PBC itching between toes and fingers

[mrsreddave]

hi everyone…any natural remedies for this horrendous itching us PBCers get in hands and feet. It’s becoming in bearable in between my toes and fingers, and I’ve given myself blisters on my feet from itching. Nothing can soothe the itch. I was given rifampicin bur had a bad reaction to it! I suffer with itching all over my body but feet and hands defo the worst. It’s really depressing!

[iagra]

So sorry about your suffering! I don't have any advice, but, hope others do. Will be following their comments as well. Best wishes to you!

[butterflyEi]

Hi mrsreddave , I am an itcher since about 2014. Over that period I have been prescribed Colestyramine (dreadful powder like wall paper paste), Cholestagel, Naltrexone (which made me very aggressive), Rifampicin, Sertraline (which is an antidepressant but seems to help calming the itch), Cetirizine (which is just an antihistamine), Gabapentin. I also have a menthol cream and have used vaseline in my ears.

My current itch medication is a bit of a mixture which has evolved since the onset of the itch and changed during the pandemic when I was unable to get certain medications. I take one 300mg Rifampicin, 25mg Sertraline, 2 X 300mg Gabapentin

and

I have also added (with specialist knowledge) s-Adenosyl-Methionine (SAMe) and take a probiotic with multivitamins, I use a vitamin D+K spray.

Here is a link to the description of SAMe

nccih.nih.gov/health/sadeno...

For me the trial and error has brought some peace, I still get breakthrough every now and then. I am sorry that the Rifampicin did not help you, perhaps your specialist/primary carer can work with you to find a concoction that works for you.

Professor David Jones has a second edition of his book out on Amazon (make sure to get the 2nd edition if you decide to buy)

amazon.co.uk/PBC-Definitive...

The PBC Foundation have a helpline should you want extra help, also there is a Q&A usually on a Thursday where you can ask questions of a specialist. All details can be found on their web page.

I hope something in the above will help you, the misery that comes with the so called itch of PBC is life altering. However please do consult your specialist/primary carer who will know your particular case best before trying different medications. best wishes

[mrsreddave in reply to butterflyEi]

Thank you so much. This is really useful!

[tamarjaybird]

I keep an ice pack filled with water in the fridge. My foot itches mostly at night and to rest it on the ice pack is the only relief. It is annoying and keeps me awake at night. I sometimes need the ice pack in the evenings too. I have been prescribed E45 itch cream but didn't find it helped much. Aloe Vera cream sometimes helps.

[mrsreddave in reply to tamarjaybird]

yep…I’m a fan of cold wet flannels at the moment. It’s just a ridiculous thing to have to do at night when watching the tv!

[Larrysgirl]

I'm sorry for the craziness this is causing you. I had the itching all over my body so severe it was causing me to create open scratched sores everywhere. I was only able to get a couple of hours of sleep a night. I went through all the meds the Dr. suggested and finally landed on 25mg Sertraline. I wasn't very hopeful since nothing else worked. I was like a miracle. Been itch free and sleeping like a baby since. I hope you find relief soon.

I'll be praying

God bless, Anni

[gillrich]

Ask your consultant or the pbc foundation about various research trial drugs for pbc itch xx

[Braveheart65]

Hi, I don’t have PBC but after the transplant suffered continual bile duct blockage & stone formation. They tried stenting by ERCP but after 16 mths I had a bile duct reconstruction. I tell you this as a background as to why I developed itching. It was so bad I scratched till I bled, see pic below. Nothing worked until they tried cholestyramine 4g sachets. They worked great for a while but as I was waiting such a long time for the reconstruction surgery due to COVID delays, I had to increase doses. The downside is terrible constipation but I also took a laxative powder at the same time. I wanted to kill myself the itching was that bad. Thankfully after reconstructive surgery I rarely itch but when I feel it starting (usually hands & feet) I take another dose of cholestyramine.

Results of scratching

[mrsreddave in reply to Braveheart65]

oh my! That is much more severe than I have and I’m glad you got sorted!