Hello, and let me preface this with a bit of background to the situation. I was diagnosed originally with UC when I was 10 years old. Since then we have found that my liver enzymes were elevated and pursued further treatment from a hepatologist. At around 14 years old I was tentatively diagnosed with PSC through MRI, ultrasounds, and blood work. Due to complications with UC flares and medications my PSC was put on the back burner for almost 6 years. During that time I was still seeing the hepatologist, but no real arrangements had been made for me to get a liver biopsy to confirm the diagnoses and check the progression of the disease. I am now 20 and have finally received the liver biopsy to confirm that it is indeed PSC. Now, around 4-5 weeks before the biopsy I had started to get an odd itching. It would appear about 50% of the time I was awake. The itching felt almost like a sort of sharp pain and would appear all over my body. I will say this, the itching was not and has not ever been constant in that I wake up with it and it lasts until I go to bed. It comes and goes during the day. The longest it’s ever lasted was around 2 hours. Also the intensity can vary from just being slightly painful in a small area, to full on debilitating and all consuming across my full body. Now immediately after the biopsy I was required to lay there for 3 hours. After the 3rd hour I went to put on my clothes. During this time I started to get the itching pretty bad. Then all of a sudden my body started to become covered in a rash that almost looks like measles. The nurse noticed this and went to go get me benadryl. She couldn’t have been gone more than 3 minutes, but in that time the rash had already disappeared. I went home thinking nothing of it and that maybe I had some sort of allergic reaction to an anesthetic. After getting home 24 hours passes and everything seems fine, until I get this sharp pain in my right side directly below my rib cage. The pain was very intense and even prevented me from falling asleep. So the next morning I call the hepatologist on call and she instructs me to try some tylenol and if that doesn’t help withing an hour to come down. After an hour I went to the ER where they kept me for 3 days on iv vanomycin and ciprofloxacin and performed and ultrasound for a possible bleed. After the ultrasound turned up negative and the blood samples came up negative for a culture the best theory they could come up with was that the biopsy bruised some cartridge and that there may have been a minor bleed due to my decreases red blood cell count. During that time my side pain decreased greatly and everything seemed to being going well in that regard. This while ordeal was during the last week of January. The side pain has come back during this time and has lingered for the past 5-6 weeks. It hasn’t been nearly as severe but has been getting worse in terms of intensity. About 3 days later I also started on 500 mg of vancomycin 3 times a day. All this time my itching has been consistent with how they first started. As for the rash I get it about 10-15% of the time when I have itching, but never just the rash by itself there is always itching first. I’ve tried rifampin, atarax, and benadryl and none of them have seemed to work. I saw and allergist and he said to take 2 Allegra and 2 Zyrtec a day and that should clear things up in about 48 hours. Unfortunately that didn’t seem to work either. After seeing my Hepatologist today she ordered a new MRI for the pain, but in terms of the itching and rash she said those aren’t consistent with PSC. She said that the itching with PSC is consistent and she recommended I try another allergist. My question is has anybody here experienced any kind of rash like this and is their itching constant or comes and goes? She thinks the pain could be related to my gallbladder but I just wonder if anybody has experienced any of these symptoms with their PSC. Another thing about the itching is that it seems to be activity induced. I’ve gotten when I’m just sitting there, but if I do dishes or even laugh hard the itching is sure to follow.
in my personal experience with PSC , the itching does not come with a rash or with pain. I had itching in the past for three years in a row only during the winter months of the year, and it would intensify at night when i was out of the sun, but it was still there all day from the moment i woke up to the moment i went to sleep. Never in that time did i get a rash or any indication of it on the skin other than the scratch marks and blood from places i would scratch too hard. I dont know about anyone else experience , but personally i would push to look further into it.
Hello, I have to chime in on this topic. I have lurked here for some time. My son was diagnosed w PSC via liver biopsy last May. His MRCP was fine, all 3 of them, his liver enzymes are all very low, and sometimes normal.
