Hi All, want to know your thoughts on ..............

[florrie505]

Hi everyone,

I was reading through another members question and I want my fears assured. Does it matter what brand of medication is taken for Pbc. I am on questran, urso, sertraline, naltrexone, rifampicin, calcichew, thyroxine, chloraphenamine as well as eye drops and menthol/epaderm creams. I am sure I have forgotten to add something but can't remember off the top of my head.

Even though I have all these my itch is still unbearable and drives me crazy!

[cavi]

Hi Florri505 I know how you feel my itch is also just a bout got to a stage I don'tknow what to do with myself I take 1,000 mg Urso , Questran Light 4 times every itch cream on the market just gone on statins due to yellow patches on my eyelids they look such a mess and my skin is also a disgrace what I wanted to ask you have you got two kinds of Itching one is like a all over itch and the other one is like bites they itch like mad and then start to bleed have had all the lotions for bug bites but they are still as bad I have had this for a few years so are both itches caused by PBC I just want it to stop and give me a break like you im going crazy some on here say there itch is under control but I think PBC affects us in so many different ways Take Care

[Hidden]

I use calamine lotion for the bug bite type of itch and any cream i can get my hands on for the other itch. I now just take ursofalk 750mg a day, Risedronate sodium for osteoporosis, and Adcal-D3 (Pain killers or valium when I have to but hold out as long as I can before i take any) Other than that I don't like to take things that they try to shove at me that I think are not needed. My itch is worse after a shower it goes berserk.

[mharib]

I use antihistamines for the itch they work great I take one every day and no itching but as soon as I stop the itching is back driving me crazy

[florrie505 in reply to mharib]

Hi, mharib, thank you very much for your reply. I omitted the antihistamines as I didn't think they were making a difference but I might just start back on them. Have a good day!

[Hidden]

Hello florrie505.

Wow, didn't know you could take all those meds as I presume some of them are to try to combat the itch (?) ie naltrexone and Questran.

I developed the itch back in 2010 and that is how I ended up being diagnosed with PBC Dec that year.

My itch did start to subside somewhat after being on urso for nearly a year. Later 2011 and during 2012 I did go through many nights of being itch-free but unfortunately for the past 6mths this yr., I don't seem to have managed more than a couple nights on one occasion. Mine is really confined to night only, starts with feeling prickly when I finally sit down around 9p.m. t unwind before retiring to bed around 11.30p.m. At 11p.m. I certainly know I have the itch and if it is a night where I feel I can't get off to sleep in a short space of time, I end up fidgeting for anything up to 3hrs and then nod off. Normally, like today, wake up feeling as though I've not had any sleep due to getting around 3hrs but I plod on in the hope that the next night I do fall asleep and get a decent night's kip. Come 5a.m. the itch seems to have vanished.

Since being switched to 150mg of urso due to a 300mg recall a couple months ago, I think the replacement urso at present is causing the itch to feel a bit different. Ursodeoxycholic acid altho' for PBC can also cause the side-effect of pruritis which is itching and I cannot help wondering if whilst the urso is aiding in one respect, it is also causing the itch that could have improved by taking it but I'll not know, if that makes sense?

Now I was prescribed antihistamines when I first presented to the GP back in 2010. He gave me a script, I knew you could get Piriton over-the-counter (OTC) so never used it as I was able to pay half the cost as I pay for prescriptions. The Piriton was as the prescription as I asked with regards to mgs., etc. It did nothing for me except make me feel nauseous. I then found out awhile later that the itch in liver conditions isn't often improved with antihistamines due to the fact they are for controlling allergies.

I know there are some antihistamines you can get that make you feel sleep and I have read previously on here that some of you take it just so you can drop off to sleep at night without feeling the itch. I could be very tempted some nights but for me I have to say that if I can do without some additional med I shall do as I am a bit wary about if it would alter the LFTs. I think that is the biggest concern when taking other meds.

[SueLily]

I was diagnosed in 2009. I have what my gastroenterologist refers to as the worst itching she has ever seen. She even sent me to be evaluated for a transplant, even though my liver function is fine. After doing months of research I found about low-histamine diets. If you are not willing to be on a restricted diet, read no further, however, this diet has saved my life.

Here is more information.

ajcn.nutrition.org/content/...

histaminintoleranz.ch/en/hi...

histaminintoleranz.ch/downl...

If you are interested in discussing this further, please leave a reply.