Itching remedies!

[Nikkipinch]

Hi,

Does anyone have any advice for anything to help with the itching, its absolutely driving me mad, I've tried the sachets but struggled to get them, so now on tablets, but still suffering with really excessive itching. Thank you!

[butterflyEi]

Over a period of time I had cetirizine 2 tablets twice a day which helped in a minor way until I saw the specialist who tried Colestyramine then added Naltrexone which made me aggressive that was changed to Rifampicin 150mg twice a day this was upped to 300mg a day topped off with 25mg of sertaline. When colestyramine became unavailable it was switched to cholestagel which I find easier on the tummy. Because of the virus I cannot get colestagel but have found colestyramine but am only on one sachet to reduce the impact on my gut, this was my own decision as I have not been in touch with the specialist. Whether you are in Europe or America the guidlines for PBC can be accessed from the PBC Foundation either on their app, web site or from them directly, these arm you with the knowledge of what the professionals recommend for treatment of PBC symptoms. Hope this is of some help.

Something that can be accessed easily, some find a bath in bi carbonate of soda helps but I have no idea how much bi carb to how much water but I guess enough to make the water soft.

[Lindz1]

Hi

Sachets helped me, 100% cotton everything, non bio washing powder when washing clothes. I am now taking sertraline which my doctor prescribed for itches and that really helps probably more so than the drinks

[vicary]

Hi how severe is yr itch ? tbh Mine was off the scale and I'd tried everything on the market , every med , every cream, every home remedy , also UVB treatment & plasma exchange nothing , I mean nothing worked , it took over my life completely , I've had PBC for over 8 yrs , but the last 2 with the itching where the worse 2 yrs of my life , my skin turned to leather , there wasn't any part of my body that didn't itch thus included my eyeballs , inside my mouth and places I'd rather not mention ! my feet burned and itched to the point I wanted to cut them off ! my body was black n blue , covered in scabs esp on my head , the pain was unbareable , I was lucky to sleep 1 he a night , I became so exhausted I could hardly function , depression set in big time , I became a recluse because to dress was unbareable ! I spent most of me time crying and in pain , I had no idea the impact it was having on my partner or family , they feared for my sanity and my life , it wasn't that I wanted to end my life , I just wanted it all to stop , I wanted to go to sleep for a long long time , if you can understand that ! this all changed when my partner & sister came to see my consultant , I don't have much recollection of this appt I could no longer concentrate on anything , sleep deprivation has a massive impact on you . My consultant said there was no more he could do for me and also feared for my life I was rock bottom , he referred me to St James in Leeds , this is when my life began to change I was now under some of the world's leading liver specialists , the scaring on my liver was increasing , my bile ducts where no good ,my liver was doing less n less jobs it just couldn't remove my bile it all went into my blood stream crystallized at the end of my nerves and nothing could break it down , they told me my it itching would just get worse ( worse how is that possible ! ) my livet would eventually fail this might be in 1 yr or 5 yrs there was no way of telling how quick it would accelerate, I just sobbed uncontrollably, I was told a liver transplant was the only answer , but they said they had to do something to help me get through until this happened , I was placed on the transplant list after many appt and assessments you are told everything from thread to needle and meet everyone who will be involved. In the meantime they referred me to one of their PBC specialists who specialises in the itching , extreme piritius is the technical term ! this man was amazing, this man put in a nasel billiary drain, this goes from the bile duct up through yr body out through yr nose down to the ground with a drainage bag on the end , gravity draws out the bile , it's not a long term fix but boy the relief was unbelievable within a wk I itched no more , now don't get me wrong did it come with its down points yes course it did but nothing compared to itching , I learned to deal with them , I was the 3rd person at Leeds to have this done , the 1st didn't have it long before transplant , the 2nd couldn't cope with it , well all I can say is their itching can't have been had horrendous because to me it was a life saver , I learnt and ended up knowing more about it than the docs , I could take it apart if it blocked ( bile is very sticky ) I knew when parts needed replacing and I knew when I needed a whole new one put in , I had mine replaced twice whilst on the list as they usually only last around 6 months due to the bile corroding them , then I had my transplant in Nov 2019 so im now 4 months post transplant ( but that's another story ) I'm sorry this is so long it's as short ad I could make it , I hope you find something to help but from my experience if yr itching has become extreme you won't but unfortunately you have to try everything 1st but do look up Nasel Billiary Drain , if you have any questions about anything don't hesitate to ask me , I'm not being cocky but I do feel there isnt much I don't know about the dreaded it or the drain and the transplant now , although the latter is different for everyone. Take Care wish you all the best x

[Nikkipinch in reply to vicary]

Wow, you have certainly been through it, I'm not quite at your stage but it is definitely impacting on my life in a big way, the itching is intolerable, like you I'm covered in scandal and bruises, where I'm scratching so much, the nights are the worst, getting very little sleep which is affecting my daily routines, I still work 2 jobs and have children, but really struggling with it all at the moment! Will look in to some of the different options offered and keep my fingers crossed something works, I'm glad you have found some release to your itching and I hope it continues to work.

Take care x

[Wocket]

Hi, I find my hands and feet itch and I use ice packs to calm it. Obviously this is just a short fix but I found it would be enough so I could fall asleep.

[Booboo3]

Wow what an amazing experience, and you told it so well. I hope that you

do well from now on, you deserve it. Big Hug Kandiepat

[Worried-mum1]

In my daughter's opinion, the itching gets worse when she eats certain foods. In her particular case, she finds eating pasta or prawns especially in the evening increases the itching. I do not know if food and itching can have a link but she is sure it does.

[Belgravia]

Hi Nikkipinch

I suffer from the dreaded itch too & it can drive one insane. Only recently I started to have a slice (thick) of lemon in warm warm (previously boiled & let cool) every morning before breakfast & I am sure it is helping me with my itch. Now I can get to sleep at night and for a good part of the night - before this I spent half the night awake & would end up taking a cold shower. I also use ice packs for feet - they usually erupt in the evening/night time also. Also Aveeno (not sure if I can mention brand here!) moisturiser with Oatmeal after shower/bath. This is good stuff!

I wish you well.

[Pat_H]

Sorry I sound like a marketing manager for Bezafibrate. I used to itch a lot and it can be very embarrassing when you're out in public and trying to scratch a part of you that you wouldn't normally scratch in public in such a way that nobody realises what you are doing.

Anyway, from the first day I started taking Bezafibrate the itching stopped! The only itching I have now is what anybody would experience - say a hair floating across your face and tickling you.

As a by-product it also took both my ALP and ALT numbers down into their normal ranges plus the fact that I've experienced no side effects.

I don't know what it's like for anybody else because I don't know anybody else who takes it, and I was the first person my Consultant prescribed it for.

I promise you the makers of Bezafibrate are not paying me commission - I don't know, perhaps they ought to!