My son started to have strange tingling and burning of his skin Around age 15(his UC, and PSC were diagnosed age 17) that is triggered by emotions and activities, and it too would disappear in minutes leaving no trace upon his skin. These episodes are debilitating to my son, he can’t go outside in the sun without a reaction, these burning more than itching, and sometimes cause tiny raised red bumps that also disappear within minutes of my son cooling off his body.This symptom still persists and we have seen an allergist who has prescribed Xolair that doesn’t do much for his skin problems ,but it does takes away all his gut pain, which is really odd. The doctors have called it idiopathic urticaria, and also aquired anhidrosis, ( He tests negative for all allergy tests) His histamine/tryptase levels in his blood are always normal. His CRP/ESR are always normal. He has a positive atypical PANCA1:640 titer. I guess I am wondering if anyone may know what this symptom is, is it a completely different disease or is it related to the liver?My son had had terrible luck with finding a good liver doc, we are in AZ…anyone have any ideas? None of his doctors seem to know what’s going on w him, we just want a safe long term med for this symptom, it’s the worse one he has. Prednisone does take it away, but his Cortisol levels haven’t gone back up since the prednisone last year, they are 9.5 , down from 23 in 2016. The GI doc gave him prednisone for a serious bout of colitis in 2016, which led to the pancolitis diagnosis then the PSC came two months later.
I am at my wits end here in what to do. I am all over the place in this post, I do apologize, but when I read this post I had to reply.
I am so grateful for this website, and the comfort I get from reading all the stories, in that we are not alone in this.
Thank you very much for the response. Although this dosen’t seem exactly what mine is like it’s very similar. At one point I had thought mine was caused by heat but I’m still not convinced it is as it has happened to me other times as well. In terms of doctors in Arizona, I don’t live there but I do know of a very good doctor at mayo. Not sure how old your son is as this doctor is an adult hepatologist. His name is doctor Keith D Lindor. He and a Dr out at Stanford by the name of Dr Cox have been collaborating on research with PSC and the use of vancomycin to help and even revert some of the damage of the disease. I have personally spoken with Dr Lindor on the phone and he is a very nice gentleman. I never did ask him about the itching or the rash though as time was limited. He may know what the problem is. Like I have said I am personally on vancomycin and while it hasn’t seemed to help with any of my itching or rash, I am hopeful that it will reduce my scaring in the liver. Anyway hopefully this information helps you find help for your son.
Thx for your response…I am wondering I guess if you think it’s caused from the PSC? It would seem to me that it is, my son’s skin issues comes on with any type of heating up of his core temp. It can be triggered by emotions: stress,anxiety, anger, if he exercises, stands in the sun too long, it can wake him up from a dream,alcohol can also trigger it. His skin will tingle then progress to burning pain all over, his chest and back will flush bright red and he runs to cool himself off with water. It will come and go in minutes leaving no trace on his skin. They thought it was a mast cell disorder. Which was negative. I just wish we could figure it out and get him some meds to treat it. He is on Urso 300mg x 3 a day.Balsalazide for his pancolitis, and VSL#3 along with fish oil and tumeric. I was hoping to get him on Vanco but no hepatogist here we have seen will agree to it. We have seen doctors at our teaching hospital here in AZ and they all say he’s fine, his bilirubin is normal and that’s all they look at. If you figure it out keep my son in mind, let us know. He’s so frustrated with it. He’s lucky his colitis is mild, his last MRCP showed normal ducts, but his liver and spleen we’re swelled up and a splenule has developed on his spleen. His liver enzymes we’re normal. I may look into Stanford, they seem to be more informed, I am afraid the docs here just don’t care enough. He’s 18 and deserves an answer but it’s hard to figure it all out. Thx again
Again this sounds almost identical to mine. The part about emotions is also true for me. It seems especially if I’m anxious or excited is when it’s the worst. The only thing that seems different is the cold water trick to cool himself off. Usually I will just lay still and it will go away. I may try the cold water idea though and see if it helps. Does his seem to go away immediately with the cold water or after some time still? If its after some time do you know if it will go away without water or not? Does it go away quicker with water? Also another difference is my Gamma GGT is usually somewhere in the 400’s and when I had the pain after the biopsy with my hospital stay it was in the 700’s. Also the rash is the exact same for me. Does he get the rash all the time when he has itching or is it just some times? Like I said in the original post, my rash only seems to be about 10-15% of the time when I get itching, but I will never get the rash without itching. Also it’s the same with the burning and how it slowly progress from the itching into that. Do you know if it ever happens in his ankles because it seems for me as my rash dissipates the burning comes on very intense in my ankles. Since you mentioned your son is 18 I believe he would be eligible to be seen by an adult hepatologist. Dr Cox I’m sure would like to see him. He is at the Mayo clinic in Phoenix Arizona. Not sure how far that is from where you live but even if it’s a long drive it my be worth the trip. If I ever figure anything out I will be sure to keep you posted.
