Be thankful if you dont get the itch in your hair! I get it on the back of my head and where ever I lay my head on the pillow it itches and burns. I can not sleep. I have started taking piriton which eases it ever so slightly but now they are saying antihistamines cause alzheimers! What can I do?
Has anybody noticed the itch gets worse in winter or is this my imagination?
I find my head itches on and off. If I think about it everything starts. When I wash my hair it always itches.
Piriton or the cheaper versions can help but sometimes it's only willpower or distraction that works.
Empathy ?
I get this most of the time - try using betacap - use it every day for couple of weeks - it can help. I have bad itch and rash over my back and belly at the moment so am back taking the Questran (CHOLESTYRAMINE ). Incidentally my hepatologist has advised me to take one powder every day even when I don't have the itch as a preventative - anyone else been told this?
I itch much more in winter, think its due to wrapping up warm. I usually keep pillow and bed cool I find it helps.
Hi, I too have had the dreaded itch for a few years now, however, I find when it is really bad having a bath and washing my hair with bicarbonate of soda dissolved in the bath water (soothes the itch). I take two satchets of Questran per day - morning and night and take Citirizine (antihistamine) once per day. All in all this makes it bearable. Good luck.
Hello crich.
I have used bicarb in the bath before today but not so for some time. I don't know about yourself but I used to find my skin felt so dry following using it in the bath.
I found Epsom Salts to be better. These are supposed to be good for muscle ache but also reputed for helping toxins rid themselves out of the system by the skin pores. I never had any problems using them but you do feel your skin is a bit drier.
I've even tried cider vinegar in the bath as that is supposed to have some qualities. I've also tried honey which did make my skin feel pretty good.
But now I am using either plain water or some good quality natural baby bath. I think the baby bath is worth the extra money as not cheap but I don't wear make-up, rarely do my hair with a colourant so for me it's my treat.
Hi, no my skin actually feels less dry - I then get my husband to apply oil to my skin. This appears to lock moisture in and I itch less.
Zirtec/citrizina é ok.
psoriasis could be see the Doctor my one gave me Dovobet very good hope this helps
I have had the head itch for a couple of years, my doctor gave me Betnovate scalp application.It is very good.
Hello windyridge.
Well from one itcher to another, it is awful. To me the worst thing with PBC. I started back early 2010 itching. At the time fatigued but didn't think much of the latter. It was 2 weeks later when I took myself off to the doctor due to intense itching all over my body. It was worst on my feet at the time, I used to stamp my feet on the floor to relieve myself. My arms were itching and also backs of my knees when I bent my legs.
Since diagnosis Dec 2010 over time it has eased somewhat and now I only feel prickly early evening and then later evening the itch does start. But it is not like it was back in 2010. I expect improved bloods due to urso that is causing a better digestive system has helped ease the itch but I do wish I didn't have it.
Like yourself I find I struggle to sleep at night due to itching. At night I tend to itch on my feet and toes more. I do occasionally itch on my scalp but that for me is of no significance really but it is at night this occurs. I find when I sit down around 9p.m. nightly for a bit of tv, a film maybe, I struggle to remain still for long as once resting I find the itch appears on parts that are where the weight is most. My arms will start if I am resting on them and also my buttocks area starts to itch too.
Now for me I find living in a house that is not centrally-heated and having varying temperatures around the room, due to this I find my itch feels much better in the colder months (I am in the UK). I sometimes find when I go outdoors and especially in town and shopping, with wearing winter clothing, my arms in particular tend to start itching due to then feeling overheated in buildings.
Though a lot say that the sunshine causes their itching to be lessened, for me I find any source of heat, especially summer to cause my itch to feel more intense. I think it does vary from individual to individual but I reckon we all experience the same sort of itch sensations as only someone with the itch of PBC will understand.
I get annoyed with a few people when they have said that they itch for this or that reason as the itch of PBC is not something that seems to be temporary. Once you have it you seem to be stuck with it unless there is a med prescribed that does help as in most cases it is found not to be so. (I've never had any meds for the itch as yet.) I know what a temporary itch is from pre-PBC but the itch I experience now is not something that is the same. You don't have any visible signs when you are feeling thyis itch but you can cause the areas where you itch to be noticeable (my legs below my knees have several new and old scars due to itching but also now 5yrs on with the itch some of my skin has developed a sort of toughness plus you can get what appear bronzed areas due to itching with it).
An antihistamine isn't really the answer for the itch of PBC due to it not being an allergy or allergic reaction. I was originally prescribed piriton back in early 2010 but a few days of taking it, feeling nauseous with it and it not doing a damn thing, that to me proved it wasn't any use to me. I suppose it depends on what one you get, the one I got wasn't a drowsy forming one but there is one that is. Maybe this is why it feels to help as it dopes one up and perhaps you can get sleep at night. I know for me when I do get several hours sleep I feel better in the daytime as I've sort of slep through my night time itching.
Some will say it isn't good but for me I have found the last 2 months of having a warm (not hot) bath in the early morning (I tend to read a book, only place I seem to be able to these days!) with plain water or odd days a bit of a good quality natural baby bath (with no artificial perfume (or parfum)) does seem to help for me. I have noticed over the last few months my itch hasn't been as bad in the evening. I think maybe due to the fact early morning bath opens the pores and releases what is said toxins. The itch is supposed to be some sort of secondary for getting rid of toxins as the liver normally does this. They leech out of the skin pores so we can remain healthy. It is one reason that I don't tend to use a lot of moisturising creams on my skin if I can. I find it starts me itching during the day as I think it blocks the skin pores.
