New post about Itch

[KatherineM_PBC]

Hi All. I know there are many historic posts about itch but as new meds and potions come along I wondered if anyone could share their positive experiences of getting their itch under control? (Please don't post negative ones!)

I've had PBC for 10 years and being an Urso responder, have pretty much been in denial as I had no symptoms until the itch started about 6 months ago. I don't feel it's bad enough to warrant another medication, but it's something I dread getting worse, in fact I'm feeling really low today with the thought that I'm going to have to deal with it for the rest of my life.

I have read in Prof Jones new book that there are several medications that can be tried, he also mentioned Vitamin E cream. It strikes me that if the itch comes from inside, then a topical application of anything will be useless, it will just soothe/heal the skin if it's torn by endless scratching. I tell myself to only scratch through clothing for this reason. I wonder if CBD might help, orally and topically? Is it true that the itch comes and goes, or once it starts it never goes away? Some people say it gets worse in the evenings and at night time but they don't feel it so much during the day. Why would that be? When we were teenagers we bought Milk Thistle supplements after a boozy weekend with the thought it would help our poor livers! Would it help at all to take a liver supplement - supplements such as TUDCA Liver Support Supplement claim to clear bile from the body - do I sound silly? I'm probably just grasping at straws

Tips for handling things long term please?

[butterflyEi]

You do not sound silly at all, you have I think been researching your subject and come up with good questions and queries.

A brief background from me. Diagnosed 2006 bumbled along quite happily (in denial also) until 2014 when after a very stressful period the so called itch of PBC switched itself on. The GP tried to help with Cetirizine twice a day but it did not work and eventually in 2017 after trial and error with a couple of different medications prescribed by the hepatologist I have now settled on Rifampicin twice day, sertraline at 25mg (can go up to 50mg if needed) and Gabapentin 300mg twice a day. I am relieved to be, for the main part, itch free and the thought of returning to that deep seated so called itch fills me with dread.

Oddly for some application of cream seems to help, for myself I use a menthol derma cream as necessary which seems to confuse the skin but only for a short while, certainly keeping the skin supple helps to prevent it breaking down under constant scratching. In times of dire need I used to use ice or the brick pillar outside the back door! Not the best idea!

My itch used to plague me from lunchtime onwards but I tried to keep busy falling into bed so tired from a days work (possible fatigue as I look back) and getting a few hours sleep. Also for some the "itch" is intermittent for others so bad that it will take them to transplant, we are all so different that it is hard to predict how it will impact on any one person.

Over the years, for the most part, specialists have not liked the idea of using milk thistle and in general a liver detox is not needed as that is the job of the liver and ours is a disease of the bile duct in the liver.

As to Tauroursodeoxycholate, this is probably a question for your hepatologist or a question to present at the Q&A sessions hosted by the PBC Foundation on Thursday's 1400 hours GMT where specialists from around the world answer member's questions. URSOdeoxycholic Acid is a safe well established bile medication in PBC which works for most, Ocalivia is now available with Bezafibrate showing beneficial use until TUDCA has been further studied and peer reviewed I would not want to try it - personally.

I believe some PBCers from around the world use/have used CBD but it is not something I have tried.

I hope this has been a positive answer. To finish on a higher note I have recently had a telephone consultation with the NHS Hepatologist who was very pleased with my blood test results. I have kept records of these results since 2005 so can see how my numbers have reduced to normal.

best wishes

[KatherineM_PBC in reply to butterflyEi]

Thank you for your detailed reply. I have a phone consultation with my Consultant on 27 Jan, although this was meant to be a yearly review it was cancelled twice so it's been 18 months since my last blood tests. They returned to normal within a short time of starting on URSO which was comforting, but as you say, some people have symptoms even if blood tests are normal. I will put a few questions to my Consultant but don't believe he is an expert in the condition :-(. Best wishes butterfly xx

[butterflyEi in reply to KatherineM_PBC]

I suspect you are a member of the PBC Foundation but if not do join, its free to subscribe and you can then ask a question via email in advance to the PBC Foundation for the PBC specialist on a Thursday. The beauty of the Facebook Live presentations is that if you are not about on the day you can play it later.

[JaneEyre55]

I was prescribed Cholestyramine for my itch, since the liver was not doing its job of cleaning the blood properly. It has worked well for me. Good luck

[Stub007]

My primary care doctor (he is in the same large practice as my gastroenterologist; they coordinate) prescribes Hydroxyzine for that , and I cannot tell that it’s very effective. It does seem to ramp up around bedtime, but I am at the moment not bothered so much after I retire for the evening.Recently my itch seems to be less confined to my back; I sometimes feel it elsewhere on my torso and arms.

I will be 83 later this month and have been diagnosed since my 80th birthday (Happy Birthday!).

All the best,

Don

[Nikkipinch]

Hi, I have had PBC for 10 years too and have pretty much had the itching all the time, sometimes to the point of insanity! Since I started taking Questran sachets my itch is totally under control, they are not particularly nice to drink but I can put up with it to relieve the itching.

Mine got so bad I would literally scratch until I bled, particularly arms and legs.

It is worth a try, to see if they help you.

Good Luck!