ITCH

[Shezza123]

Today my itch is driving me insane to point of crying 😢, from head to toe I cannot stop itching I’m in bed and I’ve broke down in tears I just can’t take it any more I’m bleeding and so bruised got blisters from rubbing skin !!

[butterflyEi]

Hi Shezza123 as an "itcher" now medicated my heart goes out to you, I know exactly what you mean.

Whilst you wait for an appointment to see your primary carer or specialist may I make the following suggestions. Drink plenty of water. Avoid all fatty foods. If dairy of any sort is a trigger then swap your diet around for a while. Keeping your skin well hydrated and supple helps as well, a cream containing a 2% menthol (over the counter) Dermacool confuses the skin temporarily. I was never able to try Epsom Salts in a tepid bath which is also suggested as I can no longer safely get into a bath. Ice directly on the skin became a favorite passtime and when all else failed the brick pillar by my backdoor came in useful!!!!

When I first saw my GP she started me on 2 Cetirizine (an over the counter anti histamine) twice a day which did take some of the edge off the "itch". She was unable to prescribe anything stronger. In the end I paid to see a consultant (I am in the UK and waiting lists were unacceptable) he started me on colestyramine, dreadful stuff to take but the itch was worse so I persevered. In a short while Rifampicin was added, this was a game changer and I noticed a marked reduction in the so called itch of PBC. Unfortunately the unpleasantness of the itch was underlying and I have ended up with a mixture of Rifampicin, Sertraline and Gabapentin and for the most part I have found some peace from the itch.

I hope some of this helps, contact the PBC Foundation they may be able to suggest something or give advice on how best to see your specialist. They did have a survey on the itch on their app (not sure if it is still open) when all the information is collated there will no doubt be a publication.

best wishes

[Shezza123 in reply to butterflyEi]

Hi thank you for your reply , it’s so hard and effects my depression when gets really bad like yesterday . I don’t really know where it comes from it just happens out blue,. I was on the horrible powders but did nothing if anything it made it worse. When I’m itchy I find I can’t put any cream on as it just makes me have really bad sensation of a cold feeling that’s hard to explain . I going to try some antihistamine and take everyday .. thank you again , as your itch gone now ? X

[butterflyEi in reply to Shezza123]

Shezza123 part of the itch treatment I now take is Sertraline at 25mg and I can increase that to 50mg as and when necessary. Sertraline is an antidepressant and I have found it helps keep my mood much more even (although I have my moments!). For myself I do not believe it possible to dip in and out of treatment it needs to be a constant to block the nerve endings.

Not sure which country you are in but I would think your primary carer or GP would be able to prescribe an antidepressant. Some antidepressants have been found to work very well in PBC and there is no reason why you have to put up with the itch as there are alternatives to the dreadful powders.

Yes, for the most part my itch is controlled, I know it has not gone just controlled enough to give me my life back. x

[Shezza123 in reply to butterflyEi]

Hi I’m in the uk , I’m on antidepressants anyway so doubt would give me another one .. I will see how the antihistamine work if keeps it at bay as it has been a while since had itch like this till few days ago , seems to be at bay again today I’m just left with bruising and scratches again . Scared to start scratching again x

[Turquoise2075]

Hi Shezza. I just wanted to send my sympathy. I don’t get the itch as bad as you so I’m not of much practical help, but it has come up in other threads, so you could do a search under “PBC and itch” and hopefully there might be some info there that can help as well as the PBC Foundation. It must be awful. I hope it settles down soon and you start to feel better 💕

[Shezza123 in reply to Turquoise2075]

Thank you for your reply I will have a look thank you again x

[Turquoise2075]

Just saw butterflyEi’s helpful reply which reminded me that certain foods have increased itching for me. I also have psoriasis on my left foot, another autoimmune condition, and tomatoes seem to make that worse with red, itchy lesions appearing. I’ve been eating mostly gluten and dairy free as well which also seems to help.

[Shezza123 in reply to Turquoise2075]

That’s interesting thank you x

[liver-bird]

Hi Shezza123 so sorry to hear you are suffering. My itch is very mild but I notice that it is better if I keep myself cool and I never get it if I am cold. Hope this helps. Diane

[genj65]

I suffer from the terrible itching and NOTHING has worked for me far as medications pr plasmapheris and 40 sessions of UV light therapy so my University of MI Dr is suggesting I get on donors list but that's going to be an issue because I have RH A negative blood type and my donor would have to be a match and although my itching is bad my liver is not. I was prescribed zoloft a week and a half ago 50mg and so far still itching 😏 I take children's liquid benadryl nightly to fall asleep for the past 7 years. My Dr is okay with that a cup full usually helps.. I'm praying this zoloft starts to work for me because the itching is unbearable at times.. Goodluck with finding something that works and just know your not alone.. LIVE LOVE LAUGH