Experience with itching

I’ve had PSC for 12 years, but thankfully, a mild course. I have two questions for the community:

  1. My itching, mostly in my hands and feet, doesn’t itch like a mosquito bite. It’s closer to the pins and needles you feel when you’ve cut off circulation. I’ve dismissed the itching as PSC, but now wonder if it could have another cause (I’m not pre-diabetic). So, my question is: How do you experience itching? I’m wondering if other PSC patients have the pins & needles type of itching.

  2. I’m having more trouble with clothing, especially T-shirts. I can’t wear new ones, as they make my skin uncomfortable. I’m not sure if it’s the dyes, or perhaps chemicals they use to treat the material. I also have dry skin/ eczema, so could be that, or combination of PSC and eczema. Anyone else having this issue?


Thanks for your post. The itching you describe makes me wonder if you don’t have neuropathy issues in your feet. The pins and needles are tell-tale signs of that condition. I did have itching in my feet with PSC but it was more of a constant need to scratch the itch than a pins and needles effect. You might ask your doctor to check some of the labs that affect those type symptoms.
The issues you are having with your clothing, are they pain related or just a creepy crawly sensation with your skin? Have you ever had shingles? Could it be a form of PSC itching as well? Just some things to consider as you see more answers. Hopefully the others here will have some good ideas as well.


I’ve had eczema for 41 going on 42 years.

My dermatologist has prescribed me dupixient. Works great. However, I still have random itchy skin on my lower legs.

I got diagnosed with psc December 2018. It’s still mild. Hopefully will stay that way.

Hi Wtm,

I had PSC for many years and the itching I got was not like how you described. Mine felt more like a dry skin itch or irritation (even though i tried every lotion in the known world). So i don’t think what you are experiencing is from your PSC. Hope this helps and i hope you find an answer.

Thanks all for your responses - very helpful.

The itching is worse in the palms of my hands and soles of my feet. It’s a burning sensation, it is caused by another autoimmune response called Dermatographia. The response is like what would be experienced from an insect bite; redness, swelling and itchiness. The response is caused by pressure. Clothing creates a pressure on my body and my body responds. My hands and feet are the worse because I use them all the time, mainly my feet because I am up walking…as soon as I sit down, my feet start to swell, turn red and itch. I take a mountain of meds to squeal back my body’s response. I don’t think we have the same thing but there are some very odd diagnosis.

I had itch problems as well and found that an iron supplement helped significantly. My PSC caused anemia which resulted in itchy skin. I take half an 11mg tablet of Proferrin every other day. There are lots of other cheaper iron pills available but, this one works for me.

When my itching got to its worst, my dermo prescribed mometasone, a steroid-based cream. A bit unusual to use, but it cut out most of the itching after two days.

I’m having a confounding experience with itching, I’ve solved it (with a topical steroid) but I’m trying to understand why it worked, and what it means. Background is I had my transplant 8 years ago and have twice been rediagnosed with rPSC, both times apparently drivin into remmission (full normalization) with Vancomycin (or was misdiagnosed). On both resumptions of Vanco, itching went away progressively over 3 months (LFT’s normalized in one or two months). On the most recent experience the itch resumed a few months after apparent remmission - which worried me because it suggested the rPSC was still there and Vanco had not done its miracle. First thing I did was resume full 1500 mg dose/day (I had cheekily reduced dose prior to the 1 yr Cox protocol), didn’t work, change laundry soap and diet didn’t work. Hmmm. So I just remembered - years back- my GP gave me Betamethaozone topic (steroid) for red itchy rash under arm and knee pit, which were skin rashes typical of immunesuppression - and they worked great. So I used that very lightly on my legs, micro thin coverage, and the itch went away immediately. My MRCP’s etc are stricture free, so I am confounded by the Bile Salt source explanation for the itch in my case. Maybe I have some acquired eczema or something because I don’t understand why a steroid would work on a PSC connected, bile salt reaction. Any ideas, opinion or experience.?

What do your LFTs look like now? Did your last bout of itching match the pattern you typically experienced with cholestatic pruritus? In my case this would initially present on my palms and bottoms of the feet, which is fairly unusual for most other sources of itch. Are you having any other PSC symptoms?

How long are you taking vanco after recurrence is suspected? Is the prompt elevated LFTs and itching? How long do your numbers and symptoms stay normal after treatment cessation?

I’m not familiar with topical steroids typically working for PSC itch, though I haven’t researched the topic in a bit. That said, we don’t really know what causes the itching and there is quite a spectrum of anecdotal remedies (antibiotics, UV light, cholesterol meds, antidepressants, etc.).