Sorry for this being lengthy but I hope I might have helped in some way.
Hi Peridot
Like you I was diagnosed with PBC in 2010 and it started with aweful fatigue and aching. They have also discovered a swollen lymph node in my liver. The liver specialist blames the lymph node for my itching and the lymph specialist blames the PBC! I have been taking urso for a number of years and my LFT is now fairly normal. However the itch in my scalp does not let up. I take 4 sachets of questran a day and I still itch, especially at night. The doctor is now trying me with sertraline, an anti depressant. The itch in my scalp makes me feel like jumping off a cliff on occasions but I dont think I am particularly depressed. I would like to be like you and take no medication but I find it impossible not to.
Unl;ike others washing my hair actually gives me about an hour of release, so I think it the toxins coming out on to the skin which causes the itch although there is no sign of anything, like smell or discolouration.
I follow what you say with interest
Hello windyridge.
Sorry to read that you have been informed you have a swollen lymph node. I doubt it is to do with the itch in PBC. I say this due to the fact that anyone with PBC can itch and not everyone will have this swollen lymph node.
I think it varies greatly whre we itch with PBC. I have certain areas I never itch but others I do not every day, seems to come and go in various places. I do occasionally feel the itch in my scalp but it isn't peristent like in my feet and toes at night or a couple other places where I am affected at night.
Questran seems to be the first med to be tried for the itch. I read it can work with some, not with others. Questran wasn't originally marketed for the itch in PBC just like urso wasn't either (it was designed for dissolving cholesterol gallstones but found to be helpful in PBC). There are a lot of other meds out there that are used for other things than what they were intended just as Sertraline you mention you are about to take. I say if it does work for you and hope you do find relief with it, then it isn't exactly a bad thing.
I think we all know when we want to try additional help and in PBC I think you have to go with how you are feeling yourself. I sometimes think maybe there is something I could try to eradicate the itch but then I think another way but for the present I think I am handling it quite well so for me at the moment I don't want to rock the boat so-to-speak.
Please post back at some point to let me and others know how you are getting along with this change of med for the itching.
Like you, I also itch mainly on my scalp. Before diagnosis in 2013 itched all over but now it is mainly on my scalp. It does tend to be worse in bed and I think this is because of the bed being warm, also in Winter I feel it more, probably because of dressing more warmly and so the body heats up. I haven't taken anything for the itch as I feel that the less medication I have the better for me. I may be wrong but I've always believed in this policy. Hope you get some relief, soon.
Agree with you there alpha3.
I too have the same way of thinking, no medications if at all possible for me either. I only take urso and have since Dec 2010, nothing else. I was disheartened when I had to start taking urso knowing it is more than likely for life (unless another med replaces it). I never even took so much as a paracetamol if I had a mild headache either.
Hi Peridot, same for me, no type of medication since diagnosis, apart from Urso. I didn't take much before just the occasional paracetamol for headaches. However, at the moment I've had a very painful ankle joint fora month, starting before Christmas and leaving me unable to weight bear. I had Polio as a child but never had any pain until recently, so am now waiting to see a consultant ankle specialist to see if anything can be done. I'm finding it very hard losing my mobility as I've always been very active but am reluctant to take pain killers or anti inflamatories. I've had a very good life, so don't want to complain, but nice to get things off your chest. Thanks for listening. Not sure if it's the PBC or the old Polio causing the problem.
Hello alpha3.
I think it is a thing that we don't know if something else crops up healthwise if it down to PBC or a different gripe altogether.
It is said that we can have problems with absorbing certain vitamins (the fat soluble ones) and this can have that sort of knock-on effect that can contribute to others.
In the last 12mths I have found myself with a bit of a gripe with my left hand at the base of my thumb area. Though the area looks absolutely normal I can feel at times a dull ache if I am using my hand a certain way. Given it is my hand I have no choice really. I ignore it and some days I don't feel a thing. I think mine is more than likely wear and tear due to the fact I can actually hear a bit of a faint crunch-like sound when I move my thumb round. I am just hoping that it remains as is now continuously as I personally do not want to take any painkillers nor anti-inflammatories.
I was thinking perhaps including in the dietary foods that are said to be anti-inflammatory. I know onions are one of them. I'd have to look up some of the others.
Meanwhile I do think the best way round certain joint aches is to keep on trucking. It is said that for someone with arthritis that to keep on moving is by far the best option as opposed to not doing so.
I agree, Peridot, I am now able to weight bear again, after about five weeks so am getting on with life. I'll have to look at vegetables and their uses as anti inflammatories. Thanks for the advice.
I find one of the most difficult things is knowing whether symptoms are caused by PBC or by other things. It is tempting to put everything down to PBC but I am not sure that is right and I don't think anyone knows for sure so I try to keep an open mind.
Luckily I don't usually suffer too badly from the itch but when I do it usually starts in my head, neck, ears and getting too warm makes it worse so I see the value of a tepid bath. I do moisturise my skin as I think this helps me. To some extent you have to find out what works for you. A diary might help to identify your triggers. I recently experienced 3 sleepless nights with terrible itching and a nasty red rash after eating coconut macaroons - delicious but definitely not for me - could have been an allergy I suppose but it came on each evening and subsided at around 4 am.
Keep trying different things in the hope you find something which works for you. Good luck.
Hi I too have the same problem and now my hair has started to fall out excessively 😢
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