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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Questions on ITCHING and how to help my daughter!


#1

I am begging for some help. I have read over and over that PSC causes crazy itching, but now when my 15 year old daughter is crying as she is itching so bad all over her body I am reaching out for answers from the people who know best.
1. What is the itching caused from?
2. Does it mean something is wrong or that we are at a new stage?
3. What can I do for her to help with the itching (the feeling helpless is ripping my heart out)?

She was diagnosed in 2010, and is on Azathioprine and Ursodiol for the PSC, Levothyroxine for Thyroid, and Lantus and Humalog for her Diabetes.


#2

Hi. My daughter (6) was just diagnosed with PSC. I am new to this, but I believe I have read that the that the itching is caused by bile salts building up under the skin. I know I have read that some people have been prescribed meds to help relieve the itching. I am sorry I do not have lots of info, but you can search the discussions for the topic of itching, and I am sure you will find a number of posts about it. Hopefully some others will be along soon who can answer you more directly.

I hope your daughter gets some relief!

Hilary


#3

It still isn't completely settled as to what causes cholestatic pruritus but the best guess is that it involves conjugated bilirubin backflowing into the bloodstream. Bilirubin are blood cells that are old and dead that are floating around in the blood stream. Normally this bilirubin travels to the liver, is processed (conjugated), and then passes through the liver and out of the body through the colon. When liver bile doesn't flow, like with PSC, the conjugated bilirubin gets stuck in the liver and can flow back into the blood stream. The theory is that this conjugated bilirubin contains bile salts, etc. from hanging out in the liver and that this extra stuff can make a person itch when it hits the blood stream.

Itching hints of cholestasis. Imaging is warranted if it hasn't been done in awhile. If there are obvious strictures, a doctor may decide to conduct a therapeutic ERCP to open them up and help to alleviate symptoms.

The effectiveness for each therapy varies individual to individual. Experiment and see what works for your daughter. Therapies include:

1) Diet. This probably won't work alone but is worth a shot. My experience: my itching was exacerbated by dietary fat. A low fat diet helped to reduce cholangitis episodes and the associated itching (although a low fat diet is something I would not recommend long-term). Results will likely vary; try to cut out different things and see if it works.

2) UVB. Phototherapy can help to reduce itching (this is what they use in the hospital for jaundiced babies). UVB is what you are looking for. Good sources include the sun and devices you can get via prescription. Commercial tanning booths are primarily UVA and will likely be less effective.

3) Antihistamines. Benadryl doesn't do much for the itching but will knock you out and help with sleep. Over time your body will get used to it and it will lose its effectiveness. Atarax is a more hardcore version that is often prescribed. Downsides are extreme drowsiness.

4) Antidepressants (Zoloft). I'm not sure why these work but people have reported them useful for eliminating pruritus.

5) Cholestyramine (Prevalite, Questran). This binds to bile acids in your gut so that they are passed through the colon rather than being recycled. This means less bile acids getting in the blood stream via conjugated bilirubin so theoretically less itching. It seems to be a 50-50 shot as to whether it works (I didn't have any success). Downsides: It is slightly more palatable than colonoscopy prep and can disrupt a number of other drugs so a lot of caution needs to be taken regarding dosing schedule around other meds.

6) Rifampin. This is a tuberculosis antibiotic. I'm not sure why it works but anecdotally it seems to work better than anything else for directly targeting and eliminating itching. Doctors are reluctant to prescribe because it raises LFTs for a small percentage of patients.

7) Oral Vancomycin. This is a broad spectrum antibiotic that won't do anything to directly target itching but has been effective at eliminating the inflammation caused by PSC, in turn opening the bile ducts and eliminating itching. This was the solution that worked for me.


#4

Thank you jtb for such a good list. I choose the first two on the list, diet and sun. I tried cholestyramine and benadryl, but they didn't work.

To the OP, I think you might consider increasing good fat in her diet, such as avocado. I put a good dollop with my poached eggs every morning. I eat the low fat version of everything else. (2% milk, 0% yogurt, No butter, always cook with oil.)

I also eat a lot of meat because the protein helps keep itching at bay. Also, I can't have any spices such as curry, cardamom, cumin, coriander....these will bring the devil's torment my way in the way of itching.
I use castor oil on my legs after bathing in cold water. This helps soothe, but also prevent itching, especially in our dry winters.

Also, right before my period, the itching can be worse, and then I just have to grin and bear it for one or two days.

