PBC itch relief

[Larrysgirl]

What can help with PBC itching? I've already tried all the over the counter meds and the 2 prescriptions the Dr gave me. Nothing is working and it is greatly affecting my ability to live normally, I cannot sleep, my skin is getting calloused, and I'm constantly exhausted. Any advice will help, Thank you so much

[butterflyEi]

Getting the balance of medication to control the itch, I believe, is trial and error. A hepatologist is able to best advise however for myself it took a while to settle on my current cocktail. I started with anti histamines when that did not work colestyramine was tried later Naltrexone was added but I became very aggressive so we moved onto Rifampicin, which was a real game changer however I still had some trouble so 25mg of Sertraline which can go up to 50mg when I have a flare. Due to COVID and the country where I am currently living I have been unable to buy Colestyramine (questran). Instead I continue with Rifampicin, Sertraline and Gabapentine (Neurontin). And of course my dose of URSO. A 2% derma methol cream helps confuse the skin but as a topical agent its efficacy is limited. And before all of the above trials I used ice! I hope some of the above will help you to get the right help from your specialist.

The book by Professor Jones, PBC The definitive guide for patients with primary biliary cholangitis which can be bought from Amazon is a useful reference tool helping us advocate for ourselves when dealing with the medical profession.

Whatever you try it may take a while to get into your system so please do persevere.

Best wishes

[Larrysgirl in reply to butterflyEi]

Thank you so much for all the info. I'm going to print this and take it to my Dr when I see her on the 12th. I think the next step she is considering is going to be Zoloft. I really appreciate this info as I feel I am almost beyond help. This lets me know I am not at the end of the rope ☺️and there is light at the end of this crazy, itchy, sleepless, tunnel... LOLThanks Again, Anni

[butterflyEi in reply to Larrysgirl]

Sorry I have only just got back to read your and Lilbear89 comments. Please take a look at the EASL guidelines and easy to read format available on the PBC Foundation website. This official document is available to download and is an aid to the medical profession how to help give us the best outcome. The PBC Foundation is also able to help if you contact them directly. Hope this helps

[Larrysgirl in reply to Larrysgirl]

I wanted to update this. I am on 50 mg of Zoloft a day and it has helped a lot. I still itch some but not as much.

[genj65 in reply to Larrysgirl]

Is Zoloft still helping your itching? I just started taking over the weekend.

[Larrysgirl in reply to genj65]

Yup, I take 50 mg every day! It's still working! My life is so much better since the severe itching is under control. I can get a restful sleep and my skin is all healed up.i pray it works as well for you.

[genj65 in reply to Larrysgirl]

WOW!! You just gave me hope 🙏I experience dreadful itching and my skin is ruined and my grandkids see me bleeding from scratching and try getting me bandaid. I must be honest and say I started 25mg on Friday and Dr from University of MI said take 50mg but I'm the type of person that reacts to medications at too high of a dose so my plan is to increase to 50 MG if I notice even a little less itching. Thank you for taking the time to reply. I assume you didn't have many bad reactions to Zolof either? We are all different but I pray to he able to connect within the next month to tell you I see improvement 🙂

[Larrysgirl in reply to genj65]

You are so welcome... that's what we are all here for, to help each other. I haven't had any negative reactions to the zoloft. I'm so sorry that you are going through this. It is extreme and hard for other people to understand. My hubs felt so frustrated and angry at the Drs that nothing would help me. I have custody of my grandchildren and homeschool them. Life was impossible. I wasn't getting any sleep and had bleeding sores everywhere. Completely debilitating!! I was trying to be patient and went through all the other meds that usually help others and finally landed on the zoloft. TOTAL GAME CHANGER!!!! I feel like I have gotten my life back. Please keep me posted with this. I'm Sendin hugs and prayers to you, Anni🥰

[genj65 in reply to Larrysgirl]

Awe I so understand everything that you experienced from this and may God continue to bless you!! I will for sure keep you posted I think you've encouraged me enough to take 50mg starting this evening when I'm due to take my next dose. I appreciate this very much. It's like God knew what I needed to hear 🙏 Thanks again,

Genelle

[Larrysgirl in reply to genj65]

Genelle, That's a beautiful name

You are so very welcome.

