Itch scratch itch more: Guys this itch is... - PBC Foundation

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Itch scratch itch more

Carrickgal profile image
15 Replies

Guys this itch is driving me crazy I don't know how much longer I can carry on. GI has given me Questan and Rifampicin but more meds, more side effects. Years and years I've been plagued with itch despite only being diagnosed in October last year. Any natural remedies? Though I'm sure I've tried everything. Thoughts on homeopathy? Desperate. Itchy. Insomniac.

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Carrickgal profile image
Carrickgal
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15 Replies
jjones78 profile image
jjones78

Hi, I am so sorry you are suffering with the horrible itch. How long have you been taking Question and Rifampicin?

I had severe itching and I actually found that the itching got worse once I started on Urso in November 2017 and my consultant told me that this is common. I started taking Questran and it didn't really help much and then started Rifampicin last June when I showed my consultant saw that I was covered in cuts and bruises from the itching. I started on 150mg and then went up to 300mg per day. It took a while but it has really helped with the itching.

I know it is difficult taking all the medications and dealing with the different side effects but I remember my consultant assuring me that there are other medications they can try for the itching and that he would sort it out. The itching can seriously affect your quality of life and I understand how desperate you can feel but keep at it and your consultant will hopefully find something that works for you and you will get some relief eventually.

Carrickgal profile image
Carrickgal in reply to jjones78

Thank you jjones I'll stick with it. Consultant said takes a while to work. Its all so difficult. Think I was just feeling really sorry for myself last night I needed a wee moan. Thank you so much for replying and to know there is hope :-)

Kate50 profile image
Kate50 in reply to Carrickgal

Hi carrickgal, first total sympathy for the dreaded itch I know exactly how you feel and I’m sorry I don’t have any solution for you, but I found menthol cream gave me some temporary relief, and also aloe Vera gel kept in the fridge, again just works short term but gives a little relief, take care 🌸

Carrickgal profile image
Carrickgal in reply to Kate50

Thank you Kate yes I've tried every cream lotion and potion, made up bottles of this and that and spent a fortune nevermind the smell 🤢. I love that I'm not so alone now. Oatmeal bath wasn't bad and very natural 🌷🌷

Rainbow3210 profile image
Rainbow3210 in reply to Carrickgal

Keep a good few ice packs around and dot them round itchy areas to help stop creating inflammation x

Bjsm profile image
Bjsm

I just joined healthunlocked and saw 'itching' and PBC! Ive had the insane itching for 10+ years and completely understand how you feel and how much $ on over the counter stuff we've spent. I had 1 'breakout' lasting over a year - not a day went by when i didn't smell blood (sorry too much info). I'm taking Ursodiol, cholestramine powder . my current self treatment is: Sarna sensitive fragrance free lotion used after i rub 2 ice cubes on rash; at night i use ice then clobetasol Propoinate ointment. My rash starts on hands and the ice/ointment plus use disposable gloves after ointment is amazing - gloves at bedtime helps from scratching in my sleep (i cut nails but i scratch so hard i bruise). I found out about Sarna on a facebook blog for Liver and/or PBC. had good luck with Hawaiian Moon Aloe that i keep in fridge. I take anti depressant (welbutrin) and anxiety (buspar) that keep me from getting hysterical from insane itch. Stress causes my itching to go into overdrive. Dx with kidney cancer Nov 2018 (kidney removed) so trying to stay 'clean' of any new drugs without approval from Dr's. So fortunate it was Stage 2 no spread - just on surveillance. Caught by accident on CT scan for liver. FYI if any PBC patient here has a CT ask if they'll do 'abdominal area' organs. Kidney is silent cancer thats usually no symptoms till spread. Reading articles they say 'its only caught while trying to diagnosis something else!"

If i hear of anything new on the itching treatments i'll post here. I'll be thinking of you and hopefully you can find a combo of 'stuff' to give you some relief.

cazer profile image
cazer

Poor you... I completely understand, I suffered severely with it for 20 years.. So like you probably tried most things...

Hang on in there but do speak to hepatologist about how you are feeling..

Tips which may or may not help..

Don't wear socks... Temp makes a big difference I found... Try to keep slightly chilly.. That helped me..

Keep bedcovers minimal and try and sleep with feet out of the covers.

Extra activity gave me worse itch.. So perhaps try and cut back a bit...

Just give yourself a bit more rest... Everyone is different but I found fat and junk food made things worse.

Know we are here for you and keep plodding on... Very best wishes to you x

Mulvaney profile image
Mulvaney

I too suffer from itch from PBC AND lichen planus. My remedy is to keep busy. I read 4 or 5 books every week, I do the New York Times crossword every day AND I shop in China on my computer. I find doing things I enjoy takes my mind of it. I hope this helps. By the way, the stuff I buy in China is really cheap e.g. watches for $6 and It is fun when the packages arrive and when I give them away.

Anne, Toronto

Arlie profile image
Arlie

Car , hi when I was itching bad , I bought a gallon bottle of apple cider vinegar ,,, I filled the tub with water and poured in about 2 cups of the vinegar and soak in the tub , after I got out , I cryed off and spread coconut oil on my whole body , I hope it works for you

donna01 profile image
donna01

I recently started Claritan non drowsy and its helping a bit. So far better that Sarna or cholestyramine. Give it a try. I hear benadryl helps some people too. Good luck!

Carrickgal profile image
Carrickgal in reply to donna01

I've tried every type of antihistamine I actually find they make it worse. Thanks for replying x

Karaxxx profile image
Karaxxx

I was diagnosed 4 months ago & started on urso. After a few weeks I began itching, I stopped taking it & the itching stopped. I was then told to start with a lower dose & work back up to full. Within a week the itch was back. It’s hideous, kept me awake at night, & in the daytime at work I’m sure people thought I had fleas! I was started on rifampicin 150mg 10days ago & thank god it is starting to ease up. Not totally gone but so much better than it was. Antihistamines didn’t work for me, I don’t know if I will have to take this drug forever or if the itch will just go away. I wasn’t itching at all before taking urso.

Carrickgal profile image
Carrickgal in reply to Karaxxx

I itched for years before diagnosis. Am on Rifampicin now and it does help. I just hate taking so many tablets. Any other pill I take makes the itch worse, antihistamine, paracetamol, everything xx

June9961 profile image
June9961

Hi Carrickgal, my sister had so much severe itching that she was getting depressed and marking Her skin with scratching. In the end she had a liver transplant which got rid of the itching. I am lucky because I have just had the body pains. Speak with your consultant and see what else they can come up with. Xx

Carrickgal profile image
Carrickgal

Hi June thanks for reply. My consultant knows and transplant is is on the cards. Yes the body pains I know all about that too. So glad we have this platform to have a moan and get support xx

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