but I try to accept it and do very little and when I have a little more energy I try to spend it on the right things. It is hard! I have aged too and I hate feeling so weak and I would like just a day without all the pain. But it is what it is... Let your doctors know how you feel and be a nuisance until they try to help you out a little bit more.

I started taking Q10 and feel a little more energetic, don't know for sure if it works. Might be worth a try if you are tired all the time.

Hold out for the good times!

J

[Hidden in reply to Jojowen]

Well said Jojowen.

I think you have to crack on with life as best as you can as quite frankly there is not a lot any of us can do to alter the fact we are stuck with PBC until someone finds out how to cure it permanently.

I often think of others at certain times and know it could be worse for myself but I am still walking and talking and feel I am doing quite well despite having the itch of PBC which is a damn nuisance at night. I find it is the itch that impedes on my life really, if I didn't itch I'd not even know I had PBC. But I've been itching now for 5yrs and take the good with the bad and get on with life.

I never took life for granted pre-PBC as I was a young widowed mother of two so I know how precious life is. I've had the ups and downs in life over the years and had to accept that just as I had got my life back together completely (remarried in 2009, children grown up and the nest about to be fully emptied), it all came away at the seams in 2010 when I started to itch.

The one thing I have now is feelings of guilt. I was in the same position years ago with my former late husband that my current husband is now in, living with someone who has some condition and never really knowing what's ahead. But we both agreed long ago that we would switch off. I decided myself that I'd not think about how this PBC could become but would deal with things as and when as those things that 'could become' might never be so so it would be needless worrying.

[nancystreit in reply to Hidden]

Do you take hydroxyzine for the itching? It is the best anti-itch medicine.

[Hidden in reply to nancystreit]

Hello nancystreit.

No I've not as yet taken any medications to see if it will resolve the itching. I just don't want to add any medications unless I feel it is absolutely necessary.

Normally the first line here in the UK tends to be Questran (or colestryamine as it is known) but it seems that in a lot of patients with PBC from what I have read on here and in other literature on PBC it doesn't work. Thus you then get stepped up to something else. One of the meds is an anti-depressant I think or maybe anti-anxiety, supposed to work by blocking out the feelings of itching.

I did look up your hydroxyzine and noted it is an anti-histamine. I know in early 2010 the GP first thought I was experiencing an allergic reaction to something with the itching as that is the first thought so I was advised to try Piriton. I bought some over-the-counter which was the same as the GP would have written on a prescription but all it did was make me feel sick constantly so 2 days of that I quit taking it and in that time I was still itching like mad. Then of course it was found the LFTs were abnormal so that started a different way of thinking.

Since taking urso from Dec 2010 the itch has altered somewhat. I tend to itch at night and if I am lucky and tired then I can sleep through it but if not able to sleep I can feel it. It tends to have resolved by around 5a.m. but I have come to realise long since that if I eat later at night I itch for slightly longer of a morning so for me cut off from eating is when the evening meal has done at a reasonable time as possible.

I am doing quite well on urso and I don't want to put some other medication into the mix and possibly have the LFTs alter as they can by taking certain medications.

I think it is how one feels. There's no right or wrong way by deciding to take a medication that might take away the itch but I do think you have to reach a certain point yourself to want to give something a go. At present I am not of that way of thinking to request something.

[exy21]

Hi I have pbc/ auto immune hep/ sjogrens and crest syndrome. I find the medication has caused problems with my skin like you. Doc says that's what happens?! Not a lot you can do. If skin is really bad ask to see a dermatologist. In regards to hair try supplements or eat oily fish or nuts. I take vit e(hair, nails and immune system) and milk thistle for liver. Like others the trick is to be as positive on the better days and not to feel bad on the not so good days. My glass is now half full never half empty. I'm still here after all.

[Hidden]

Hello conniefused.

Sorry to read about what you say is your current state with PBC.

Maybe the lung collapse isn't actually connected to PBC. Not sure about anything auto-immune regarding the lungs but there are a few conditions that are now grouped together and classed as COPD. Pneumonia can cause a lung collapse.

Are any of the medications you on prone to some side-effect that can cause a problem in the lungs at all? I know steroids as in the case of prednisolone that you mentioned tend tohave impact on the system hence the weaning off of them.

I didn't understand your mention of 'over production of bile' as I thought that in PBC with a compromised bile flow due to the bile ducts that are under attack the urso we take improves the bile flow.

Might be wise to jot some questions down and put them to your doctor. It does sound though that if your LFTs are normal your PBC isn't as crucial at the moment but then again it depends on what the 'normal' term your doctor has referred. My LFTs are classed as 'normal for PBC' but they are abnormal (I get the print-outs each time) but I'd not say they are overly-abnormal.

I think that anything we have that is classed as long-term and has to be dealt with seemingly constantly (every time I reach for the urso is one) can get one down at the best of times. I know myself there are some things I'll probably never do again, mainly leisurely things (I wouldn't be able to sit through a movie at cinema, especially at night anymore due to the prickles starting or itching as I am a night-time itcher) but they do all make you feel down at times.

I notice my skin feels drier than it ever did in certain parts of my body, my legs below my knees for eg. That is due to itching as that is where I am prone to be itchy at night. I don't wear any clothes these days that show off my legs below my knees in the summer months either due to the marks on my legs due to scratching. Nothing really alarming there but it does make one feel all the more self-conscious.

Protein is good for trying to keep muscle mass. I have been expecting changes within myself due to being 51 in a few weeks time. I was 46 when I was diagnosed with PBC but was only 45 when I started itching earlier in 2010. I have noticed how I am beginning to look a lot skinnier now in certain places (my wrists and knees for eg) but I put it down to being in the throes of menopause and the fact I am now in my early 50s.

My hair is pretty much the same as it has always been. I've never had a thick head of hair and it looks the same as it always did except there is grey in abundance. I don't wash my hair like I used to do as I think as we get older we don't need to do so and in the couple days that I don't my hair has time to replenish its natural oils.

I think the only way to keep muscle tone is to keep on trucking as much as possible. I do a lot of walking. Been lax through the UK winter but now the light nights are here and getting longer I am hoping to get back out and have an early evening stroll like I do tend to do in the warmer months.

[nancystreit]

I think that being sick is not just physically exhausting but emotionally exhausting as well. We are not what we once were. Sometimes I stop and wonder if this is really me. That change in how we see ourselves and the constant struggle is difficult and certainly can affect our moods. No one can really walk in our steps or really understand what we experience. Being a religious person, I try to see Jesus walking with me in this and that helps.

[Hidden in reply to nancystreit]

Hello nancystreit.

I agree there that no-one can know how we are now with this PBC except for someone else who has it. We can relate to certain things that come with it, the itch being one, for others the fatigue floors them. (I am fortunate in a way that I only had fatigue for about a year, it vanished the following year after diagnosis. I have often thought which is worse, the itch or fatigue but then thought I am glad that currently I do not have to endure the both.)

For me it did take some time to actually accept that the woman I used to be pre-2010 isn't the same one that is here now due to the PBC.

I do find I don't do certain things that I used to do once of a day but I have decided long since to just crack on with life and enjoy as best as I can as after all I could be worse and in all honesty I was unsure how I'd be 5yrs down the line from diagnosis and later this year I will have been diagnosed for 5yrs.

[nancystreit in reply to Hidden]

Have you tried hydroxyzine for the itch? It is a prescription and is better than other things for itching. It helped me a lot. Now, fortunately, I do not have that. Good luck to you.