Itch / bile acids / diet

[KatherineM_PBC]

For the last few weeks I have been suffering a prickly itch over all of my body. I have huge sympathy with those who have lived with this for years :-(. I have written down the names of 6 different medications mentioned in the forums, such as Cholestyramine (Questran) - it's my understanding they bind the bile acid/salts that are under our skin and make us itch.

When I Googled reducing bile acids on, Cholestyramine was mentioned for treatment, then there was info about adopting a low fat diet. Has anyone been recommended to do this by their Consultant? I'm no Doctor but I would think a topical application on the skin is less likely to help an itch when it comes from the inside, but a diet might help?

Copied from Internet -

To reduce your fat intake, try to avoid eating:

butter and margarine

mayonnaise

fried or breaded foods

baked goods, such as croissants, cookies, and pastries

lunch meats, hot dogs, sausage, bacon, or other processed meats

full-fat dairy products, such as whipping cream or sour cream

Keep in mind that your body still needs some fat to function properly. Try swapping some of the foods above for these healthier fats, such as:

avocados

fatty fish, such as salmon and sardines

nuts, including cashews and almonds

[butterflyEi]

Hello from a fellow itcher.

I have used colestyramine (Questran) for quite a while now, I take one sachet before breakfast and one sachet after. I have a relatively low fat diet anyway but I wonder if the low fat diet is directed at those who are prescribed this medication to help lower their colesterol. Yes indeed we do need some fat which helps the fat soluble vitamins A D E & K.

Recently I was having some bowel trouble and had investigations all proving negative and shortly after colestyramine became unavailable in the UK so I was prescribed Cholestagel as an alternative. My bowel problem went away. I am now caught in another country due to being on holiday when COVID19 arrived and lockdown was instigated. In this country I cannot get cholestagel and have had to go back to colestyramine and low my bowel problem as returned.

Whilst listening to Prof. Neuburger on the PBC Foundation face book live presentation yesterday afternoon I learned that colestyramine can be taken 2 sachets around breakfast, one at lunch and one with dinner once the itch is under control sachets can be reduced until you get the right balance. Please bear in mind that any bile sequestrant such as Questran has a time restriction of 4-6 hours when other medication should not be taken as it will reduce the effectiveness of other medicines.

Unfortunately colestyramine/cholestagel did not erradicate the itch for me, I am also medicated with Rifampicin as Naltrexone turned me into a mad woman, and that is topped off with 25mg Sertraline which can be increased to 50mg if needed. For the most part I am itch free but it is always just lurking under the surface mostly around the jaw line.

Temporarily you may find an antihistamine such as Cetirizine will help until you can get a prescription, this was my initial medication from the doctor of 2 tablets twice a day.

Some people do find that cream straight from the fridge helps, icing the area often gives me relief when I am having a flare and bi caronate of soda in a bath before bed is also suggested but never worked for me.

Not sure I am going to spell this right, but plasmapherisis is a last resort before liver transplant for the so called itch of PBC.

Sorry for the long answer, but if I can help further please get back to me. I have had the itch since 2014 but diagnosed 2006.

[KatherineM_PBC in reply to butterflyEi]

Thank-you for taking the time to write such a thorough reply. I am not finding the itch bad enough to want to medicate just yet, but as you suggest I will start with OTC anti-histamine. I've already swapped to sensitive skin body wash and bought some E45 to cream up. In my bedroom draw I also have a tube of Germaloids, it says for inflammation and itch so I might use that too 😂 you never know!

Though I laugh I am not looking forward to progression of the itch which will no doubt happen as the years go on - I'm 52 and if I consider facing years with the itch I feel quite miserable. It seems that like you found, there needs to be a bit of trial and error and mixing different meds to get a result. What is upsetting is knowing that we are guinea pigs for these meds with some very unpleasant side effects .

I've read about Plasmapherisis and Nasal Drain, they don't sound pleasant😕just shows what some have to resort to to get relief.

I wish there were more info about diet - to me it makes sense to reduce bile acids so I'm going to swap to low fat where possible.

Best wishes to you x