The itching is driving me crazy! I have a preliminary diagnosis of PBC...blood work confirmed. I'm waiting to do my liver biopsy.
Does everyone itch or only some of us less fortunate people? If you do live with itch...HOW do you do it??? My body feels like ive been rolling around in insulation. My hand and fwet itch so bad I've resorted to scratching them on the rough cement outside. It's more than I can take! 😭 It makes me a very unpleasant person to be around. I get maybe an hour and a half of sleep at night. I'm so exhausted during the day I can't function.
HELP!!!
Written by
marty102
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Look up a past post "itch that is driving me mad" as there are a lot of replies that may help you. I feel very sorry for you but have no experience that would help.
Hello marty102.
From one itcher to another, I can definitely sympathise.
Hopefully if you are started on the urso that is used in PBC then over time it might just lessen. I started itching intensely, very much as you described back in early 2010 and I didn't get informed I'd PBC until 2nd December 2010. I likened mine to rolling in nettles or being stung at random by a whole host of wasps.
The itch for me did start to reduce in longevity after some time taking the urso. I now tend to itch later at night and by 6a.m. I am normal once again but as the day starts to progress and eat it starts to come again, first of all starting with prickles in the day that isn't too bad but then it builds in intensity in the evening.
I find if I sit down and am not on the go I feel prickly. Laying down to sleep is the worst time for the itch in PBC. It's supposed to be caused by bile acid that is now compromised due to the PBC. It leeches out via the skin as a protection as it is toxic but it doesn't half cause torture to anyone inflicted with the itching it causes. My theory is that this bile reacts with all the tiny nerve endings and that is why it is any place on the body. I find late at night in bed it is my bottom half waist down to toes that tend to be affected. Any areas I have pressure on that can restrict blood flow (ie bending at the elbows - a nightmare using a telephone with a bent arm these days, get prickles there, also if I bend down at the knees) I certainly start to feel it there. I also feel my arms prickling when I wear long-sleeved tops, cardigans, etc.
Being cool can help lessen the itch sensation. You could request colestryamine (this is what it is known as in the UK) or branded it is Questran but there will more than likely be side-effects temporarily or on-going with it. I can't say as so far I've not asked for anything as I really do not want to add anything further to the urso. Never been one for taking any meds unless necessary and so far I think I've managed. I just don't want the diarrhoea that can come with taking the Questran as I've not had this problem with the urso that some can also encounter. Also it can be hit and miss and if it was a definite solution with the itch I'd have got it long since. (Questran appears to be the first line of defence in the itch of PBC, there are other meds that can be tried but I cannot say regarding these.)
I'd say the itch with PBC is definitely a real downer for one encountering it day in and day out. It causes broken sleep during the night as it does for me and I get tired some afternoons due to it.
I've tried allsorts since 2010 to try to alleviate the itch but have to say unfortunately I've not come across anything as yet that will really help.
Peridot...your comment is like I wrote it. It matches me perfectly. Wow! I'm so sorry you itch...but I'm so glad to know I'm not alone. I'm not so happy that we just have to endure it 😔
I also arrived at a stage where the so called itch consumed my life. In bed I would lay my arms either side on the bed to try to stop myself digging my nails deep into the flesh and at times tears would roll from my eyes, I have also used the brick pillar at the back door in the hope of gaining relief.
The various anti histamine tablets prescribed were no longer working and I was not under the care of a specialist.
I had read on various web pages about colestyramine in the guise of Questran or Questran light which does not have so many side effects but it does contain aspartame.
I asked the doctor to be referred to the specialist and at the same time asked for the Questran. Questran made me feel bloated and on the next prescription I asked for the Questran Light. (I am in the UK so all this is done through the NHS which takes time). Getting Questran into your system also takes time I guess it was about 2 months before I noticed real benefits but I still itch. In desperation I paid privately to see a specialist who confirmed that Questran takes time to get into the system but recommended a menthol cream which I found at 2% (this works) the product prescribed through the surgery was at 0.05% which is useless. This topical application gives temporary relief as do ice blocks directly onto the irritating area. I have chosen to keep taking Questran Light even though it has aspartame in it, it is a choice of benefits outweighing disbenefits.
A little while ago on another site I read of a PBC sufferer who iced her socks before getting into bed.
At one point I was taking Cetirizine two tablets twice a day, this calmed the itch for a while but when that stopped working I changed to fexofendine (I think it was called) to which I reacted badly. The there was nothing.
At the time I saw the specialist at the private hospital he did not seem to think much of anti histamines and their reaction to the PBC itch. I have now been told that my appointment to see him through the NHS will be in about 4 weeks time. It has taken 7 months for that appointment to come through.
Some suggest removing all irritating foods from the diet and certainly ready prepared foods that contain so many preservatives are an irritant but as I did not eat ready prepared foods I could not remove those from my diet. This year I have eaten less bread and no pasta, in the process I have lost 10 kilos but the itch is still there.