I am amazed at the similarities as well. The pain goes away quicker w the water, the rash if it shows up will linger for up to half hour at most. He gets the rash about the same 10-15% of the time. He never gets the rash wout the itch same as u. Does your skin flush? His skin will flush bright red as the itch progress to the burning. The faster he cools off the less severe the pain. He said yes on the ankles. It will go away with the water, the water speeds up the cooling process. So when my son tried to do anything strenuous he says he will get the itch/burn until he can sweat…He says it feels like he’s clogged up in his pores and cannot sweat, when He makes his self sweat (which is extremely painful and doesn’t happen often due to severity of pain) his body will cool itself off and then it begins to go away, Seth has been advised to not exercise because he maybe overheating his body which is not safe,until we can figure it out. Well my son stopped all activities last May and hasn’t exercised since. This is not healthy at all. ( my son was always very active in track, basketball, and clubs. In till an g 15) Now He lives in fear of the burning pain, it’s awful , he can’t do anything anymore. I have heard of that doc, we r trying to get into Mayo now which is going to be difficult due to our state insurance. I hope to get him there I am afraid these other liver docs just don’t have a clue.
I had a perfectly healthy son till age15. As I said before he would get skin tingling when he would go out to do yard work, it(tingling) progressed to include all yard work, and after the shower, then it would include anger or anxiety. I was puzzled. The next year it began to happen more often and began to be very painful, it progressed to everytime his body would actively and passive heat up. It would be triggered 15-20 times a day at its worse, then the colitis began ,He had a 6-8 week bout of colitis with some slightly elevated liver enzymes which led to a referral to the hepatologist. He gave Seth prednisone which stopped everything, and he said Seth had UC, after a scope. Seth never had gut issues, or stomach aches ever growing up, so this had me stumped, I just couldn’t understand what happened to my son. The hepatologist wouldn’t do a liver biopsy so I went to another liver doc and they did a biopsy and said he also had PS C. all in a span of a yearand half. His MRCP are always fine, His enzymes are always on the low side , the GG T never over 250. We went to Phoenix Children’s hospital in 2017, and they said that Seth would be best seen by an adult doc, as PS C was an older mans disease, which was a lie. That hospital was a joke. So now my son is in between hepatologists.He is now 18. They don’t believe that my son’s skin issue is related to the liver, and I just don’t see how it couldn’t be, this all happened within a 2 year time frame. Sorry to ramble on. I just hope to get his story out there and maybe some answers. Thx.
