Itching Advice!

Hi everyone, I am new to this group. I was diagnosed in 2012 and have had no significant symptoms until recently. I have an intense itch all over my body that has left scabs and scars everywhere. I’m getting married in July and dreading putting on my wedding dress now.

I’ve tried light therapy, cholestyramine 4g 20 minutes before each meal, rifampin, fenofibrate, zoloft and nothing seems to help. I’ve been on ursodiol since being diagnosed.

I went to my dermatologist and he recommended an anti-hystamine regimen including allegra, singulair, and zyrtek. Has anyone else tried a regimen like this?

My GI wants to me to try the cholestyramine again doubling the dose to 8g three time a day.

Looking for some relief to this terrible disease!!!

Hello wrighta8,
Thanks for your post. Sorry you are having such an issue with itching. That is a battle for most of our PSC patients. You mentioned your GI doctor. Are you under the care of a hepatologist associated with a major transplant hospital? The reason I ask, I was diagnosed in 2011 and transplanted in 2015. I hope they are keeping an eye on your ducts with MRCP and ERCP to keep you abreast of the stage of your disease. You need to be seeing your hepatologist at least twice a year, and then more if symptoms get worse. I’d run anything new any of the doctors you are wanting you to try for itching by your hepatologist first. You don’t need anything more to damage your already diseased liver. Please feel free to post anytime. I’m sure others on this group will have some ideas to share as well. And once again, a very warm welcome.

PSC 2011 / Liver Transplant 2015

Hello wrighta8
No personal advice at this point, but wanted to wish you a hearty Welcome. I was diagnosed Jan. 2018 and landing here has already helped immensely in just keeping perspective.
So Welcome and I’m sorry you are so uncomfortable!
Best and congrats on wedding!!!

Hello wrighta8, welcome! I haven’t had a lot of itching, except for one night when I couldn’t get to sleep and itched from my head to my toes and it drove me nuts. My doctor prescribed Atarax and when I start itching it seems to do the trick for now. Also, to not break the skin, I’ve read recommendations of purchasing a long handled dish or back bathing brush for scratching instead of using fingernails. Hope this helps with your upcoming nuptials! Congratulations!

hydroxiyzine and rifampin have solved my itching problems completely. I hope you can find the right combination of meds to solve your itching.

Have you checked the other posts about itching? If you were doing an experiment, you would, of course, add only one thing at a time. But in this case, you need relief, so you should try many things at once, and maybe subtract later. I don’t mean medications. I just mean other things that can help.

For instance, did the itching just start recently? What else could be related? Go through a list like: amount of sleep (you may need more), time of the month ( the worst for me is right before my period), time spent in the sun (get some sun everyday), nervousness, winter dryness (be careful of over showering in the dry winter), overwork (give your body regular breaks), spices (I would try eliminating these if I were you. Cumin, cardamom, curry powder, chili peppers, jalapeño peppers are all taboo for me), anything unusual in your pattern. All these things can make things worse. And can you exercise more? This will help with the stress, but also with sleeping through the night. The worst itching can be 4 am to 6 am according to my hepatologist.

Also, are you eating enough fat? Try avocados every day. My own theory is to eat something with olive oil every day or two. Our illness means not eating high fat foods but we still need fat in our diet.

You may be panicking now, but remember things won’t necessarily stay the same, nor will they necessarily get worse. I’ve had a ton of itchiness at times, and now for a long time, far less itching. So do everything you can think of to improve things without medications too.

If you’re not regular, this can make things far worse. For instance, bran cereal before bed can help. Remember, there is a strong connection to the bowel with PSC so aim for short transit times. Coffee in the morning is highly advised. My hepatologist started me on coffee, and it really helps in many ways. He had read a study about it for PSC’ers. So I drink two cups every morning.

Itching has been my battle too. It is hard for anyone who has not dealt with it to understand the disabling impact it has.

Cholestyramine helped me and adjusting the does (both frequency and amount) does have impact. I’m currently trying 4g three times daily. The downside is that it also reduces my appetite. Antihistamines have been useless with regard to itch relief but they have helped me sleep.

One other thing that has helped me is soaking in hot thermal pools. I know people have had different responses to temperature changes but I can recommend trying it. It is the best I have felt since my diagnosis.