Looking for any ideas to help. My itchy skin is driving me mad! It can happen any time of day but seems worse in the evening and during the night. I am currently taking 8mg a day of Chlorphenamine to help it, but seems to no longer work.
What causes the itch and what can I do? My arms are getting sore and I even itch inside my nose and ears. Lay awake yet again last night scratching, after two hours it seemed to ease enough for me to sleep. I might need to go to see my GP but hate to bother them.
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SweetJaney
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How are things going with the progress to transplant assessment?
Are you jaundiced just now? - I ask because the maddening itch is usually associated with too much bilirubin being in your blood stream - I would definitely go to your GP because this itch is another late stage symptom and progress needs to be made to get you listed for transplant. Blood tests for high bilirubin would be advisable.
Some people with the condition PBC (Primary Biliary Cholangitis) get prescribed a tablet called Ursodeoxycholic Acid (URSO for short) since their liver condition is biliary and can lead to this maddening itch. I believed others on here have used ice pack and cold compresses to try and cool the affected areas and give some temporary ease to symptoms.
I understand it is a hellish, pruritus can affect quality of life so badly that it can be an indicition of higher priory for transplant.
I have suffered quite a lot of itching from cirrhosis but my bilirubin is well within normal parameters and I do not have PBC. In such circumstances I understand the medication Questran also known as Colestyramine is the usual treatment. The specialist that I see prescribed this but I found it didn't work for me. He then said I could try URSO which Katie has mentioned and although it is usually presribed to dissolve and or break down gall stones and to disolve the bilirubin in those with PBC it does sometimes also work in people that do not have those conditions. I have in fact been taking it for over a year now and have found that it works for me far better than the Colestyramine and although I still have very occasional bouts of itchiness it is now much more tolerable. There are also various creams and ointments that you can buy over the counter such as E45 anti itch and some people also find that antihistamines work as well.
You are probably fed up with people telling you not to scratch because it makes it worse but I know from my own experiences thats easier said than done
Hi Katie, my transplant assessment at Birmingham is still on hold due to UKELD number coming down to 49. It seems to go from 49 - 59 whenever blood tests are done.
I do suffer with jaudice, husband says I do look more yellow than usual. I have just made an appointment to see my GP on Tuesday and will ask about the medication that you mentioned. The other tablets used to work, not sure why they dont now. I do have frequent bleeds from varices and last time needed 8 units of blood. I have had 3 transfusions so far.
I do feel so exhausted that this lack of sleep from itching is not helping! Many thanks for your reply Katie I appreciate the advise and will do what you suggested. Janey x
I think i'd be tempted to put in writing a request for you to be forwarded to Birmingham - I know the Edinburgh centre prefers to see patients too soon rather than too late and I personally feel you are being delayed too long (even at a score of 49 you meet the minimum criteria for listing for transplant).
You already have far worse symptoms than my husband in that he only ever had one hospital stay due to burst varices (his were then dealt with by repeated banding), only ever really jaundiced at that same time (2012)and hasn't been since. Hubby has no ascites, no jaundice, no itching, chronic fatigue (yes), clubbed fingers (yes), zero libido (yes), did have enlarged spleen and low platelets but they all went after operation on splenic artery & his spleen died, he does have minor HE symptoms.
Hubby is on 5mg Prednisolone, Omeprazole, Lactulose, Adcal D3, Rifaximin for HE and Penicillin (due to having a non-viable spleen).
He was assessed for and listed for transplant (June 2014) & delisted in May 2015 after an improvement in his condition & is now still being monitored by transplant doctors in case he begins to deteriorate again.
My point being you are far more poorly and displaying far more symptoms than my hubby who was assessed and was listed for transplant. I wouldn't sit back and let your local team keep you hanging on too long, we've sadly seen folks on here who's local medics kept them too long prior to transplant assessment and the patient didn't make it to transplant because they became too ill in the interim.
