I started having severe nighttime itching in Oct 2016. Spent a year trying steroids, allergy meds and getting allergy tests which were negative. Liver biopsy last month confirmed PBC, stage 1 no fibrosis. My alk phos, ggt, lfts were mildly elevated. As is my cholesterol and iron level. My M2 antibodies were extremely high (I don't remember titre).
So it was a partial relief to get the diagnosis because I thought I would get some relief from the itching. I started on Cholestyramine 4g powder 2 x day and urso 600mg 2 x day. Initially, I thought it was getting better. I have to say, even before treatment, I would have cycles where it was bad and times when it was improved. I couldn't correlate this with anything like diet or activity, so I never knew what made it better. It's just sometimes it was more tolerable. I'm now up to 4 grams 4 times a day and miserable. I'll have a good night where i itch but can go back to sleep. Then, I may have a couple nights where I am itching and scratching for 2-3 hours. And then, a night like last night, where I don't sleep at all because I'm itching and scratching all night. A couple weeks ago my G.I. doctor was out of town, and I was so miserable the nurse practitioner started me on rifampin 150 mg two times a day. I took that for five days without improvement and my G.I. doc took me off of it. Just wondering if it's like this for anybody else? When I itch it's my palms and soles and in between my fingers and toes, but it's not just there. My whole body. Scalp, arms, legs, back, abdomen... i'm calling my doctor back Monday. At the last visit, he told me that my itching is out of proportion to my disease. That I have minimal disease and should not be itching this much. It's great that I have minimal disease, but this itching is killing me. It's not minimal. He suggested maybe something else is causing the itching. Like I said, I underwent a lot of allergy testing so I'm sure it's not that. I got my PCP to refer me to a dermatologist to see if they had any ideas. I do have all of these hyper pigmented spots that of have come up on my body in sun exposed areas and non-sun exposed areas in the last 1-2 years, but especially over the last six months.
Any advice? I'm really desperate.
Edited to add: I also tried 3 acupuncture treatments. Maybe they helped but not feasible to go everyday. I tried CBD oil with no change. I was briefly on colestipol tablets but thing were worse on them so went back to cholestyramine powder.
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55mimi
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Hi 55mimi. Sorry to hear you're going through so much but i certainly can relate to your itching. I am not entirely sure if it is the Alk Phos that causes it, or what it is, but I have horrible days as well with the itch. Starts around 5pm and honestly goes on until 2 to 3 am! It is all over the body as well. I find laying down makes it worse and any heavy clothing or blankets is a no-no for me. Heat is brutal for this itch. I dread summer coming. I went 5 years with PBC before the itch started. I have been on month 6 of itching and honestly so depressed with it. I can't imagine a night of being itch free anymore. (The things we take for granted) I get why they say people get depressed or suicidal with this illness. Ice packs and keeping skin cool helps with the itch, that is for sure. Are you on Urso? I have noticed since I got my alk phos down, the itch is more tolerable although it is daily as I mentioned. I am going to post a new link of something I have been reading about and I am honestly going to give it a try as I too am at my wits end with this illness. Stay tuned.
Thank you. Yes, I'm on urso for about 30 days now. Cholestramine for 6 weeks.
I swear I can tell time by my itching. Most nights I go to bed at 9:00pm and wake up at 12:30 am itching/scratching. I can't continue to lay in bed so I get some water and snack and sit in a chair. I try to doze on and off in chair. Will make attempts to go back to bed. Usually around 4 am I can go back to sleep.
But 3 times in the last two weeks, i've started itching around 9 pm and it has continued all night long with only a few minutes of sleep. I've also noticed much more daytime itching before/after those nights. Before my diagnosis, I thought I was going crazy that maybe it was psychosomatic. And if psych meds would help I would certainly take them. I've been on low dose Wellbutrin for years for mild anxiety.
I am an "itcher" It took over 2 years for the specialist to work his way through the various treatments recommended for those of us with PBC and I now have a tolerable life again. I take 2 sachets of cholestyramine each day. One just before breakfast and one directly after or with breakfast. This unfortunately did not stop the itch but i had to wait for extra help because apparently it can take up to 3 months for the cholestyramine to get into your system. Later Naltrexone was added to the mix but it made me very aggressive so that was changed for Rifampicin and later 25mg of Sertraline was added to the mix. Prior to getting this treatment from the specialist the doctor had tried me on Cetirizine 2 tablets twice a day. This is an antihistamine and it worked for a short while.
URSO is prescribed relative to weight. Are you on 600mg or 1200mg each day. Have a look at your patient information leaflet (PIL) and hopefully the instructions will show you a chart for those of us with PBC rather than for the other disorders URSO is used for and you can check you are on the right dose.
I have seen it written, possibly in the PBC Foundation compendium that the amount of itching has no correlation to the disease progression. There are some who present with severe itching but are asymptomatic and yet others who may have cirrhosis have no itching. There is an article in one of the back magazines of Bear Facts, I think it is Spring 2015 where Professor Neuburger has written about itching. If your specialist is not very up on PBC he may not be the best person for you especially as he does not seem to recognise that itching is part of PBC.
Hope this is of some help. Search "itching" on this site and you will find many of us discussing the problem.
get back to us if you need more or contact the PBC Foundation by email or telephone them for some extra help.
