Crying

[cazwade88]

I have scratched alot in years but now I am brusing its worrying . And I don't know what to do. I cut my nails and I use a brush!!! How ever much I itch it , makes it worse. I used dead sea salt in my bath, soothing mosturises like e45...... please advice would be great .

[evelyn1]

hi i know how you feel,i have suffered with the dreaded itch for way over a yr now,liver specialist tried lots of different lotions,meds,ultra violet light<and left the worst of the treatments till last as seemingly its a severe med to be put on.however after another stint in my local hospital with nurses running with ice packs every hr to me i was at the end of my tether,broke down and asked them to get in contact with my liver team who gave the ok for them to prescribe me rifampacin.I have bn on it now for 3 weeks and what a releif,it has started to come bk on 2 occasions and the dose has bn increased,hopefully it stays away as it is now as they can only increase it once more. I havnt had any side affects which i did have with previous meds they tried me on. please dont suffer in silence and push with your docs to get you onto something that works for you,lots out there to try just takes time in finding the right 1 for you. x

[cazwade88 in reply to evelyn1]

I didnt know it would be that serious? What is rifampacin? Im sceard to go the doctors and them say its nothing when it is. Im not on any medication at all. X

[evelyn1 in reply to cazwade88]

I was diagnosed with pbc 5 yrs ago,put onto urso which slows down the progression. Worked up until a year and a halg ago where my sysmptoms started to get worse. I am 1 of the unfortunate ones with pbc as my condition has rapidly deteriorated resulting in cirrhossis of the liver. I am now currently on the liver transplant list. Dontbe scared or putoff my my story as I say i am just unfortunate &lots of ppl with pbc live life never needing a transplant.

If you dont have anything for the itch go to your gp & he will start you on something to help,dont suffer in silence as the itch can become really intense & it had a real affect on my life style.

You wouldnt be put onto rifampacin at the start,it is a really intense antibiotic used in the treatment of TB but liver specialists can use it as it helps with the itch when it gets to the point where it is unbearable.

Evelyn x

[cazwade88 in reply to evelyn1]

Thank you for ur input. I wish I could do something to help you x

[Hidden in reply to cazwade88]

Hi cazwade88 - when you say "Im not on any medication at all." do just mean you are not on anything for the itch, or actually not on any medication for PBC at all? If the later, I think you should visit your doctor and ask about Urso - most of us diagnosed with PBC are prescribed Urso.

[cazwade88 in reply to Hidden]

I will thank you x

[PBCFoundation PBC Foundation in reply to cazwade88]

Hello cazwade88,

Rifampacin is a drug usually used in connection with TB, but some studies have shown that it can help with the itch in PBC, but as with any drug it can have some side effects, so its important that you discuss this with your GP.

Questran is the licensed drug for the treatment of the itch in PBC. Its "proper" name is Colestyramine. This is a resin which is taken orally and "interferes"with the re-absorption of those chemicals that cause itching.

If you are a member of the PBC Foundation, you can access information regarding this in the Bear Facts, in the August 2010 edition, which is our quarterly magazine. If you are not a member , its free to join and you can use the support of the website, Bear Facts and there is a 24 hour helpline support for our members

Best wishes

PBCMhari

[cazwade88 in reply to PBCFoundation]

Thank you for your comments, yes I will go the doctors as I do feel like crying beacuse of my skin. X

[exy21]

Urso from docs for itch and anti- histamine. Also I wear cotton gloves at night as that's when I seem to really itch and I'm not aware I'm doing it till I see results in morning, no wonder I'm shattered

[cazwade88 in reply to exy21]

Actually thats a great idea I may get some gloves as I know I scratch when I get up in the morning the proof is ther :(. I gues I will have togo ad it is affecting my daily life. Every day I wanna strip and scratch lol.

[Julez1961]

For bruising get them to check your vitamin K levels.

Itching is my never ending nightmare. I can't get too hot or overheat in bed as my skin gets crawling itchy with little electric shocks.

Good luck

[cazwade88 in reply to Julez1961]

Yes its constant itching. ya its now hot and I scratch when im out, I get home and im red.

[FFC1]

I often bruise when the itch is really bad. Tends to be specific spots on body. I use E45 itch relief which works most of the time. I am also aware that for me if is fatty foods that often set off the itch so try to avoid. As I also have Fibromyalgia I often get a bit of pain from scratching too much as well. Good luck finding something that helps, apart from anything it can ver a bit embarassing in public or in my case sitting in a meeting scratching lol

[cazwade88 in reply to FFC1]

Iv been there in public scratching and feeling relieved. Iv used e45 I put layers of it on lol no relief. Xx