Hi, I was diagnosed with PBC 4 years ago and am a non-responder to Urso. I have taken Cholestryamine light, Gabapentin, Sertraline, Rifampicin, Fenofibrate and Naltrexone for my unbearable itching, with no relief.
I recently have taken part and finished a trial at QEH Birmingham for pruritus, called Glimmer by GSK. This made a slight difference, but nothing significant.
I go back to Birmingham in a few weeks to see what’s the next treatment that I can have. Slightly worried as a transplant was mentioned before the trial, and again recently. Has anyone tried anything else with success?
I am an itcher and take a cocktail of Rifampicin, Sertraline and Questran which has in part controlled the itch although I do resort to ice when it is bad.
Sorry to read that the Glimmer Study did not work for you, the only other treatment I have heard of but not experienced is Plasmapheresis.
One other contributor on here suffered with intractable itching and has since had a transplant, it would seem to be the last resort. Hope you find some resolution soon.
Hi, have you tried Dermacool 2%? It’s a menthol cream to moisturise and cool.
Hi I too suffer the horrible itch, so bad I’ve torn my legs. I was prescribed hydroxyzine which has a mild sedative to help with sleeping. I tend to itch more in bed so gave only had this 1 night so far. I did sleep better but woke up this morning with awful fatigue. Unsure if it’s the meds or normal fatigue. Jane x
A lady I know in my PBC group has a treatment that has stopped her itching. It’s something to do with cleaning your blood. I will message her and find out what the name of the treatment is.
I know this may not help with your itch, but as a non responder to urso, have you been offered obeticholic acid? This is licensed for use in PBC for non responders to urso and will at least help control liver enzymes like ALP and bilirubin which will help maintain your liver function.
Happy Sunday...Let me start by saying how terrible this dreaded itch can be. I have been fortunate that over the years, mine has come and gone. Haven't experienced it in a long while. But when it comes, all bets are off. I too am not able to use URSO. My itch always seems to come around 8pm and last at least 2 hours or more unless I intervene. I have faded scars on my arms and legs from scratching. Mine would get so bad that I was bleeding and crying, praying that the bewitching hour would somehow magically not come. I sought help through acupuncture at first. They said it was liver and always tried to balance my system. No relief. I went to the Western medical doctors who had no clue either. After much googling on natural remedies to relieve the condition, I found a simple way to calm it down. A cup of water, a teaspoon of baking soda, a teaspoon of lemon or lime juice, a little stevia. So, I drank this when the itch started and got some relief. Upon more research, I came across baking soda bathes. A cup of baking soda in a lukewarm, not hot bath, soak for 20 minutes and rinse. This helps some too. But I was hoping for something that would eliminate it, not just cover it up. I started realizing that the time periods when I had these "itching spells", were around times of major stress turmoil, and changes in my life. So, I had to reduce the stress. Also, I found that certain foods triggered the itching too. For about a year, I eliminated most foods accept for vegetables and a little brown rice. Not knowing if I truly had allergies, I began re-introducing them one at a time and am ok today.
So, I had to believe it was stress/anxiety for me. Not wanting to take a medication for this, I sought natural ways. At first, the only thing I found to relieve this state of mind was medical marijuana in capsule form. Just a little bit would take the edge off. Today I use CBD oil which relieves my anxiety, decreases inflammation. End result, I haven't itched in almost 2 years. I have to believe that for me, anxiety and stress are huge factors. Also, and maybe even as important, when the liver gets overloaded with too many unhealthy foods
(not judging, but what do you eat?), the toxins have to go somewhere...to the skin as a histamine, resulting in itching...that's why the alkalizing affects of baking soda, calamine lotion(in the fridge feel great), and doing different types of cleanses calm everything down.
I also practice yoga and meditation to soften my mind. I hope some of this is helpful to you. There are many threads on this forum regarding this issue. All you have to do is type your concern in the search box and you'll be amazed at how many of us have been dealing with this. Be well
Urso wasn’t bringing my counts down, so Ocaliva was added to the arsenal last year. My mild itching is more frequent, but my liver counts have gone down making the trade-off seem worth it.
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