I've had unexplained itching for well over a year that, at the beginning, was very intermittent, but almost daily the last 5-6 months. I was just diagnosed with PBC in January of this year. I was prescribed cholestyramine powder but was unable to time my doses between thyroid meds and URSO so I never started taking it. Instead, I will use benadryl or hydroxyzine when the hydrocortisone or ice packs don't give me the relief I need. These make me very sleepy but at least do the trick. Sometimes, I'll jump in the pool as this works almost immediately.
I am a part time nanny for 5 children, ages 3 to 9. I was off for 2 weeks in a row and stopped itching at the start of week 2. It was total bliss! However, today was my first day back and I am back to itching again.😫 I had to jump in the pool as soon as I got home and I'm itching as I'm typing this.
I've read the itching is more of a nerve issue. Could it be affected by cortisol levels too? Does anyone else notice an increase in itching when their stress levels are higher? What other medications are out there that don't cause so much sleepiness? I can't care for kids or my family if all I want to do is sleep.
Thanks in advance for your input
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Godsdaughter70
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I am sorry to read that you are experiencing the itch of PBC. Yes when my stress levels are high the itching can break through my medication. I have a cocktail of prescription drugs which has been tweeked over the years until more recently I have settled on a better balance.
I also was prescribed cholestyramine but a couple of years ago it was out of stock with some pharmacies so I changed to colestagel which is a tablet form. During the pandemic I was unable to source either and the itch started to resurface even though I was taking Rifampicin 300mg twice a day with 50mg sertraline. I have also recently discovered a vitamin which you may find in the USA is Heptral also known as S-Adenosyl methionine (SAMe) is being used by many eastern european countries very successfully against the itch. Research papers are available if you want to Google or if you go to the PBC Foundation's Facebook page and look for the Q&A on 30 June with Prof. Jones about 17 or 18 minutes into the session Professor Jones talks about the use of SAMe.
However all of that preamble my current dosing for the so called itch of PBC is Rifampicin, Sertraline (mg as stated above) and Gabapentin at 300mg twice a day. I am about to introduce SAMe in the hope of reducing some of the prescription drugs with the approval of my specialist.
I’m sorry you are having to deal with the itch returning 🙁 I have also noticed a correlation between stress and itching coming back or being worse, but I don’t think I’ve experienced it as badly and I haven’t had prescription meds for it.
About 2 months back I embarked on an anti-candida diet. Something about this diet seems to have mostly gotten rid of the itch which is now only very mild and occasional, while also very much reducing fatigue and brain fog. I’m not sure of the mechanism in relation to the reduced itching but imagine it’s to do with reduction in an inflammatory response. I’m about to do some microbiome testing which will hopefully shed more light on how gut issues may be affecting PBC symptoms. I just thought I’d mention it in case there’s a dietary approach which might help, which might not necessarily be the same approach I’m doing, but you could try experimenting. I know some people here have been helped by the autoimmune protocol diet.
Hi, Godsdaughter70-- so sorry to hear of your itching trials! Before my PBC diagnosis, mild itching attributed to skin allergies (and I have a history of allergies) responded well to low-dose Doxepin --at night, because it does cause sleepiness. That was ok because of my sleep issues from fibromyalgia. Two years ago, soles of my feet started with the itch-pain attacks. Ultimately, I saw a hepatologist in Dallas who put me on Rifampin, which has quelled 90% of those episodes. But! Stress definitely can lead to breakthrough itching, along with not taking as instructed. I also take many supplements, including probiotics. An intrigued by benefits reported by those on diets to combat inflammation. Hope this helps. Best of luck finding treatment that works for you.
HiI’m sorry you are suffering with the itching. I’m on the same meds as you, including thyroxine. Pls try and take the powder- I managed it with the medication. It really works well. Once the URSO kicked in - my itching stopped. I hope it’s the same for you. X
Hi Godsdaughter70, I too have suffered through atrocious itch literally going months on minimal sleep because if it. There are some great recommendations fir different medicines listed below I have tried most with little relief. I have found an amazing body wash by Eucerin called skin calming body wash. It is amazing! I take a shower with regular body wash then wash with this soap, it calms my skin so I can relax. I wash with regular body wash first because the Eucerin can feel a little oily. I was taking Sertraline 76 MG but have recently stopped after finding out it can cause microscopic colitis in people with immune issues. I hope this helps you too.
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