Itching 😡

[Pamela4475]

Hey guys..... can you still have itching with urso and normal labs? I was itching free for several months and labs are within normal range for a few months but now have the itching again 😞

[Frances61]

I am itching like crazy and it is driving me mad. Been on urso for a couple of years. LTT’s normal. Why am I itching. Can it be the URSO causing the itch. I never had any itching before I started taking urso.

[Pamela4475 in reply to Frances61]

We are in a he same boat.... it’s only on my forearms.... where are you itching? Will let you know what md says once I see him at end of month

[Frances61 in reply to Pamela4475]

Yes it’s my forearms. It’s been really bad recently. I have bumps all over my upper arm and skin feels very hot. I have emailed my hepatologist some photos.

[Pamela4475 in reply to Frances61]

Mine is firearms also

[Pamela4475 in reply to Frances61]

Let me know what your doc says

[Q8Cooper in reply to Frances61]

I get this. Started in my forearms little bumps and all. Over the years the bumps have moved to my legs and now moving to my core body. Ice or cooling packs helps keep the inflamation down and reduces the rate of bump formation. (for me). Good luck and hang in there!

[chipsetter in reply to Pamela4475]

I too am itching terrible on my forearms..actually has caused white colored scarring

[Pamela4475 in reply to Frances61]

I stopped itching once I started urso just this past May labs were abnormal before

[Rockie]

Pamela4475 Itch I have accepted as part of my life now. My counts have come down a lot but still itch. Sometimes it is really bad and somedays it is bearable. I have just accepted this is part of my life

[Pamela4475 in reply to Rockie]

Thanks Rockie..I thought I was medically falling apart and going mad at the same time

[Wingepr in reply to Rockie]

Same here

[Pamela4475 in reply to Wingepr]

Glad not to be alone but sorry we are in this boat

[Frances61 in reply to Rockie]

So what is causing the itch. Is it the Urso?

[shaza1966 in reply to Rockie]

Hi there please go see your liver doctor and tell him that your itch is bad . I have had all sorts of different medication to stop the itch. I am currently on Rifampicin which takes the itch away it's been fantastic . I used freezer packs on my body before to help with the itch and found some relief but not for long . Liver doctor says if the Rifampicin stops working with me there is other medications for me to try . Please don't suffer

[Rockie in reply to shaza1966]

Shaza1966. I was prescribed Rifampicin but refused to drink it. It is normally prescribed for people with TB and is a long term antibiotic. I will rather scratch and keep on watching my diet. I get my better days.

[Pamela4475 in reply to shaza1966]

Thanks for the info

[Rockie]

Also important is your diet. No fats, alcohol and for me no Gluten

[Pamela4475 in reply to Rockie]

Thanks Rockie

[butterflyEi]

Hi Pamela4475

I was itching about 1996 and then it stopped. Was diagnosed 2004 and started URSO and remained symptom free until a stressful event triggered the so called itch of PBC. My labs have always been quite good. The last print out I have shows an ALK 137 <30-130> with bilirubin at 8 <3-20>. Other results are all just a few points above normal. I have learned that the "itch" is not associated with the state of the liver. The GP tried various treatments within their scope without success and I was eventually referred to a specialist who thankfully is a wonderful person with a caring attitude. Slowly medication was introduced to control the itching - I started with cholestyramine, 2 sachets in the morning either side of breakfast, when that did not control the "itch" naltrexone was added but I did not tolerate that so I was prescribed rifampicin. These two medications made a huge difference but did not rid me of it. Sertraline has been added to the mix of which I take 25mg but can take the whole tablet if I need to.

I do not like taking all this medication but even with a change to a super healthy diet (mostly vegetarian) very little sugar and fat, certainly no fizzy drinks such as cola or lemonade, with the exception of a few celebratory glasses of wine no alcohol I can still feel the itch underlying during the day and definitely makes its self known at night when I use a 2% menthol cream to confuse the skin long enough for me to get to sleep.

I hope the new study on the itch (I think it is called the glimmer study) will find one tablet to help those who suffer with the so called itch of PBC.

best wishes

[Pamela4475 in reply to butterflyEi]

Thanks so much for the info

[donna01 in reply to butterflyEi]

Hi ButterflyEi-

My gastro states that the itching is caused by overflow of bile, escaping into the bloodstream due to the bile ducts not moving it out properly or just no longer working at all. I often wondered if it were the condition of the liver......

[Frances61 in reply to butterflyEi]

Thanks for your post. The one burning (excuse the pun) question I have is WHAT causes the itch.

My itching only started once I started taking the Urso.

[butterflyEi in reply to Frances61]

Hi Frances61

Unfortunately the professionals do not know what causes the itch but there is research on going at the moment. It is known that one liver problem symtom is itching so it is not just a PBC problem although of course one of the symptoms of PBC is the so called itch of PBC. It may be coincidental that the itch started around the time of taking URSO as I said in my response to Pamela I was itch free for years even though I was taking ursodeoxycholic acid. You may find that the doctor will start you on antihistamines to see if that will block your itch (for quite some time I was taking cetirizine) but for some the itch becomes intractable (I think that is the word to describe it).

I am sorry that you are suffering with the itch and I can totally empathize with the frustration of dealing with it.

I hope you find a way through

best wishes

[Rockie in reply to Frances61]

Frances61. It is the bile ducts that get inflamed

that causes the ITCH

[Rockie in reply to butterflyEi]

ButterflyE1. I do not take medication for the itch as it will put unnecessary stress on liver. So I try and eat right but it is not always working. After so many years I had to come to terms with this suffering. Luckily I do not often suffer from fatigue, for which I am extremely thankful

[Frances61 in reply to butterflyEi]

Hi there. Do you know if the study has been completed. Are there any new medications for the itch? How is yours?

[butterflyEi in reply to Frances61]

If I remember correctly from one of the PBC Foundation's Thursday sessions with professionals the study was temporarily halted but I cannot remember why but I would guess this pandemic. There is a session this afternoon 2 p.m. UK time which can be accessed either on Facebook or through the click meeting - link on the PBC Foundation's web site where you can ask your question directly. If your time zone does not fit in send an email to the Foundation, they will ask the question for you and you can then listen on catch up at a time convenient to you. Hope this reaches you in time.

[Frances61 in reply to butterflyEi]

That is very helpful. Thank you. 👍

[butterflyEi]

hi donna01

Yes I have also understood from the professionals that the bile escapes and finds its way onto the skin through bloods because our bile ducts are not functioning properly. Whatever the reason it is a pain in the you know where or worse!

[donna01 in reply to butterflyEi]

Absolutely! Doesn't it make you terrified to eat?

[butterflyEi in reply to donna01]

No donna01 I like my food too much

I am more scared of stress which seems to impact on me more

[Rockie in reply to butterflyEi]

Yes stress is a big plus factor for the itch to flair up

[Rockie in reply to Rockie]

sorry flare not flair

[Pamela4475 in reply to butterflyEi]

Lol.... agree

[teddybear7]

Yes I'm all responding & good bloods. I go for ages with no itch then it comes back with a vengeance. Then goes again. All part of it they tell me. Up & down.

[Yankeerose3]

I been on urso for a few years. It brought my labs to normal but now I'm itching and joints are starting it hurt more and more

[Yankeerose3 in reply to Yankeerose3]

Dr put me on cholestyramine 1/2 pack twice a day but wants me to be tested for allergies. Also, requested full ultrasound to see if there are other issues for the pain. Feels like, since blood work is all normal, he don't think pbc is the cause. I don't understand since it's known to cause itching