Hello...So sorry to hear you are suffering with the terrible itch. I, as well as, others who experience it know how horrible it can be. For me, the worse part is wondering when and for how long it will last this time. Mine was going strong during a very stressful time. Would start at 8pm like clockwork and last 2-6 hours...all stretched up, sometimes bleeding from scratching. I tried acupuncture, once I tried steroids, but never again. Then I tried THC capsules. The itching calmed down. I also gave up lots of foods for a long time. Seemed nuts, seeds, fish, dairy, all cause itching, so out the window with them. I can now tolerate them again, but am extremely cautious. I continued trying different things, but it's like my body needed a rest from anything with fats or inflammatory foods. The THC, not the CBD, helped the most. It calms inflammation, but also reduces anxiety rapidly. Knock on wood, haven't had the dread itch in almost 9 months. I started my meditation and yoga practice again and give all my worries to the Universe. Keep exploring different ways...warm baking soda baths, drink water with lemon/lime juice and a little baking soda, just try to raise your PH.
I find it very interesting & somewhat puzzling, why some itch & some don’t. I don’t think there’s a medical answer either. I read an article once, that suggested itching might be caused by the toxins in the blood that the liver is no longer able to get rid of.
Has anyone tries medicinal marijuana for the itching? Either the vapor or edible? My children suggest that it would take the edge off of the itching without the “buzzed” feeling from the 60’s product.
Hi...I am a medical marijuana patient. ANY form of THC will give you a buzz. I used the lowest dose capsules and put them in the freezer. Then i can cut them in two or more, depending on dosage wanted. For me, 5 mg capsule(a 10 mg cut in half), still gives a buzz, but not so i can't think...relieves the inflammation and anxiety, hence calms the itch down. CBD's are the only product that are not psychoactive(no buzz). They need to be taken on a regular basis for benefit. The true CBD's no the Hemp oil caps are about twice the amount of THC. Hope this helps
I have tried edibles in middle of the night on really bad nights. I don't think they helped but I also probably waited too late for them to help, maybe earlier they would have.
First of all, I would much rather have this conversation over phone, skype or facetime if possible because there is a lot of detail and probably more questions to come, but I shall do my best in the written form. Your writing tells me you are in the US. Which city?
So...
1) Itch is not related to disease severity. Irrespective of liver biochemistry or histology (cell change in the liver), itch can happen to all levels of severity. Itch can have good phases and bad phases. It is still not understood what causes the itch in PBC for all there is a lot of research currently going on, with new meds being explored in clinical trials also.
2) Cholestyramine can take a while to kick in fully. Are you taking them just before and just after breakfast? This is the time to take them, according to clinicians in Europe. Also, can I check you are taking all other medications 4-6 hours before/after your cholestyramine?
Cholestyramine is a congealing agent. It's job is to go into the stomach and soak up the mix of digestive fluids (including bile acids, cholesterol, etc) and get them out of the body. If you take meds at the same time, it will soak them up also. By fasting when we sleep, we create the biggest build up of these fluids in our bodies. When we eat breakfast (breaking our fast) we release the biggest amount of these fluids into our system. By taking the cholestyramine just before and after breakfast, we are soaking up as much of these compounds as possible.
3) Rifampin (or rifampicin) wouldn't normally make a huge difference after 5 days. The EASL guidelines recommend rifampicin as 2nd therapy if Cholestyramine doesn't work. However, there are risks and liver biochemistry needs to be monitored often. Very often to begin with.
4) The hyperpigmented areas will hopefully be seen by a dermatologist.
5) With regards to other things helping itch. If you are a member of the PBC Foundation, you will have access to the Bear Facts, the Compendium, our self-manangement app and also the EASL Guideline Lay Document. There are section in Bear Facts and in the Compendium (which is also in the app) called "Ditch the Itch" where members of our community share some of the more unusual techniques they have used to help their
6) Some members speak of oats helping, keeping cool (particularly at night) can help, a gentle soothing rub with a cool damp cloth can help. Also, there are distraction techniques: mindfulness, meditation, golden moment visualisations, etc which can help, though they sometimes take a bit of practice.
Thank you so much, Robert. I will join PBC foundation. I am in Nashville TN. I've been taking my urso and other meds around 6AM and 6PM. The cholestramine I take at 7am, noon, 4 pm and 7 pm. I can change that up. I am also looking for another GI physician with more experience with this.
Sorry to hear your so miserable I can tell you that my itching is also out of proportion to disease. I have very mild autoimmune hepatitis, very active PBC, lupus, & early stage breast cancer. The lupus I had for years, but everything else came early this year. I knew I was having liver issues, because my enzymes were elevated & I had itching mostly just at night.
Since starting ursodiol, I've been miserable! I'm retaining fluids, it makes me prone to constipation, I've gained weight for no reason, & the itching is 24/7. BAD itching too. Identical to yours. It's made me research alternative therapy.
I've just started Dr Burt Berksons therapy for liver issues. I'm floored that this treatment has been around for 20 years, yet no drs offer it as an option. Please research it for yourself. It consists of;
Milk thistle seed (900mg daily) can be broken into doses
R-Alpha Lipoic Acid (work up to 600mg over a week)
Selenium 400mg daily (two 200mg pills)
Dr Berkson had great success with all different liver diseases, including PBC & autoimmune hep.
I've started it 5 days ago & will keep everyone here posted.
(Also research, low dose naltrexone.)
Last week I had a blood test to see where the ursodiol had my liver function tests at.
I believe the ursodiol helped lower my ggt from 800 to 244. However, my other enzymes were either elevated or the same. So I'm more miserable on the ursodiol. This itching isn't living...
The way I see it, if the Dr Berkson therapy helps, it's a God send.
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I can tell you that my itching is also out of proportion to disease. I have very mild autoimmune hepatitis, very active PBC, lupus, & early stage breast cancer. The lupus I had for years, but everything else came early this year. I knew I was having liver issues, because my enzymes were elevated & I had itching mostly just at night. 
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