Well my consultant said this itch would be gone by Thursday and as it seemed to increase each day, I was hopeful. It has not and is making me weep and want to find him and give him an itchy ear!!
I am looking online and there seems to be different strengths, so wondering do you go for the strongest menthol or could that make the itch worst.
I have also looked at other brands and seen menthol aqueous creams much cheaper.
One called Rxfarma AquaDerm in 0.5,1 and 2%.
Is anybody prescribed the creams also, wondering if I could ask the GP?
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Jo_Br
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Unfortunately any creams you use on your skin to try to eradicate or alleviate the itching won't seem to make any difference except give you temporary relief.
I've been itching 7yrs now. It's not as bad as it was in the early days as after starting taking the urso (December 2010) over time it has reduced and I tend to feel prickly odd times during the day (I find I can't bend my knees or elbows (to hold a telephone for eg) for very long as I know if I start to feel prickly the itch will follow) but it's late at night I do itch and it persists until around 6a.m.
At night I've found an odd time or two when my shoulder has been a hit aching due to lilfting things in the day (I think I did mine in manual work prior to itching 2010) used Tiger Balm White and the menthol in that cools the skin and it distracts from the itch temporarily sometimes allowing me to get to sleep.
The itch comes from inside our body and it's said to be used bile salts working their way to the skin surface. My theory is that with us having tiny nerve endings in our skin the used bile causes some sort of reaction and this is what causes us to itch. Due to the bile salts travelling in bloodstream, hence any where on the body. In a way as annoying as it is the itch is actually a secondary line of defense asit is said to toxic this used bile so it escapes via the skin. Not pleasant sensation and would be good to know there is something that we could do to eradicate it daily but currently it's hit and miss with treatments out there.
Someone one here once mentioned buying Aveeno (that I've noticed recently on UK tv) that is available as a moisturiser in lotion or cream form. Not cheap but I found it did absolutely nothing for me. I sometimes when I've been having a bit of a scratch on my legs below knees put a bit of Germoline antiseptic ointment on them and not only do they feel better awhile but my legs then look moisturised.
It's said from 'experts' that keeping skin moisturised is a good idea to alleviate the itch but sorry to tell the experts that it doesn't work. Your skin might feel silky soft but it doesn't stop the itching.
Your consultant doesn't know what he is on about re the itch. Urso is said not to eradicate the itch nor fatigue and I think it is an abotu right statement for the majority of us. Know when I saw the consultant up to the year after diagnosis (I asked to be discharged, didn't feel I needed to keep going. He wasn't happy but agreed saying that if there was any changes in future I'd return. So far not needed to do and I was discharged 2011. I go to my GP for the bloods taken), I mentioned that I was still itching like mad as I had during 2010 when I first saw him but he never even mentioned medications to try. My GP didn't seem that bothered either but I can tell anyone that if they were to itch like we do in PBC they would really know about it. I think it is permanent torture to encounter the itching day in and day out.
Thanks peridot, I know the itch is from within, it's up my nose, in my mouth, down my throat at present.
I already use Aveeno and it does not relieve any of this PBC itch.
However across my stomach, I have a rash that is itchy, it came up when I started itching inside and was caused I believe by me scratching vigorously. It's extremely itchy when the inside itch is not present, so wanted to try something for that skin rash/itch if anyone had the info.
I'm from Canada. I have had PBC for 10 years, asymptomatic for most of that time, but I experienced itching last year and I couldn't sleep or function because of it. I was prescribed Cholestyramine Resin (Olestyr Regular) and it changed my life. I was able to function again. Creams didn't help because the itching is internal. I hope this might help you.
I am only 3 days into diagnosis, so want to get the urso in my system, I think the Cholestyramine Resin is Questran, which I will try. At the moment I was interested in relief of the real skin itch that is as we as the internal itch.
Hi, I started Questron about a month ago and it's starting to work now. My PBC nurse suggested Dermacool cream, which is 0.5% menthol. She also explained that it helps because the brain is tricked by shifting the focus to the menthol tingling and away from the itch. I didn't find it helped because I couldn't really feel the menthol. Someone on here recommended Arjun cream, which is 2% menthol and I must admit it does stop me from clawing at my skin so frantically that I bleed. It has certainly worked for me and as the Questron gets into my system it does seem to all be better than it was. No instant cure I'm afraid but definitely heading in the right direction.
I itched badly pre diagnosis but in 2006 and with URSO I had stopped itching until 2014 (this is even though URSO is not said to stop the itch, maybe I was lucky).
I had been dismissed to the care of the GP by a specialist in 2010/11 so after quite some time of the GP trying with anti histamines to help me I asked to be referred to a specialist who I fortunately saw in January. Previously I had asked the GP for cholestyramine and had already started to get some benefit from these powders. When I saw the specialist he recommended a menthol cream but never gave me a strength. As I had to wait a long time to see the GP I went to the chemist told them what I needed and they supplied me with
I have tried the 0.5% dermacool with no positive effect.
I have also used ice directly on to the skin which like the menthol cream is also a temporary relief.
Stress does seem to make me itch worse and I believe you may have a stressful job as a full time carer. I hope you are able to make some time for yourself or have a sitter at least once a week to give you a chance to unwind.
The level of intensity of the itch varies from person to person and intensity during the day. I have just started (heaven knows why I did not think of it before) a chart to map the level of itch during the day as I see the specialist again on 10 April. I am now taking Rifampicin and have to be monitored a little more closely.
I have also recently joined in with the webinar being run by Robert at the PBC Foundation I missed 2 or 3 but the one before Friday when we met on air talked about the use of guided meditation and visualization to help make us positive. I have found a couple on You Tube that I like and have been taking every opportunity to listen to one or other each day. Overall I think they are having a beneficial effect. When I listen in the afternoon I have the best 30 minute sleep I think I have ever had
So helpful. I am waiting for that webinar. I have been trying to use my mind over matter, its early days and yes, tiredness from my daily and nightly care is getting in the way.
