UV light therapy

[Char_char1980]

Hi

Just read about UV light therapy possibly helping the itch associated with pbc just curious as to whether anybody has tried this and to what result.. I am currently unresponsive to urso and find my itch is getting progressively worse but is always worse in the winter x

Thanks in advance

Charlene

[Hidden]

Hi,

I had it about 3 years ago, unfortunately it didn't help me but everybody is different and i have heard that others benefited.

Best of luck. X

[Char_char1980 in reply to Hidden]

Thank you for your response I'm thinking it's worth a try I have nothing to lose I guess. Out of curiosity have you found anything since that relieves the itch?

[Hidden in reply to Char_char1980]

I agree that its worth a try.

Rifampicin is the thing that helps me, been on it for 3 years now and still works. I do have times when i have to double up dosage(as adviced by consultant)but drop back down when under control again. The doctor tried so many different things to give me relief .

Take care and wishing you well in the New Year xx

[Char_char1980 in reply to Hidden]

Thank you I haven't tried rifampicin since I was pregnant, it didn't really help me then but might be worth another go thank you for your advice and wishing you well and a happy new year too x

[SLWB]

I do it three times a week. Yes it helps a bit and I’ll take anything. I was taking rifampicin and it worked great but it made me jaundice. Went off it for three months to make sure that was what made me jaundice and it happened again. It’s not supposed to do that so not sure why it did. But the UVLT won’t harm me at all so I do it.

[Char_char1980 in reply to SLWB]

Thank you for your reply its helpful to know .I got given rifampacin when i was pregnant with my youngest as my itching was so intense but it didnt help me at all.. from what I've been reading about UVLT it seems that its technically like having a sunbed is this correct? and if so would it be worth taking that route or better to wait for a referral..I'm due to see my consultant on the 9th January anyway ...sorry for all the questions but its something that's never been mentioned to me before xx

[Pamela4475]

I don’t see how it could hurt but definitely check with your md. I finally found a lotion that helps.... Nevia intense healing 72 hour

[Char_char1980 in reply to Pamela4475]

Thank you will give it a try x

[genj65]

Char_char1980 I suffer from the dreadful itch and NOTHING works for me. My last try was plamerhisis it did nothing so I've been told by my University of Michigan dr to consider liver transplant. I'm willing to try the lighting but being of black decent I dont do tanning

Goodluck I feel for anyone with the itching let alone having PBC 😏

[Char_char1980 in reply to genj65]

Thank you.. good luck to you too especially with the liver transplant hope all goes well and a donor is found soon xx

[Jeanb47]

I have a up lamp to help with depressed mood in our shorten days of winter. Unsure if it would help itch. My itch has started to effect my ears. My throat and ear itching is driving me crazy. Can’t scratch ears or throat easily. Worse is at night.

Doctor has checked my ears three times and says they look fine, not explanation for them itching.

Anyone else have a similar symptom?

[gwillistexas in reply to Jeanb47]

Hi Jean! Good to see you post. Been a while. Hope all is well😊

[Char_char1980 in reply to Jeanb47]

Yeah itchy ears well itchy everywhere to be honest lol

[Jeanb47]

That should have been UV lamp