I really hope you start a chart with all the influences you can think of, and the levels of itchiness she felt. Eventually, you will see patterns that are her own, and you will be of great assistance to her. You will be like Sherlock Holmes; wherever she goes, you will have your notebook handy, and be scribbling away. Also, if she has a day when she doesn't exercise, find out if she's less or more itchy. Good luck!!!


#5

KK, back in Feb, I went to my dermo who prescribed Mometasone. It worked like a charm. It is a steroid-based cream that you apply it then wrap it in saran wrap for a while.

I was having several spots on my shins that itched badly and after applying the cream, the itching dissipated by about 95% within a week. Since then, the spots I applied it to no longer itch, and the red patches have cleared.

Jeff


#6

jtb's last note about Vancomycin. Concur. My PSC recurred 2 yrs post transplant. The itching started right away with the rediagnosis. Vancomycin stopped the itching because it stopped the bile duct stricturing at the source. Its not a band aid solution, worth a try for all other aspects of the disease if you can get it.

while I had it, I lotioned liberally with calamine lotion for releaf, every night. the pink stuff for mosquito bites

e

RJM


#7

though I would re-emphasise since I didn't see CALAMINE LOTION on the suggestions from anyone. That is totally your solution in the short, and maybe long therm. I discovered it with mosquitoes of course, but we had it in the house after a recent experience with swimmers itch on the kids (poor kids it was miserable). totally works

rjm

rjm said:

jtb's last note about Vancomycin. Concur. My PSC recurred 2 yrs post transplant. The itching started right away with the rediagnosis. Vancomycin stopped the itching because it stopped the bile duct stricturing at the source. Its not a band aid solution, worth a try for all other aspects of the disease if you can get it.

while I had it, I lotioned liberally with calamine lotion for releaf, every night. the pink stuff for mosquito bites

e

RJM


#8

I have been prescribed an aqueous cream with 1% menthol which helps to cool the skin and does provide some relief. The one I have been given is Dermacool.


#9

Hello. I myself take thyroid hormone replacements just like your daughter, and bile salt replacement meds too. But I noticed you did not have any information about steroid creams. I think you should have your child be seen by a dermatologist and talk about eczema, as it could be the cause. I was diagnosed after my PSC started up, it took a while but it could be what's going on with her.

Born with thyroid condition 1989
late 2009 PSC starts
early 2011 diagnosed with PSC
summer 2012 UC flare and diagnosed
summer 2013 eczema starts, causes itchyness, burning night sweats, inability to sleep
winter 2013-early 2014 skin dehydrates and sheds often, diagnosis of eczema


If it is eczema, I hope you get your diagnosis before winter


#10



jtb said:

It still isn't completely settled as to what causes cholestatic pruritus but the best guess is that it involves conjugated bilirubin backflowing into the bloodstream. Bilirubin are blood cells that are old and dead that are floating around in the blood stream. Normally this bilirubin travels to the liver, is processed (conjugated), and then passes through the liver and out of the body through the colon. When liver bile doesn't flow, like with PSC, the conjugated bilirubin gets stuck in the liver and can flow back into the blood stream. The theory is that this conjugated bilirubin contains bile salts, etc. from hanging out in the liver and that this extra stuff can make a person itch when it hits the blood stream.

Itching hints of cholestasis. Imaging is warranted if it hasn't been done in awhile. If there are obvious strictures, a doctor may decide to conduct a therapeutic ERCP to open them up and help to alleviate symptoms.

The effectiveness for each therapy varies individual to individual. Experiment and see what works for your daughter. Therapies include:

1) Diet. This probably won't work alone but is worth a shot. My experience: my itching was exacerbated by dietary fat. A low fat diet helped to reduce cholangitis episodes and the associated itching (although a low fat diet is something I would not recommend long-term). Results will likely vary; try to cut out different things and see if it works.

2) UVB. Phototherapy can help to reduce itching (this is what they use in the hospital for jaundiced babies). UVB is what you are looking for. Good sources include the sun and devices you can get via prescription. Commercial tanning booths are primarily UVA and will likely be less effective.

3) Antihistamines. Benadryl doesn't do much for the itching but will knock you out and help with sleep. Over time your body will get used to it and it will lose its effectiveness. Atarax is a more hardcore version that is often prescribed. Downsides are extreme drowsiness.

4) Antidepressants (Zoloft). I'm not sure why these work but people have reported them useful for eliminating pruritus.

