Anyone else have their PBC itch stop? - PBC Foundation

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Anyone else have their PBC itch stop?

kp1234 profile image
11 Replies

After beginning treatment for another condition (ET) my PBC itch has almost completely disappeared--so happy! Has anyone else had the itch stop? If your itch stopped did it return?

I have stopped taking the meds. for itching. Still take URSO.

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kp1234
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11 Replies
Melwoods profile image
Melwoods

Wow what ate yoy taking

I’m on the transplant list for the itch

butterflyEi profile image
butterflyEi

Wow! not good that you have another condition but great that the itch stopped. Mine is still with me.

cazer profile image
cazer

what sort of treatment was it??

and what's et???

Wocket profile image
Wocket

Can I have some of what you’re taking 😁

Philippastcarin profile image
Philippastcarin

I tried everything with no luck then last attempt and very much a long shot, tried Citirizine a cheap over the counter allergy tablet.

All but gone, so relieved.

Good luck.

genj65 profile image
genj65 in reply toPhilippastcarin

Hi so did the Citrizine stop the itching totally after taking for awhile or are you still taking? Oh I need relief I'm up now at 1:30am praying for it to stop going to take my children's liquid BENYDRYL now to go to sleep 🙄

Thanks;

Hi

My itching has stopped just now! At it's worst I was scratching so badly I was bleeding, waking in the night scratching, dreaming I was covered in insects!! I've only been on URSO since November, nothing for the itching, but I can honestly say it's gone completely (for now) A little of me thinks once ideas itching, it got in my head so I was almost making the itching worse!!

Lynn

kp1234 profile image
kp1234

The other condition I have (ET) is a form of benign blood cancer--a symptom of that is also itching. Since starting oral chemo my platelet count is better (was 3x high normal) and the itch has stopped. But--I don't think anyone really wants to try this for the itch! At my last appointment with the hepatologist my ALP levels were going up --- the hope is that the ET was causing this and not that I'm not responding to Urso. Next hepatologist appointment is in May and I'm really hoping that ALP level is down.

DoreenD profile image
DoreenD in reply tokp1234

Hi kp1234 I was diagnosed with ET 2014 and on Hydrea but a couple of years later it was diagnosed PV which is another blood disorder. Looking back at my blood tests this should have been picked up in 1988 when diagnosed with PBC. How are you coping with double whammy fatigue from the PBC & ET plus I finish my shower with cold water to help with the itch after showers. Take care Doreen

kp1234 profile image
kp1234

I am so lucky! No fatigue. I'll be 68 in about 2 months and still work full time as a 4K teacher in a program for "high risk" children.

Cumbria7 profile image
Cumbria7

hi

My itching is horrendous, it keeps me awake at night. I have tried cholestyramine but it made me feel nauseous and did little to stop the itch. I then tried colesevalam which did not help. I’am now waiting for rifampacin I think that’s what it is, sorry spellings may be wrong, I’am at my wits end with the itch it’s driving me to insanity xxx

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