Well although my skin doesn’t become very flushed it is a bit red. I also have yet to experience sweating with this problem as I too have tried to avoid exercise because of the pain it causes. Another problem I have is recurring c-diff. Has he or does he have c-diff at all? Also I’ve never had the rash up to 10-15 times a day. I’ve had the itching be that frequent but never a rash as much as that. The most I’ve had the rash was about 4-5 times in one day. If he showers does he ever seem to get the rash afterwards? Probably 75% of the time if I shower I will usually get a rash. Not sure if this is because of the heat from the water or if it’s from the activity of showering itself. I also understand the fear of living with this burning pain and itching. You feel like you can’t do anything. Does he ever get it with walking? I seem to be ok if I go short distances but other than that it will start to bother me. Also what about with driving? Not sure if he has his license but if I ever drive it can be awful. Same with riding in a car. Anyway, it at least gives me hope to find somebody so similar to my problem. It makes me think that there are others out there with the same problem that we may not even know about. Maybe at a PSC conference one day 2 doctors will get together and discover that both their patients have this same problem and more and more will come out about it. Also in my last response I had said Dr Cox was at Mayo clinic in Arizona. That was incorrect. Dr Lindor is at Mayo clinic in Arizona and Dr Cox is at Stanford. Anyway, hopefully your insurance is good at mayo clinic and you can be seen by him. I’d be very interested to know what he thinks of all this and if he’s seen it in any of his other patients. I’ll try and give Dr Cox a call and see what he thinks, especially because he deals with all the pediatrics. When I mentioned this to my Dr she had never heard of anything like this and thinks it’s probably allergy related. I do trust her opinion and maybe it is but finding you makes me think that there is more to it that just allergies. Also, does you son have any food allergies? I’m anaphylactically allergic to peanuts and tree nuts. Just wondering if that plays any role in this, though I doubt it.
Hi I have been showing my son our conversation and the similarities are amazing him, he had felt so isolated with this and is relieved to know someone else with a similar symptoms. Seth will get a reaction with just about any exertion that heats him up. He can walk and it will eventually happen just depends on temp outside. He can’t walk at all in the summer sun too hot, a reaction happened quickly. In the winter it happens less. He gets a reaction after the shower sometime its just a tingling of his skin , andit will stop when he can cool off, if he doesn’t it will progress I wonder if the severity of episodes s day can be related to his elevated enzymes, I guess I am wondering if his liver bile is getting backed up and causing this or not? He’s still trying to get his licence as this interfere like u, w driving. My son has no know allergies, all his testing comes up negative, the allergist is just stumped. I keep hoping that we can find something he allergic too but no luck yet. He’s been called hypersensitivive, whatever that means. It’s a relief to find someone else like my son, I am grateful for this site. My son’s doc all are stumped. I think if we can get to Mayo they may have more answers, but this disease is rare and complicated enough without a weird symptom no one can figure out. They say his liver disease is mild right now and that he should get on with his life, but he cannot even go out into the sun, he can barely finish high school, let alone get to college. They don’t realize how debilitating it is. I am curious as to what your doc thinks? Keep us posted. He goes to PCP in April,we will start referral to Mayo,his PCP is willing to do whatever it takes to get him there so we are grateful for her. Thanks again for all your words. Take care.
I wanted to jump in here on your conversation to inquire what his latest bilirubin readings were? What about his INR? All this itching and rashes leads me to believe the bile salts are building up in his skin due to a blockage. Has he had an MRCP lately with and without contrast? What about an ERCP procedure? There’s no reason why he shouldn’t be able to continue an active life at his age even with PSC. If you are not satisfied with the hepatologist he is seeing I seek out another. As for liver biopsies, they are not necessarily needed to identify PSC unless he has small duct PSC. Keep in mind with normal PSC, you have a perfectly healthy liver (no need for biopsy yet) but the bile ducts are diseased and over time they develop beaded appearances creating strictures that block the bile flow. These blockages cause the bile to back up in the liver destroying healthy cells. Then over time cirrhosis develops until it gets bad enough for a transplant. So in the early stages of the disease it is an unnecessary procedure to put the patient through. The new technology with fibro scan has reduced even the frequency of biopsies so that would have been my first approach on that level. But what’s done is done now, just wanted to give a possible reason why the first hepatologist refused to do it.
I hope he can get some relief soon. You might ask about Rifampin for the itching. I took 300 mg twice a day and it brought great relief. Finally, now that your son is 18, I would be sure and have two documents drawn up by your lawyer as soon as possible. 1) A health care power of attorney listing his parents or whomever he chooses, and giving you the broadest powers possible with that. and 2) A Durable power of attorney to handle his business matters. With HIPPA, you may one day find yourself in a jam with the hospital staff ignoring your pleas and requests since you have no say in his care now that he is 18.