In a desperate itch all day yesterday and this morning. Both PBC and this rash.
It's the broken itchy skin I want to heal as that is upping the misery. However a few years ago my husband had horrific contact dermatitis, nothing was working and they were going to admit him to sedate him to try and stop the itch/scratch cycle and dose him with steroids for two weeks.
I read about a skin balm called Supersalve. We got a tiny sachet and he put a coin size piece on one of the least affected weeping area. It cleared it noticeably, over two months it cleared his whole body.
I suddenly remembered it had a menthol type effect from one of the herbs.
I slapped it on and instant relief for about 30 minutes.
I used it on and off last night and it has helped with the raised angry skin.
I do not expect it to stop the internal itch of PBC but the constant skin rash was soothed hence I managed to get back off after tending to my Granny and waking from the PBC itch.
I want to try the other meds you have mentioned, however my actual prescription of Urso needs sorting and steroids still untouched as I believe they are not needed for me.
I will make a note of all yours ButterflyEi, is the Dermacool or Arjan2% any good?
Is Rifampicin a med to help the itch?
Sorry more questions.
I will be doing some positive videos etc. I think it may be the only aid on this journey.
Hi Jo, Rifampicin is an anti biotic used for people with TB and other serious bacterial infections - it is not licensed for use in PBC but specialists have some leeway - however it has been found to reduce or eradicate the itch in some. I was first given Naltrexone but it did not suit me.
There is an article by Professor Neuburger in the spring 2015 edition of the Bear Facts magazine on itching and the medicines used to help.
It may be that you will need to see a doctor about the rash if your current temporary cure does not rid you of it.
Why have you been prescribed steroids? As to the URSO you say it needs sorting. The amount you take is relative to your weight. There is a chart to help you work that out in the prescribing leaflet. I was under prescribed for quite some time I currently take 12500 mg daily and weigh 78 kilos - I was heavier - my aim is to get down to 70 kilos so I can reduce the dose.
Do you have any help with your Granny? I know when my mum lived with me she would not have anyone else so getting time off was difficult although I did have more good nights with her than bad. Dementia is such an unkind illness and is hard on sufferer and carer alike.
I found the Arjun cream very good, I am just finishing that off now. Usual story with doctors and help - I bought the Arjun before seeing the GP then got prescribed 0.5% which proved useless then got another tub of Arjun cream before going back to the doctor to get Dermacool at 2% which is next. I have tried a couple of pumps from it though and it seemed fine.
no apologies needed for questions always happy to help if I can and of course there is a wealth of experience from all the other contributors.
Hope you are having a good Sunday. We are just back from a walk which was very pleasant and full of spring bird song.
I aim to see my GP armed with the PBC leaflet for Helath professionals. He was so good with everything up to now, I feel he will be a good support.
The steroids are my big issue.
My first appt went like this.
Dr at the hospital, said your immune system is playing havoc with your liver. Wrote prescription, said not much about the Urso, but said the steroids would look after my liver and after a while hopefully would just be a maintenance dose. Calcium to counteract the steroids as they can cause Osteoporosis. Promised me the itching would be gone the following day, asked about my bowels and if I had heartburn. Then arranged bloods to be done that day and some in 6 weeks.
I then said could he tell me what he believed I had.
He said your immune system is attacking your liver, don't worry at all.
Because of my symptoms I had googled and read about PBC, all my symptoms fit, so I said is this Primary Biliary Cholangitis, he said " No it's PB Cirrhosis.
I was shellshocked, I presumed that all the meds were for the condition.
So as soon as I read the leaflets for each tablet, I started to ask questions. First here and nobody is taking steroids, bar people with an overlapping condition like AIH.
I kept searching, nowhere mentions steroids
So either his reluctance to give me the name of my condition, maybe meant he has not told me I have another, or he maybe believes I have inflammation?
With further searching, the dosage of Urso is too low by 50% so I am having serious doubts about his knowledge.
Also the blood test sheet I have is testing for all but AMA, ( all the terms I am trying to learn)
So steroids are out, hoping I am not doing something daft, if I have got something else as well, but he should have said.
Seeing my Dr this week, I am hoping he will press the matter once he has the leaflet and link to dosage.
As for Granny, been caring for just over 4 and a half years. I finally got a day of respite once a fortnight and about 6 months ago as bathing became more difficult she now has a carer who does that.
Its a long long story as to why I get no help, cannot be solved.
With the fatigue becoming pretty bad, I am going to push to get more respite even if its so I can have a nap in the day as she is up and I am up with itching at night.
I want to keep her at home if at all possible.
Sorry a bit of a long post.
My daughter looked after Granny for the afternoon, so I got a little walk in too yesterday, feeling very fatigued by it, but my soul feels better for having some time with my husband to talk through this and then 'just be'
I use e45 cream after every shower bath swim etc. The itch still comes intermittently, my arms are worse. I had e45 itch relief cream for bad days but it stopped giving relief for more than 10 mins so the GP has given me some stronger stuff on prescription which does help is whilst i get to sleep.ine seems to get worse when I travel away from home, just been to the canaries for a week & it was bad. & The same when i went to Blackpool ( I'm in the UK.) Last year which makes me think the local water might have something to do with it.
I don't think it's a stress thing with me i was in the worst stress job ever & it made little difference, & i really enjoy traveling could be the excitement lol x
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Hi all, do any of you use artificial sweeteners, ie in tea, coffee, diet food?
Does anyone suffer with itching inside and outside the ear and what is the best treatment to use?
so what DO you do for the itch?
Do you feel your liver?