Don't need to get pushy but do write and state you symptoms and worries and request that referral be made as soon as possible.
Gosh Katie, I suppose it is worth considering. I have kept a folder with all my medical notes in and every admission to hospital. I will discuss this with my hubby. Would I need to tell my consultant at the hospital what I am doing? I suppose I have nothing to loose by writing. It worries me that if I have a missive bleed at home I have no chance of getting to hospital in time to save me. Doctors have agreed with me. I am like a ticking bomb. Many thanks x
I would write to your consultant - a request in writing is hard to ignore and it gets put in your folder and were something to happen to you and this request hasn't been acted upon it can rather 'bite them in the bum' so to speak.
It is what I had to do for my hubby, he was diagnosed after a massive upper GI bleed in April 2012, in January 2013 local gastro consultant felt he had done all he could and thought it was best we go to Edinburgh to 'touch base' with the transplant team even though at that time he felt hubby wasn't anywhere near transplant. In May 2013 I discovered that the promised referral was not done and in fact the local consultant had gone off sick himself so hubby had been waiting for an appointment that was never in fact coming at all.
I wrote to consultant's secretary and almost immediately a locum had my hubby in to local hospital clinic and referral was done straight away. Within a fortnight (mid June 2013) we were at the transplant clinic at Edinburgh and hubbies care was taken over by them including his banding regime.
In March 2014 blood numbers were out of range again, steroids for suspected AIH flare did nothing, fresh biopsy just confirmed advanced cirrhosis and in June 2014 hubby was assessed for and thereafter llisted for transplant ............... like I say he was never as poorly or displaying the serious symptoms that you are.
Now that he has been delisted we remain under the watchful eye of doctors at the transplant unit so that should hubby deteriorate again then he will get reassessed and relisted (hopefully).
Don't wait too long, you are legally entitled to a second opinion anyway so you should get the referral to Birmingham if you wish it.
I agree with Katie -my husband was referred to Leeds tranplant unit by his local gastroenterologist as he said he likes to refer his patients as early as possible so they are on the radar
He had a tranplant assessment last sept and was deemed too well at the moment but is under regular follow up at Leeds to monitor his health. He has cirrohosis caused by haemachromotosis and has portal hypertension enlarged spleen and one forming varice. So yes I would definately get refererred for an assessment if at all
I am three years post transplant and still suffer from itchy skin in the winter. This is caused by dry heated air. I use coconut oil twice daily which keeps most of it at bay. It is definitely worth a try as well as keeping a saucer of water by your radiators to help keep the air moist in your house.
I had my transplant at Birmingham 3 years ago. I had PBC with extreme itching, it was when I developed encephalopathy that it was decided I should go for transplant. My quality of life was almost nil, I couldn't drive or be left alone. My consultant at QE prescribed Rifampacin for itching. It was amazing, stopped it almost instantly. Trust me, you knew if you'd forgot to take it!! I hope this help and good luck x
There are different types of medicine for pruritis. If one is not working (or no longer working), your consultant will want you to tell him/her. They may prescribe an alternative that is more effective for you.
Itching is intolerable and you definitely deserve to try a different medicine if your consultant agrees.
Hi there--I have had that itch in the past and i know !!!!!!!!!!!!! what it's like. One thing that helped me was Lanacane Medictated powder. it helps to cool down the skin. You can get it from most chemists. I used to cover myself in it at night and it did help. It's worth a try. good luck with everything and i hope you get your transplant soon. Stay strong and keep positive x
Many thanks to you all, there are several options to consider. I will write them down ready to discuss with my GP tomorrow morning. It makes me feel so emotional knowing that there are so many on here suffering similar symptoms. I never feel alone anymore. Your friendships give me comfort x
I buy organic apple cider vinger and rub it onto the itchy places, just sit and apply for awhile, let it dry, the blood stream absorbs it, it works for me but I think hard exercise does too because it circulates the stagnation building up in our bodies. Sweeting in a sauna would do it too or a steam room.
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