Hope this helps some. Take care.
PSC 2011 / Liver Transplant 2015
Mark, I was just wondering, if you read the original post (I know it’s long) what was your itching like? Like I said earlier, mine’s not constant in that I don’t have it when I wake up until I go to bed. It comes and goes during the day. And about 10-15% of the time I get a fleeting rash that will last for around 5 mins and then disappear. Also the itching isn’t just normal itching, it’s painful; almost feels like needles poking you constantly in the afflicted area. Also the itching can be anywhere on the body. Just wondering because my hepatologist says that cholestatic itching is constant from sunrise to sunset. Also she says it’s not painful, it’s just itching. She thinks its probably some kind of allergic reaction. I don’t disagree that it could be but after finding somebody else with the same problem maybe it does have to do with the liver. Not saying this proves anything but it is interesting that there is somebody else with the same disease and problem. Also I personally have tried rifampin in the same dosage you said and it didn’t work.
I would agree that the itching was not constant and the itch would move around to different parts of my body. I do know that especially at bedtime I had to sleep with just a sheet summer and winter as my body temperature, at least the real-feel temp to me, I was very warm all the time. And in the winter, if I was in a store and I got too hot I would itch from head to toe until I could get outside and cool off. I don’t particularly remember a rash, unless it was in a spot I scratched it to death during my sheet. I did tear a hole in the bottom sheet of our nice set of bed sheets over time from moving my legs itching my feet during sleep. It was quite embarrassing to have to show my wife, but she was so understanding. One thing that really helped me during the difficult times of this disease was for my dear youngest daughter when she would come home from work to just massage my feet with a deep massage. It brought such a peace and relaxation which may have distracted me from the other PSC aches and pains. I do know what you mean about the shower aggravating the itching. That was true at times. I would often take a barely warm shower, almost on the cold side and did better.
Sorry the Rifampin didn’t work for you. There are other meds they can try. I would encourage you NOT to take Zoloft for itching if they offer it. It’s an antidepressant and it really messed with my head. I got off of it after a week I just couldn’t take something affecting my thinking. That’s some strong powerful stuff I’d surely avoid.
Hi Mark thx for jumping in. His bilirubin we’re and have always been normal, INR is 1.1, his MRCP in January showed normal ducts, as well as the previous 3MRCPs never a ERCP. His liver and his spleen we’re swollen by 2cm and a splenule has developed that hasn’t been there before and his mesenteric fat is inflamed and he has mild stetahosis. This is all from the MRI,MRCP done in Jan. His liver enzymes we’re normal. He cannot be active due to the burning pain he gets from his skin issues, they compare it to Anhidrosis or idiopathic urticaria( his doctors believe it’s one of those disease). My son was extremely active till age 15 when his skin acted up with this burning that is extremely painful and causes him to run for water to cool off. Phoenix Children’s diagnosed him with smallduct PSC last May. In 2015 my son got this weird skin issue,in 2016 a 6-8 week bout of colitis w elevated enzymes began this journey. The colitis was controlled w Prednisone which also took away the skin thing. I insisted on a liver biopsy and that confirmed the PSC. They also say he has pancolitis. All of this happened in a two year period. I had a perfectly healthy boy till age 15, then all hell broke lose. His fibroscan was normal last year. I guess this last MRCP/MRI threw me off because they said it would take 30 years to progress and the last test says his liver is swollen and what the hell is up w his spleen. I am all to aware of the difficulties of having an adult child w an illness, I am noone to them and Mark I will be working on those forms.