I ran your post by the chief of liver transplant at Duke and here was his brief response. I hope this helps. --Mark

Can’t tell from this narrative if current LFTs are normal (particularly alk phos). If they are normal, would contemplate sending a serum bile salt level to see if there is objective evidence to support the liver as the source of the itching (versus some other dermatitis, etc.).

Thanks for responding jtb.

All of my LFT’s are completely normal range today and over the last year since resuming Vancomycin, in fact at the mid range. For both times since transplant that my LFT’s elevated to point of rediagnosis (those two ‘times’ separated by 1 yr Vancomycin course then 1-2 yr or so ceasation until LFT’s crept up again - both times LFT’s not substantially high, maybe 1.5 to 2 times max normal - remember that rPSC is very nacent PSC and we are observing LFT’s at an unusually early stage of disease progression and also notable is prior to my transplant my LFT’s were at 2 times 3 times max normal only).

On the cholestatic puritus, the two experiences with rPSC did match my ‘original liver’ PSC in character, itch to legs only. Note that I had definite strictures with ‘original’ PSC, none apparent in images on the nacent rPSC experiences. Where the ‘original’ PSC was a 8/9 out of 10 severity wrt itch, the rPSC times were maybe 3 to 6. On both rPSC times, Vanco dropped LFT’s in a month or two, pruritus dropped from 6 to 0 severity over 3 months. However the latest, it seemed to start again correlating with a 2 month delay after reducing Vanco dose from 1500 mg to 1000 mg (may not be relevant). The character of the latest itch was similar to what I’ve experienced - up to about a 6 out of 10 in severity, all on legs. The similarity had me confounded and concerned that the Vanco wasn’t doing its magic - again fully normal LFT’s (but last MRI was 2 years ago and normal). No other PSC symptoms really, maybe fatigue (but I might just be getting old and out of shape).

I’ve now been on the Vanco for 1 solid year at 1500 mg/day, minus the reduction experiment of 2 or 3 months - resumption of 1500 mg was 4 months ago and itch did not go away as hypothesised. Leading me to suspect the itch - although characteristically similar - is secondary to PSC. I do tend to patchy localized rashes in sweat areas like under arms, likely due to immunosuppression - which were alleviated by the sterioid prescription. I’ll ask my Dr. about what that skin rash penominon is, if its yeast or something, maybe it just ‘went global’ without redness and emulated cholestatic pruritus. This supported by your experience that steroids are not a common report for cholestatic pruritus (but I did see one poster mentioning steroid success).

rPSC diagnosis was elevated LFT’s and pruritus, and some elimations of other sources of elevated LFT’s - but not run to ground.

After stopping Vanco, my LFT’s stayed normal range but some began to slowly creep up in 18 months and most exceeded normal in about 2 years. That timeframe support rPSC diagnosis because original transplant to first rPSC was 2 years. I proposed to incredulous hepatologists (not the prescriber) that if Vanco is the cause of LFT normalization, if I stop it we should see re-recurrence in about 2 years (which it did) but hasn’t convinced them yet.
Again thanks for reaching out, I find your insights and inputs highly valuable. As you know, like you I am also no IBD. cheers RJM

Thanks! great advice, I didn’t know a serum bile salt level was a thing. I will be persuing that for sure. All LFT’s are back to normal in my transplanted liver, as said to jtb below, about mid normal range including Alk Phos is 55 U/L (range 40 to 140), I’m (gladly) suspecting a secondary non-liver cause to the itch (!! :)) , I’ve been through enough.

Does the leg itching resume after stopping the topical steroid? Perhaps serum bile salts, like bilirubin, may indicate that there is some sort of small-duct thing going on that can’t be seen on imaging.

Your experience with vanco is very interesting as I don’t think there are many adults taking it intermittently, or as needed, as you do. Dr. Cox attempted this with some pediatrics and I believe the average time to PSC recurrence (LFTs, symptoms) was something like 1-2 months, though there were a few that could go a year or two and at least one who never needed to resume treatment. I wonder, as you theorize, if the amount of progression plays a part in time to disease recurrence.

There are rumblings that treating intermittently is a bad idea with 1-2 anecdotes of patients who stopped who are unable to get it to work again. I’ve always wondered if the efficacy of this treatment is based, at least in part, on the type of bacterial bloom you get. I wonder if the treatment stops working because the vanco round 2 bloom is significantly different from the first one that worked. I tested my gut microbiome composition while on treatment and I plan to check again and compare if things ever stop working.