Yes God does hear and love us.

Blessings, Anni

[genj65 in reply to Larrysgirl]

Thank you.. My oldest sister picked my name her name is Geneva sne wanted it to start with Gen 🙂

[Larrysgirl in reply to genj65]

So sweet

[mrspeffer2 in reply to Larrysgirl]

My experience with Zoloft(sertraline) is that it takes up to two weeks to notice a change, so I don't quite understand those who use an increase in dosage as needed. 50 mg helped a little, 75 a little more...100 mg for me works great. No itching, able to sleep. My skin is happier from not being ripped at. Be well

[Larrysgirl in reply to mrspeffer2]

I don't think it took 2 weeks to work for me. The 50mg seems to be working very well. If I start to itch more (usually due to being to hot like in the summer months.) I'll up it to 100 for a few days and when I back it down to 50 I don't have any issues. I've only had to do that once last summer. We will see what happens this summer. My Dr. is fine with me taking 100 daily if I need to. I'm just thanking God that it works for me! Nothing else did and I was so very miserable. Happy to hear it works for you also!God bless, Anni

[rubberglove in reply to butterflyEi]

The book by professor Jones. Is he from Newcastle Freeman hospital?

[butterflyEi in reply to rubberglove]

Yes he is🙂

[rubberglove in reply to butterflyEi]

OK thanks. That's the one I'm under. I didn't know he had a book. I'll have a look for it. Thank you

[Lilbear89]

Would you mind if I screenshot the first reply also? I'm currently on piriton, sertraline 50mg and hydroxyzine and they are not working and have been itching so much and I'm still working and need to be able to get some sleep as need to be alert for my job.

I'm hoping that if I can show this to a Dr they might be able to help as I am still unable to get in contact with my specialist here in Swansea or my one in Birmingham.

Hope you are able to get it under control as it really can be horrible.

Sending healing vibes your way xxxx

[Larrysgirl in reply to Lilbear89]

I don't mind at all!!! I am truly sorry for what you are going through and hope you find the right cocktail also. I didn't realize so many people are suffering like this. My husband thinks I'm being over dramatic. I've been seeing a GI and she's been trying different meds but only one at a time. I didn't think to ask about mixing meds.I really hope you get relief soon... Hugs, Anni

[Lilbear89 in reply to Larrysgirl]

It's one of the worst things I find. The sertraline and hydroxyzine I take every night and the piriton is for as and when needed but if I'm having a bad day I can't really take anything unless I'm off work as they all can make me drowsy.

When I was first diagnosed I was put on rifampacin which did work for me but my G.I. didn't want me on it long term.

I also find that if someone doesn't have the itch then they can be quite dismissive of you saying you are itching as to them they think it can't be that bad it's only itching. At one point I was ripping apart my skin and making me bleed. It's mainly on my hands and feet now and everywhere on a bad day but my feet have never recovered from it really.

I hope you find some relief soon as I know it's horrible. One thing I did find that would work long enough sometimes for me to get to sleep was I would put clothes I had just washed on without drying them as I found it helped sooth the itch sometimes just long enough to get to sleep. But I'm a nightmare as I will rub my feet or hands on my bedding while I'm asleep also which results in friction burn then too.

Sending hugs xxx xx

[Larrysgirl in reply to Lilbear89]

You are right in saying that it's hard for people to relate, I too always have scratch marks and sores that bleed. I have gathered up all the info everyone has given me to inquire on the 12th when I talk to my GI

I also have found a ooler by chilly pad, if I can't find anything other solution. It is a pad that goes under your sheet on your bed that water flows through and the machine keeps it at a constant temperature that you set(Cool all night?) It is quite pricey $600. but if not other fix, my sleep might be worth it.

