Tuesday's Tip

[DonnaBoll]

I've read in Dr. Jones' book that often the use of light therapy has been shown to help patient's itching. It has been used for years in newborns to help break down neonatal jaundice. It's thought to break down the jaundice pigment in the skin.

The trick is the decide how much sunlight or light therapy should be used as it can obviously make some more prone to skin cancer. Formal light therapy has been used though on patients. The thought being that it breaks down the molecules causing the itch - possibly the bile acids.

They have seen patients whose itching is greatly helped when receiving their light therapy -only to have it return when they are 'taking a break' from it.

Have any of you found the sun helps the itching? I know for me if I was in the sun to the point of sweating, that almost always caused me to itch. So many of us really do experience PBC differently, don't we?

[chrisj]

Hi Donna.

I had a virus a few weeks ago that affected my liver and the itchiness that came with it was unbearable. I searched online for some help and read that a cool bath would help calm it down. I don't have a bath but I did get some antihistamines. It took the whole 3 week supply to reduce it.

Saw the doctor who had no idea what the virus was, 3 scans still didn't know so I'm due an appointment this month with hepatology and I'm hoping they will know more. My liver is recovering and the itching has mostly eased, just odd spasms now.

Your mention of bile acids is a first, I had no idea why it was so bad and the internet didn't help much either. I was quite poorly for 3-4 weeks but am much better now. So no sunshine from what I found, just the opposite. No sign of jaundice either just a nasty virus.

[DonnaBoll Administrator in reply to chrisj]

How horrible for you! and still no answers. I know all too well how life altering that itch can be. You feel like it consumes you..... trying not to scratch in public becomes a daily goal. Did you have other symptoms along with the itch when the virus was there? Not having answers makes it so frustrating.

[chrisj in reply to DonnaBoll]

I did. Dark coloured urine, loss of appetite I lost some weight, fatigue and generally feeling faint, unwell wanting to sleep all the time. Hoping to get some answers at the end of this month when I see the hepatology team. I need some reassurance that my liver is sound. They gave me no treatment at all I simply rested, was all I could do really xx

[DonnaBoll Administrator in reply to chrisj]

Do you get your liver enzymes checked before and after the virus? interested to see what your numbers are - when you went to the doctor what scans did they do? Sounds like maybe you need a good overall physical. Check it all out....

[chrisj in reply to DonnaBoll]

Ultra sound, CT and MRI scans, waiting for results of the MRI. She asked for that one as the other two weren't clear enough, she wanted more detail.

Phlebotomist has been today for a follow up of the bloods taken at the doctors when I wasn't feeling well. As soon as she saw me she said "you have a virus" even before I sat down but she had no idea what it was. Wiped me out for a while but I'm much better now.

I've no idea about numbers Donna I never ask. If enzymes are seen from blood tests then they will have been seen a few weeks ago and will be again from todays tests. I'm booked to see the "liver team" 26th of this month so I might learn more then.

[DonnaBoll Administrator in reply to chrisj]

It might reinforce that you are doing well if you do monitor your liver enzyme results. It really is important for us to be proactive in knowing how we are doing with this disease. If you belong to The PBC Foundation, they have a phone app that you can easily download that has a place to keep track of your numbers. At least try to keep track of your alk phos and bilirubin numbers. I hope you feel better.