To be clear, I’m not taking the Vancomycin intermittently as a ongoing strategy. I concur that the limited accounts available show that this may be a bad idea. As you well know, we know so little, but some indications are Vanco works best if you are - as they say - naive to it (get on it the first time and stay on it, don’t go off and on). My going off of Vancomycin was a one timer done initially on a theory to allow a rebound of gut bacteria, effecting an overtaking of normal bacteria of any early of VRE. (This was a theory I picked up in conversation with a pharmacist and another pharmacologist, but found nothing in the literature to support). I intended to go off for a month but then stayed off in a pitch to my Doctor to prove cause and effect by seeing how long for recurrance of abnormal LFT’s and if Vancomycin would show correllation to normalization again… As I say it took 2 years off the drug (obviously my rPSC was very nacent unlike some of the published studies, and in theory the Vanco therapy reset my transplant to healthy) and the second round of Vancomycin (ongoing and lifelong) did - thankfully - normalize my LFT’s again (at least I think that Vanco was the cause - there has been correllaton twice afterall). But I can tell ya, that second time I sweated because I hadn’t been aware of the small evidence that some ‘haven’t responded as well’, taking it after a big pause like that. Note that Cox mentioned - and sent me an email to the effect - that the failure for ‘some’ to not respond as well on round two after years off Vanco, may be due to ‘more advanced disease’ (which is also logical and thankfully may be the reason round two worked for me ).

Two nights with light application of the steroid and itch is still gone a week later. Also my Bilirubin, like all other LFTs, are normal on the Vanco. So I’m delighted to assume that it was dermatitus or someing not directly liver related. Alternatively it could have been a small duct effect as you say - but I was hoping that the Vanco on very nacent PSC (rPSC) healed all such stuff completely.

Your experiment sounds very interesting. It really is up to us as individuals to understand and pave our way with this. I advised Dr. Shamita Shah at Osler Institute when I had an appointment with her, that as a PSC researcher she would be well to consider the group experience as documented on the livingwithpsc website ; a valuable resource for research ideas of which you are large component (not the usual source for the research communitity, which is limiting in my view). You would merit some coauthorships.

thanks for your reply!


Thanks for the kind words and for sharing your experiences, rjm. Did you test positive for VRE or were you being proactive?

It was entirely a proactive step, prophelactic, preventative. There was no VRE test or, as we know, much if any likelyhood there would be any. It was a theoretical measure to ensure that whatever the Vanco was doing (killing gram positive bacteria) it continued to be able to do, so that Vanco would continue to work for the rest of my life. But I won’t be doing it again, I’m satisfied with the few accounts availabe that VRE doesn’t happen with long term oral use.

Hi wtm,

My itching is pretty much dry skin that itches like the devil. I have had eczema for years before My diagnosis and always got Cortisone creams (Betamethasonvalerat) and they always helped. It still does, so I‘m not sure my eczema is from the psc. Might help regardless where they are from because they are used locally.

The pins and needles you describe remind me more of a tingling / pins and needles feeling I had years ago. They were a sign of lack of potassium.
Probably not your problem, but I still wanted to tell you. Might be something harmless. And at least it‘s easy to check by taking some electrolytes.

About new clothes - if your skin is sensible it might be anything. I have to wash everything before wearing it and also sometimes have trouble at hotels, because of their washing powder. If it stays after washing you might want to check the materials. I can‘t wear some polyester clothing as they don‘t absorb sweat very well and apparently I‘m more allergic to my own sweat than most people.

Good luck and feel better soon.

Thanks for sharing your experience. I’m seeing a neurologist next month regarding the pins and needles. Looks like I may have neuropathy - perhaps another auto immune thing. As for the clothes, I’ve tried all the different fabrics - 100% bamboo, 100% cotton, etc. I think I may be reacting to chemicals they use to treat the clothing.

I’ve had PSC since 2012, UC for over 30 years. With the PSC, I started having severe itching about a year and a half ago. Started with the scalp then moved down the body to pretty much every part of me, including the palms and soles of the feet. The itching got so back about 9 months ago I was having trouble sleeping or even wearing clothing, as shirts itched, pants as well.

I tried everything suggested by my Liver and Primary doctor. Lotions, topical steroid creams, Gabapentin, Hemp body moisturizer, but none seemed to work.

Happy to report though the doctors did find something that did work though! The drug is an Oral Suspension (drink the packet mixed in a glass of water twice a day) called Cholestyramine! Now it took a couple weeks to feel the effect, and it’s kind of like drinking sand (was told I could mix it into juice or any other drink if I wanted to but I’ve stuck with water), but it has been amazing. No more itching that will not allow me to sleep and I can wear clothing again without scratching all the time. My skin has healed from all the scratching I was doing, and I’m starting to feel like my pre-PSC self again, as this drug has been a miracle, at least for me.

My suggestion is to give it a try. If battling PSC like I am (initial stages of cirrhosis), and you have unbearable itching, it has been the only thing that I’ve tried that actually worked.


1 Like