Girl I feel ya on waking up and rubbing or scratching hands, feet and everything in between.

I was put on hydroxyzine and even told to double the dose, it does make me sleepy but consistently I am up itching again in an hour and a half, I just feel it's not long enough to be worth taking. I haven't been put on sertraline yet but that is my GI's next course of action, probably starting Monday, Hoping for it to work

God Bless, Anni

[Hidden in reply to Lilbear89]

If I remember correctly in Prof Jones book, he said that antihistamines don’t help with the itch at all, he was quite categorical about it. But that GP’s just presume an itch needs an antihistamine when PBC itch is very different to an allergy itch.

[Larrysgirl in reply to Hidden]

Yeah I tried those first with out any results. I just started Zoloft yesterday with the knowledge my dr will add rifampin if necessary. I am super hopeful that will control the itching :)Thanks, Anni

[Shezza123]

Hi I sympathise with you I’m a fellow pbc sufferer and the itching drives me in sane at times , I have good and bad days but on bad days it’s constant itching from head to toe and it causes me to itch ,bleed and bruise . I lie in bed rubbing hands and feet together as soothing at time till stop . I feel the cold so used to being covered with quits and fleecy blankets in bed which don’t help when itchy so take off then too cold can’t win !! I take the urso and also prescribed antihistamine daily and colestrymine powders daily also have tried so many creams but don’t work as the cream makes me so cold .. hope you get some comfort from not being on your own with this and hope you get some help ,sherrie x

[Larrysgirl in reply to Shezza123]

Sherrie, thank you, I am so thankful to everyone here for letting me know I am not alone. There have been so many suggestions for me to talk to my dr on the 12th. I am hoping to find relief sometime soon. Big hugs to you as I understand just what you are going through.

God Bless, Anni

[SuziS]

I use E45 Itch Relief Cream which has something in it to help deaden the itch but I also have my hairbrush with soft silicon bristles which is great to scratch with and doesn’t leave marks!

[Larrysgirl in reply to SuziS]

Thank you, I'll look for the lotion

[Biddyb]

Sorry can’t help with itch as luckily I don’t suffer with it thankfully. If you can login to the foundation via Facebook on Thursdays they have a consultation with a PBC specialist 2pm you can post your questions for them to answer, if your not on Facebook there is another link give the foundation a call they will help. good luck

[Larrysgirl in reply to Biddyb]

Thank you, Everyone is being so helpful

[allotment]

I had bad itching with PBC for many months and was prescribed Qestran Light sachets. taking this medicine completely resolved the problem. When I had the itching it got so bad I would wake up in the night bleeding down my leg with itching. I know we are all different with this disease and can react differently to medicines but it sorted me out. Not sure if Questran is the medical name or a trade name. Good luck

[Larrysgirl in reply to allotment]

Thank you for the reply. My Dr has put me on zoloft with the urso.. I think it's starting to work.

[Lookforward]

Itching is the worst part of PBC So I do really understand how you are feeling .. not being able to sleep due to intense itching is the pits! there are prescribed meds that are more effective than regular over the counter remedies .. I was prescribed rifampicin when the itching became overwhelming .. I also found that staying cool having cool showers helped ..

not wearing anything synthetic .. no wool .. I think I wore cotton during the worst time ..

no spices - they made my itching worse ..

cut out bread and anything too yeast based ..

I was fanatical about applying a good emollient cream - lashings of aveeno as dry skin was more itchy

I also used aveeno for showering and found a very neutral shampoo ..

drink lots too ..

Non perfumed everything ..

One of the first things I noticed after liver transplant was that the itching had gone ..

😊.. two years ago this Christmas..

I am so grateful .. 🙏🏻

[Larrysgirl in reply to Lookforward]

Thank you for all the tips... Your story is touching, I'm so glad everything is going good for you☺️ my Dr has put me on zoloft and urso I think it's getting a little better