MATRYOSHKA is the first PSC person w similar symptoms as my son it’s unreal, my son feels some relief knowing there is someone else out there like him. The burning is right on, it’s terrible for my son, it causes him to isolate…I am urging him to try and read this site as it’s most helpful. ALSO I tried to get them to check for C. diff and they won’t…Im going to get his PCP onboard she will also get up to Mayo, I hope. Thanks guys for responding…
Also…I just wanted to say that Seth’s skin thing is triggered by heat and emotions something like autonomic functions. He doesn’t itch from sun up to sun down. It comes and goes. His skin flushes and tingles then if he doesn’t cool off it will progress to a burning, interesting the itch and pain are both on the same nerve receptors, and I wonder if that’s what’s confusing. It burns it doesn’t itch and it’s all over his body. The rash they are pinpoint red bumps like a heat rash that will appear at it’s most intense. The rash doesn’t happen every time, like I said if he can cool off fast enough . The flushing is a reddeningof the chest and back. His head an ankles will itch before and after the episodes which can last anywhere from a min to 5. The redness of skin will last up to 30 min. This will all disappear and leave not a trace. This symptom goes away when his body regulates his temperature, either by cooling off or acclimate . It’s so hard to describe and my son and I get so tired of hearing that he fine when he’s not. He cannot go out into the sun wout an episode, it happens with anger,anxiety, any stress, after showers all exercise, he had a sip of scotch for New year’s that also triggered an episode. They have ruled out mastocytosis, and carcinoid syndrome. I think it has to be from the liver. Like I said he is not allergic to anything we can find, all testing is normal, he has a positive PANCA 1:640 titer, his GGT is normal now but can get up to 250 , his liver enzymes will stay in the low 200s all very minor to the docs but not minor for my son. It keeps him at home doing schoolwork, he can’t go to school due to temp, fluctuating internal and external, it’s like his body cannot regulate temp. Sorry to drone on.
Would you do me a favor. In a few weeks I will be with one of my hepatologists from Duke Medical Center for a day of meetings I have been requested to go to on Capitol Hill regarding liver disease and the need of additional funding. I will have the opportunity to speak to a number of members of Congress about my PSC story with the hope we can get this funding.
During this time I will be with this hepatologist for a day or so for long periods of time. Would you mind sending me a private message and writing out in concise detail your sons medical story, what has been tried, etc., and I will have him read it and we will discuss. I’d like to try and help in this way if I can. Perhaps he or his circle of colleagues will be able to come up with an answer.
Mark on my gosh that would be wonderful…thank you. I am not sure how to send a private message but I’m sure to figure it out by next week. When day should I send the message by. ?
Just click on my photo in one of the messages above and then you will have the option to Private Message. It may be good to type it up in a word processor program like MS Word and then paste it all in when you are ready. I fly to Washington on April 17th with the meetings at the Capitol being all day Wednesday April 18th. I may email the information to him ahead of time and then tell him I’d like to discuss when we are together in DC. So take your time and try to keep it concise but to the point without rambling if you know what I mean. I hope something good will come from this for your dear son.
I couldn’t find how to private message you, hoping you are still active.
The skin issue you have described above is EXACTLY what I’ve been experiencing for the last 6 years of my life. It affects my life so drastically. Ive been to the doctors a few times but they have never said anything useful, only tried strong antihistamines etc. to no avail.
I was wondering if you managed to find out what this issue for your son was called or any treatment? Anything conclusive?
Really appreciate if you get round to replying, I’ve never met anyone with the same symptoms as me and such a relief to find someone else experiencing this.
Many thanks, Mike
Hi there yes I am still on here reading more then posting👍. My sons condition has been called many things Cholinergic Urticaria/ idiopathic Urticaria is the one his Allergist/immunologist uses, and he is still seeing specialists for it maybe being something else like autonomic disease, but his skin symptoms only happen now once or twice a week. Xolair injections from his Allergist/immunologist once a month injections. He doesn’t take any antihistamine, none worked. He takes Ursodiol for his PSC 600mg a day, and Balsalazide disodium 750mg each 9 per day, I also added 100mg Tumeric twice a day, 1000 mg good fish oil, and 20mg twice a day CBD…I understand the frustrations, hang in there it took my son a while to stabilize and he did. There is still much to learn about the connection between the skin and the liver. One-day there will be a cure. Contact us anytime😊
Welcome back. Tmo8. glad your son is in a good place.