5) Cholestyramine (Prevalite, Questran). This binds to bile acids in your gut so that they are passed through the colon rather than being recycled. This means less bile acids getting in the blood stream via conjugated bilirubin so theoretically less itching. It seems to be a 50-50 shot as to whether it works (I didn't have any success). Downsides: It is slightly more palatable than colonoscopy prep and can disrupt a number of other drugs so a lot of caution needs to be taken regarding dosing schedule around other meds.

6) Rifampin. This is a tuberculosis antibiotic. I'm not sure why it works but anecdotally it seems to work better than anything else for directly targeting and eliminating itching. Doctors are reluctant to prescribe because it raises LFTs for a small percentage of patients.

7) Oral Vancomycin. This is a broad spectrum antibiotic that won't do anything to directly target itching but has been effective at eliminating the inflammation caused by PSC, in turn opening the bile ducts and eliminating itching. This was the solution that worked for me.


#11

Great advice above!!!! You pretty much covered all the bases.

I find that when I'm not careful about the fatty foods and is definitely worse, and certain things like caffeine and chocolate make it worse for ME. Any drink with bubbles/seltzer makes me itch too. During intense bouts I run ice cold water over my feet and hands (worse areas) or rub an ice cube. I could be a poster child for band-aids!!! I have yet to find a lotion that helps, sometimes I actually feel it can make it worse especially if scented. Instead of a tanning bed maybe an infrared sauna.....

For those of you who don't have PSC the itching is probably one of the worse side effects....it can drive you crazy :( I've sat in tubs of cold water crying to make it stop....SUCKS!


#12

The itching is caused from bile acids accumulating in the blood stream, due to problems with the bile ducts in PSC since everything gets backed up; it has no where to go.

I experienced HORRIBLE itching all over my body, especially on the palms of my hands, feet, legs, and abdomen. It went on for months and I would wake up every single night itching until I bled and also developed horrible scratches and bruises because of it. When I was hospitalized they would give me benadryl to relieve me of my itching, but that just resulted in me sleeping for a few hours and then wake up itching again. I've heard excellent things about Rifampin to control the itching.

During the time I was itching so badly I made sure to keep my finger nails as short and dull as I could so I wouldn't open up old itching wounds or cause new ones because now I have scars all over my legs from it.

Hopefully this bad itching is a phase of the disease, mine usually comes and goes. I'm sorry I don't have much advice to help your daughter, but hopefully she can feel somewhat relieved that she isn't alone. I am 18 and know exactly what she is going through. A big thing I can say is to keep your nails really short, that helped me a lot when I experienced the itching. And when she does start itching badly I would go see a doctor immediately and get labs taken because it could be a spike in her bilirubin levels.


#13

KK,

I'm sorry your daughter is suffering so much from the intense itching. You have received many very good responses so I will not go over the same material. I will tell you what helped me. Ask her doctor about prescribing Rifampin. I took 300 MG twice a day and it basically eliminated the itching. I took it for 4 years from my diagnosis till the day of my transplant in July and really had very little problems with it. I did try several times to back off to 1 a day or even skip days, but the itching would eventually come back with a vengeance. The biggest side-effect from the medication is that it turns your urine orange and can come out tear ducts although I never had that particular issue. But it was well worth that little trouble to finally get relief. I wish her well.

Mark

PSC 2011 / Liver-Transplant 7-2015


#14

It’s been a while since I’ve last posted on this forum but I need to start again. 2015 has been one hell of a year, and I just got diagnosed with cirrhosis like 20 minutes ago via MRCP. My last blood tests have shown normal bilirubin levels, but my itch is relentless, to the point that I’m on sleep aid meds (that don’t help all the time).

Anyways, now that I got that off my chest, time for the question: Normal bili levels with intense itch? Why and how?


#15

Nomad2040,

Sorry to hear you have been giving the cirrhosis diagnosis. Regarding your intense itching, I tried just about everything to relieve my itching. The only thing I found to work is a prescription medication called Rifampin. Ask your doctor about prescribing 300 mg twice a day. That should greatly bring relief to you. I took it for 4 years before my transplant with no issues.

The intense itch is due to the bile salts in your skin. With the PSC blocking your bile ducts most of the way the bile salts are being forced into the skin instead of being flushed out through the gut. Are you on Ursodiol? This will help to thin the bile so that it can flow better through those clogged up bile ducts. You may need to ask about getting an ERCP done. That will usually bring some temporary relief.

