Itching Driving Me Crazy: Hello Everyone... - PBC Foundation

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Itching Driving Me Crazy

Y-now profile image
Y-now

Hello Everyone.

Sorry I haven't been around in a while. I have been itchy to the extreme. The back of my head is the worse but it is also top of 1 foot, hips, low back and lady parts. I scratch like a dog infested with fleas. Once i start scratching a red rash small raised bumps appears. My family Dr referred me to see my gyno and a dermatologist. Nov 15th I booked a second opinion appt with Mount Sinai Hospital Liver specialists in New York. They have a team including: heptologist, dermatologist, psychiatrist, rheumatologist, nutritionist and support groups.

My alkPhos was down below 180 sept 8 from over 600 in july then sept 21 it was going back up over 240. And I have been feeling worse. With very little info from my current heptologist.

Anyone with thoughts?

8 Replies

Hi Y-now

My most recent ALK was on 137 but I still itch even with medication. I hope you get some answers.

best wishes

I had two bouts of scratching, rash, bumps, scratching bumps and scaring. It was crazy. I took a sanding block and sanded the bumps. BTW I highly don't recommend that, it is just a visual of how tough it can get. My crazy itching was set off by Ocaliva initial dosing and then again when I went from 5mg to 10mg daily. My doc told me it wasn't the Ocaliva or PBC and is referring me to a derm doc. I beg to differ but will go see the derm. Both bouts of itching subsided on their own and now I scratch a little but not enough to bother me. I was wondering what med you were on for your PBC? or if you have had any other med changes recently?

Kathy in Colorado

Y-now profile image
Y-now in reply to Q8Cooper

Sounds like me, i actually used a nail file(sandpaper) a couple times. I take 900mg of ursodiol.

But there hasnt been any med changes to have atarted this. Although my alkPhos did start increasing again. My primary Dr referred me to see a dermatologist. But pbc makes more sense.

Thank you. I will let you know when i find out.

Q8Cooper profile image
Q8Cooper in reply to Y-now

I know it is crazy. Intuitively I know the itch is related to PBC and I thought mine might be related to dose changes in Ocaliva, but my doc said the itching doesn't present the way I described. So I will post too when I see the derm doc. The following will sound nuts and it is, because sometimes this itch phase is not just itchy skin - sometimes episodes can drive you to do anything to relieve it. So I am posting;

Why not to sand your skin - first the friction will give relief, then the heated skin will hurt and itch. You can give yourself road rash.

Why not to scrape your skin with a sharp object. If you get bumps like I did you might be tempted. I would scrape across them kind of like one would do shaving your legs. I would remove what appeared to be white powdery dead skin cells. The skin looked nicer and felt smooth afterwards. DO NOT TRY THIS AT HOME! :) you will end up scaring your skin.

I realize that no one in their rational mind would do this. But in the absence of anything stopping an episode of crazy itching we can be tempted to do anything to stop it. Keep telling your doctors about itching.

Don't mean to pound. Just want to save anyone new to this type of itching from accidently harm.

Good Luck!

Rockie profile image
Rockie in reply to Q8Cooper

For me the itch has a lot to do with my diet. My liver counts are the lowest in 8 years but itching is only better if I go completely gluten free,no fatty foods.

donna01 profile image
donna01 in reply to Rockie

Rockie- I too went gluten free. I noticed if I even eat the slightest bit of gluten or Milk products for that matter, I get the itching thing. Mine is arms, legs and back. It is enough to make you want to jump out of a window!

I can only sympathy with you as I do know what ITCH means. Terrible just terrible

Donna01 I know I should try and give up milk products as well. because I still itch, some times it is bearable.I call them my periods now, because it builds up to a stage where you convinced you are going crazy with this itch. After getting rid of bile by running to the bathroom for several times a day, it is bearable. I am just so blessed that this only got so bad the last 8 years and I am nearly 77. So I should not really complain. So many young people struggle with this itch. What I also cannot understand is my liver enzymes readings are looking better than in years. Bless you

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