pbc

[ali-d]

I seemingly have PBC which I never heard of, I have been suffering for years with itching, rashes etc, nine years ago after two years of pure torture, of having a rash all over my body, couldn't sleep etc was given numerous creams etc as the dermatitis consultant did a patch tests which showed I am allergic to dyes, chemicals in soaps, soap powder etc, nothing seemed to work and I eventually ended up in hospital after seeing another consultant who treated from head to foot with creams etc , as my immune system got so low I even ended up with shingles which was found out when a staff noticed one of the rashes I had was different, eventually I have been able to manage the eczema, but two years ago I was feeling really unwell, the itch was always there, but this time I was having muscle stiffness and extreme fatigue, felt really unwell, bloods were taken, I was referred at first to the rheumatology consultant, but I was also at the same time seen by the gastro consultant as something had showed up in my liver result, now I was asked about my lifestyle etc and informed I would have a scan to check my liver for scarring, now it was never fully explained to what they were checking for and why, so again this year I was sent another appointment with the gastro consultant (a different one) who examined me and told me I wouldn't need medication as I was one of the more healthier people with this disease ( what disease) , I spoke to my GP who told me I had PBC, never heard of it, I researched it and found all sorts of information, glad to see this website where I have been able to get a bit of understanding of what I have and to read other peoples stories. I still get really tired, stiffness, headache, generally very unwell, hard at times to maintain my work ethic, under my eyes, there a dark shadows which was one of the first things I noticed about myself and how tired I really looked, as I work 12 hour shifts on a 4 on 4 off basis with nightshift work thrown in I am finding my job harder and harder to do, feel very alone with how I am feeling, worried that I am not going to be able to do this for much longer but have no choice, like most folk I need to work as there isn't a lot of work out there especially where I live, my GP is supportive but I feel she really doesn't know an awful lot about it, she said I am at the systemic stage, generally unwell symptoms, rashes, etc, I am quite a optimistic person but this has really given me a fright, as I have been told I m ok, but I don't feel ok and at times put a face on, but I ache really bad, the skin rashes especially on my legs and feet break out, the ones on my toes swell and weep, I have been dealing with this for so long, keep thinking what is coming next!

[PBCRobert Partner]

Hi, Ali-D.

Firstly, I would say that it is a good thing that you have now been diagnosed because now we can start to address where you are, how you feel and find ways forward.

Secondly, I would invite you to contact us directly at the PBC Foundation where we can discuss where you are in more detail. feel free to PM me here or contact the office.

No matter where in the world you are, we are happy to call you and talk.

Yours,

Robert.

[ali-d in reply to PBCRobert]

Thanks Robert, all I have been told mostly was from doctor who explained what it was, I feel I need to discuss more with the gastro consultant as I have read that a GP cannot prescribe the medication, quite glad really that I was told I do not need to at this time, I ve been for two liver scans, yet to receive any letters of an update on how they were, my GP told me that if anything showed up she would contact me, so I am under the impression everything is ok, I don't go back to consultant till next April. I just feel so tired, fed up with the rashes that break out, sometimes I feel so unwell with headaches and stiffness after a days work, just generally ill that I don't have the energy at times for much, as my job is quite demanding and work horrible shifts which I know doesn't help, its easy for someone to say I should consider looking for alternate work, but where I live there isn't a lot of decent work around, the good thing is I only need to drive 10 minutes and I m at work, if I had to look elsewhere it would mean longer travelling and less money, so for now I just need to keep going.

I appreciate you contacting me, feel good that whatever is going to come in the future there is somewhere I can turn, but at this time I really feel alone, as I was told its rare disease which I know very little about.

[PBCRobert Partner in reply to ali-d]

And there lies my point.

As an organisation (and I imagine this would be borne out by our members), we can probably give you more information than most gastros and/or GPs.

Also, don't wait until it gets any worse. Talk to us now. Take control now. You are absolutely NOT alone.

[Hidden]

Hi Ali-d I don't comment very often but I do read the posts most days. Then every so often a post will come up and remind me how I felt 5 years ago when I was dx. I thought my life was over at the time, but here I am five years later still doing everything I enjoy including working full time.

My consultant at the time gave me the dx of PBC, he never explained anything about it but thrust a piece of paper in my hand with a web page on it and said contact them.

I was shocked at the time and wondered if the Internet had replaced the bed side manner so to speak, but I can say its the best thing he ever did.

That web page was for the PBC Foundation, if that sounds like an advert in a way it is, it's where you can get information that is current and support for how your feeling, if you have not done so contact Robert and have a chat you won't regret it. Take care.

[teddybear7]

I too was not told what it was they were looking for. It was the radiologist doing my scan than mentioned PBC. I looked it up and found the PBC foundation. On checking the symptoms list I ticked lots of boxes and everything fell in to place. I then went to gp and showed my annoyance as he hadn't told me what he was looking for and if he had it would have made life easier. So who knows how long it would have gone on for without the foundations info. I've found it a wonderful help. X

[sap7649]

Hello,

Just wanted to put this out there I read about a home remedy a friend told me to look into too! She said apple cider vinegar would calm itching I was eerie at first surely not. She said go to the market and buy some half a tablespoon dilute in water that it brings your Ph levels to normal. My scalp used to really itch I thought it was the shampoo sp I went thru many kinds. I used this ACV into my hair after shampooing left it for about 10 minutes and my scalp has had a lot of relief. Also, she even drinks it diluted in water just 1 teaspoon and said it relieves , it's good for digestion. I've used externally but not internally I don't want anymore problems then what I have now. Pbc/ Autoimmune hepatitis.

Can anyone share any tips also I've given up on sugar which as helped my itch.

Thanks!

Be helpful to hear some reply on this one.

Sap