Itching

[Karlimc93]

Itching.. What Sony people use for this.. I have bad days and good days.. But the past few days it's been a nightmare it's worse after the bath. Or when I shave.. Please help me... I have tired everything for this

[Hidden]

Hello Karlimc93.

Sorry to read you are experiencing a fraught time at present with this dam itch of PBC. I too am an itcher as you may know from my postings.

I am sorry I cannot solve this itch as I haven't so far and believe me I've tried various things over the last 6 and half yrs I've now been itching.

I actually found that shaving my legs caused me to itch more long time ago so I ceased. I started to find that where the hairs had been shaved when they started to grown through with itching on my legs below my knees later day and evening, simply caused the pores to either start to block in places or temporarily become infected and not look nice. Soon heal but I have found that then the hairs seem to become trapped as the pore seals over and it is then that I feel that bit more itchier there. Although I do find that when there is hair growth it becomes softer but at the same time it then can cause a bti of itching but not as bad as shaving. (I only have ever shaved my legs below my knees.)

One good thing I find for promoting skin healing is some salt thrown in the bath. I find that bathing is best early morning as opposed to the evening. Maybe a night time bath opens the pores and we feel the itch a bit more?

I find trying to keep as cool as possible works pretty well to keep the itch at bay. Also I've found that in the past when my shoulder wasn't so good (I do think now not PBC connected, reckon I once injured working in a manual job 2yrs before starting to itch (how PBC was found in my case). I believe the injury was called a 'rota something'. Using a bit of Tiger Balm the cooling one (white version) on the area as you are getting in bed, the coolness (probably due to it containing menthol) actually can detract from feeling the itch but at the same time if you are fortunate then you can drop off to sleep. (I itch throughout the night and most nights I struggle to sleep so feeling this itch worsens it for me.)

I've not gone down the route to taking any medications for the itch but the first line to try is generally colestryamine (branded Questran). I've been reluctant so far as it seems that it is hit and miss. If I was informed by a doctor it worked in all cases with the itch then I'd probably have been taking it.

I try to keep on the go during the day, hard at times with broken night sleeping as then come around 3p.m. every day I feel droopy and tired and hand in hand, tiredness (or fatigue as some experience that I've not actually had since sometime in 2011) plus the itch do not go together.

[Rockie in reply to Hidden]

Hi Peridot. Our diagnoses are very much the same. It is as if I am writing it. As far as shaving the lower legs, I use my late husband's electric shaver, and found it to be a better way of shaving. I know came to the point that I have accepted the itch, know it will always be there, some days better days and then you get your really bad days. Antihistamines do not help, Questran neither. The only thing I really benefit from was cutting out gluten and also the occasional glass of wine. I try and eat as healthy as possible and find a few cups of coffee quiet good and I enjoy it. For dry mouth I use gliserine (just a little bit) You right, epsom salts better than bicarb to bath in, and of course soap without perfume. Just so grateful for all my PBC buddies, because this is a very lonely road. Even the usual doctors lack the knowledge I get from you. Go well.

[Hidden in reply to Rockie]

Hello Rockie.

At the moment I do not encounter what a lot of others have with PBC, the dry mouth so I have to be thankful for that but as we know, never know further 'down the line' with this PBC...

I was originally prescribed antihistamine (the Piriton - I checked the prescription as knew you could buy over-the-counter and was far cheaper) when I first visited the GP early 2010 when I was itching intensely. Of course all it did for the few days I did take was call nausea and it did absolutely nothing for the itching which as we know wouldn't as PBC itch isn't caused by allergies.

My son had a bowel issue several years ago and after hospital investigation that nothing was found it was thought by the consultant that over-use at the time of antiobiotics was the cause and he was advised for a spell to lay off gluten (wheat specifically) and see how he faired. I bought gluten-free foods and to be honest can't say it made much difference at all to the itch of PBC in my case. After a few months this was dispensed with and gluten products were re-introduced slowly by my son so I got back into my normal way of eating. I wouldn't say I overly-consume wheat gluten in particular anyway but I just continue to eat as healthily as possible. Might not rid us of the itching but at the end of the day it might just keep the rest of our body in better health so that we can at least feel better and also my way of thinking, maybe it can halt progression of PBC in some way.

[DeeSree in reply to Hidden]

HI Peridot, I seriously agree that not only gluten is an issue but so is sugar, the more sugar I have the more i itch. When I first went on Urso the itch seemed to have gone away for the most part. Now months after starting on it I have noticed the itch again but not as severe. (thank goodness) When I cut back on the sugar or not use it at all I notice the itch is not there. One thing I have noticed that what used to be contained on my back is now on my ankles and its like something is crawling on them. That is new but not regular. I guess we all learn this is a process. Glad there are so many on this list willing to share and understand. Thanks again.

Dee

[butterflyEi]

Hi Karlimc93

The itch is an absolute nightmare! I started to itch and was told to take an antihistamine. I did this one a day for quite a while but in 2013 the itch moved up a gear and I was prescribed two cetirizine twice a day. This was beneficial but did not mask the itch completely. Back in February this year the GP tweaked my dosage of Ursofalk because of weight issues and the itch started to slowly burn at regular intervals. I waited for my body to settle into the new dose but eventually on contacting the surgery I was prescribed another antihistamine. Not sure of its name but it was something like fexofendine. I had a reaction to this antihistamine and came off it quite quickly. I was in the process of changing surgeries and on the interview with the new GP I asked her about Questran Light which she prescribed without hesitation. In amongst all of this time I was desperate, I was icing my arms in particular and went once to the chemist for help and speaking to the pharmacy assistant was nearly in tears.

I have been taking the Questran Light for about a month. After the first week I increased the dose to two sachets but became ill so went back to one sachet and although the itch (burning sensation) is ever present it is controllable.

I am hoping to see a specialist sometime within the next 3 months, it will be my first visit to a specialist in about 5 years however "the itch" will be one of my main questions.

I hope this personal experience will be of some help.

best wishes

[cazer]

Try a cooler shower instead....for me the heat brings out the itch more. Try having a restful few days if you can as this may help a little bit.good luck cazer.

[bartholomewpatri]

Cholestyramine works great

[teddybear7]

It's horrible the Drs can prescribe something called questrian but I've controlled mine so far ( well so its bearable) by plastering e45 cream ( care cream not lotion ) all over after every bath, shower or swim.

[mandilou]

I've suffered itch for 21/2 years and omg I am at my wits end, I'm covered in scars and sores so always covering up or going nowhere ;( it's horrid!!!

I saw a dermatologist Wednesday and started phototherapy Friday I go 3 times a week and been told moisturise 4 times a day- I'm also on prednisone as phenergan etc don't work

Worst side effect ever!!!

Hope u get relief soon- 2 minute showers r best so bathing isn't really good as its drying the skin - I've always had bicarb soda bath and it's dried my skin terribly -

Have u been back to specialist? When were u diagnosed ?