Are you under the care of a hepatologist or a GI doctor? If the answer is GI, I would strongly recommend you find a hepatologist at a hospital that does transplants near your home. This is very important as they are highly trained to deal with liver diseases such as PSC. Please feel free to ask any other questions and we will do our best to help.


Mark Wilson, Moderator

PSC 2011 / Liver Transplant 7-2015


#16

Thanks for the reply, fcmmark. So what your saying is those bile salts are still there even though the normal bili levels (as far as I know) mean that my liver is draining correctly? I’m currently being worked up for transplant (they were worried about sepsis and had been waiting to get me admitted for my next infection to put an indication for transplant, but I guess this new diagnosis makes things a bit easier) and I have my first appointment with my surgeon in Florida Hospital Orlando. My GI is a specialist when it comes to PSC and we are both working on figuring out how to tackle the itch.

I’ve tried Rifampin with little luck (though not at a dose as high as yours was I think), tried cholestyramine, hydroxyzine, that opioid antagonist (i forget the name) which actually worsened the itch to the utter shock of my GI, and doxepin. I’ve been taking Urso for years as well. I think the last thing on the list is some other antidepressant, which I guess is fine because at times the itch is starting to cause cracks on my positivity.


#17

Oh, and my skin. Lots of cracks on my skin. =D


#18

What about ERCP? Have you had one of those lately? It may be that although your bilirubin levels are normal, that if you still may have some blockages. I realize that may not make sense and I may be way off base. Itching for me was always bilirubin related. What about your eyes. Are they normal or orange, brown, etc. colored indicating elevated bilirubin?

I hope your transplant listing goes well. You just cannot imagine how well you will feel when you wake up in that ICU with a new liver. It's just a feeling you can hardly explain. You'd think the large incision would be a big painful deal, but really I had more pain with a tooth infection post transplant than I did the incisions from my transplant. All those nerves are cut when they do the transplant so that everything is pretty much numb down there.

Keep in touch.

Mark

PSC 2011 / Liver Transplant 7-2015


#19

Well the GI nurse said that the ducts look good from my last ERCP (back in September, ended up spending 9 days in the ICU for pancreatitis and lipase enzyme off the charts at above 3000 with the worst pain in my life bar none) that I won't need another one. Now I don't have the MRCP results from last Monday that mention cirrhosis, but my earlier November one (was admitted then for possible infection) says this (copy-paste from patient portal):

1. Changes of mild PSC within the liver. Overall, the ductal dilatation has improved when compared to June. The common bile duct is normal. 2. Mild splenomegaly. 3. Pancreatitis has resolved. 4. Possible mild thickening versus nondistention in the cecum.

I was told I don't need another ERCP done with my latest one but I'll get more info when I see my GI on tuesday. I totally agree on your idea that it might be other blockages, though. Everything else is normal. You could walk right by me and have no idea I was sick. You'd more likely think I was an addict because of the scratching. My last blood test was two weeks ago and my bili was at 1.3, which they consider normal.

By the way, now that you speak about your transplant, I'm really happy to see how great you're doing. It honestly makes me feel chill about it all. Good to know that the pain levels are pretty much null. I'm actually kinda happy now that the doctors have an indication to work with, instead of "lets wait until he gets and infection, and hope the cultures come out positive".


#20

One additional question. You keep mentioning your GI doctor. Have you been seen by a Hepatologist yet? If not, I would "strongly, urgently, seriously" (you get the point) make an appointment with one as soon as possible. The hepatologist is much more skilled in the treatment of liver disease than your usual GI doctor will be. I have heard of one GI doctor that have studied PSC but that was only in one case that I know of so far. The ERCP procedure is a very invasive procedure and really should be done by an doctor that does these just about every day. I would really be leary of allowing a GI doctor to do the procedure on me. That may be one reason you ended up with pancreatitis. You can find a hepatologist at a major hospital that does liver transplants. He or she will be the one meeting with you on a regular basis, running extensive labs from time to time, etc. As your disease progresses you need to be in a position to step right over to the next step of transplant evaluation and by being with this specialist I have mentioned, he works very closely with the transplant team and is a part of it. They use a multi-disciplinary approach to the treatment of the patient, so you have a whole team of folks discussing your case even before you are listed for transplant. I hope this helps.

Mark Wilson

PSC 2011 / Liver Transplant 7-2015