Ursodeoxycholic Acid tablets need to have a two hour window either side not to impact on other medication. Questran needs a one hour window before taking it and 4-6 hours after not to reduce the effectiveness of other medication so it is a bit of a challenge to find timings that suit so as to get the best out of all tablets. I am also prescribed a statin which is best taken at night and I have self medicated (recently) with a vitamin tablet containing A D E and K.
I hope I have explained the above clearly, sometimes the old brainbox gets into a bit of a muddle so if there is anything confusing let me know and I will try to re do it.
best wishes to you I hope you find a way through the itch.
Thank you! Lots of info I'm still waiting on my liver biopsy then I can start taking URSO. I took Questran while I was waiting to get into my GI doctor. Now no one will prescribe it until we've gotten the biopsy done.
I thought I was the only one using a cement block to scratch! I use one outside but I brought I small piece in to use at night...otherwise I'm out at 2am scratching in the front yard
I have found that certain food makes it worse. I am Greek and live on meat... but meat seemed to make me worse. I am now a veggie and it has saved me! I don't itch that much at all now.
I don't know if it will work for you but it did for me.
Were you eating processed meats like lunch meats and hot dogs? I noticed the day after I had a hot dog, my feet and ankles became itchy. I figured it must be the nitrates in the hot dog. I eat a lot of fresh home cooked meats and are not bothered with itching.
Different meat caused varying levels of itching...it takes your body a long time to digest meat and the liver cleans out all the toxins so you can see that kg our lives aren't working how are you expecting the toxins to come out??? It causes that damn itch!
My consultant said I am the youngest person he has diagnosed I was 27 at the time I am now 28. He wanted to help me slow it all down and control the uncomfortable itch.
Also I was told that I had to be under bmi so that I help my liver by having less fatty tissue etc..not make it work too hard. I am not big but the doctor said it would help. Just a thought...
Honestly you know your body so listen to it... have a food diary and work out what makes you itch more. Honestly I don't take any meds other than urso and eat veg and fruit... also some fruit makes me itch more so be aware of that I.e.oranges (random I know!)
No, I don't usually eat that stuff. But I'm not watching what I eat like I should. We just moved and I don't have a stove yet...make everything difficult.
I think you're right about diet. When I was waiting to be diagnosed I just wasn't eating much...and what I ate was small amounts of lean meat (and sometimes none) but lots of veggies and low fat foods. The it seemed better...however, I can't be sure if it was the diet or the Questran I was taking at the time. I'm not taking it now...and I itch like hell...but I'm also eating poorly, too.
Sunbathing helps, but a little difficult to do in the winter months. Watch what you eat. Stay away from processed foods like hot dogs and foods with preservatives. Drink and eat dark fruits like blueberries for antioxidants. I eat oatmeal, oat and nut bread, etc with every meal to help eliminate toxins from being absorbed into the body. Oats help to lower cholesterol. Says so right on the box of cheerios. Also eliminate high fructose corn syrup from your diet. It causes fatty liver disease. Try these things and let me know if it helps you , too.
Marty I have been suffering with this itch since 2009. Some days are not so bad, but I rather take that than the fatigue. During November I was hospitalized twice. My immune system played one of its games again, and I had the symptons of heart attack. Was so tired, bloated, the reason was all due to the liver. I am no longer fatigue, but the itch,I know is part of my life. I also have to be very careful of what I eat, and definitely no gluten. Within 2 days in hospital I lost 2kg of weight (water retention). I am not overweight. Suffers from Hashimotos of the Thyroid as well. All the best
I was just diagnosed with pbc less than stage 2 and carry the antibodies for hashimotos and graves! Can anyone shed light on what diagnosis means? Can't get in to see get liver specialist until January.
My doctor prescribed Naltrexone to hell with the itch. I have been on it for a few years now without issue. It doesn't take it all away, but it helps with the majority of it. I remember back in 2001 when my hands and feet started with very noticeable itching; I was in the military and trying to scratch your foot that was inside of a combat boot was HELL! I didn't get diagnoses until 2005 so I went a long time without them knowing what was causing it. Anyway, before the naltrexone I would take Benadryl for the bad itch spells. I will pray for you because I truly know what you are going through.
Yes, she prescribed the low dose Naltrexone for the itching. I may have to have them increase it because 10 days ago I finally got the Obeticholic Acid to take with the Urso and my itching has gotten worse. It's one of the side effects of the Ob Acid. Hopefully it's just temporary; if so, the normal dose I take of the Naltrexone is sufficient.
I myself went through the exact same thing, I was itching so bad I didn't know what to do. The ursodiol will help with the itching almost immediately once the bilirubin gets to moving again. But it didn't stop there for me I was also diagnosed with scabies and it was horrible, so if you feel like your getting bit
By fire ants have it checked out. Hospitals and medical clinics is a sure way to pick
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I'm still waiting on my liver biopsy then I can start taking URSO. I took Questran while I was waiting to get into my GI doctor. Now no one will prescribe it until we've gotten the biopsy done.
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