PBC for my 54th birthday symptoms suck.

[Used2itarm]

Hi my name is Lisa Johnson I was diagnosed with stage 3 PBC on my 54th birthday {03/24/1960]. I have lost 121 lbs due to diet changes exercise and staying as busy as i can. I am always nauseas.extreme itching all over and sometimes extrem pain.It takes cuts,bruises and colds forever to go away. It makes my allergy itching even worse. The rib pain can at times make me want to scream in pain.Sometimes i feel like i live in the fog. The fatigue can be hell. What i dislike the most is how some people treat you like you make it all up or tell me how bad my rash or skin looks and what to do. Some days i feel as if i have a 2nd degree burns.urso is not my friend but it works. At least I’m alive I most days love life., but some days i feel ugly depressed and empty. I have to remind myself life is a gift.

[TonidMother58unkin1]

I also have serve pain on my right side . It feels like someone punched me

[CathyPBC Administrator]

Hi Lisa, You describe what most of us deal with, either all together or at some point in the PBC journey. I have severe fatigue and itching, brain fog. I was diagnosed in 2007 by biopsy at stage 1, but due to a liver injury from the fillers in a generic ursodiol in 2015, I now have cirrhosis.

As is true for most of us, other autoimmune disease is common and I have 2 AI skin diseases which make my skin feel and look horrible, full of scratches and sores because of the insessant itching. I can't sleep which just adds to the brain fog. Recently I caught a upper respiratory infection with allergic asthma and chronic coughing - which hurts my chest/ribs from constant coughing.

We have symptom challenges that vary between us and our disease stage but one thing remains common, we're all in this together.

I wish you good health!

Cathy

[Shulsey in reply to CathyPBC]

Cathy has it right. We are stuck with crazy symptoms with this PBC. It's either all at once or a little here or there. But it's all the same. Yes, it sucks, but we still have to

Stay Strong❣️

Shannon

Stage 4 PBC

[Dlm23 in reply to CathyPBC]

That is terrifying to know the only medication we have to slow the progression of this disease caused your cirrhosis! Can you share the manufacturer?

[CathyPBC Administrator in reply to Dlm23]

This is a very rare circumstance of an adverse reaction to a specific filler in a medication in the PBC community, and to my knowledge I am the only one who suffered such a result. The brand involved really does not matter. It was my particular body chemistry and that brand that caused this liver injury in me. As I mentioned before, many people I know personally take this same brand with no problems or adverse effects.

[PBCCarol]

A PBC diagnosis is not what anyone would want as a gift! I had my diagnosis but my first biopsy was done on Good Friday - nothing good about being told you are stage 4. But that was 1999 and with URSO I am still at stage 4 and feeling pretty good! You mention URSO is not your friend - I will assume it is one of the generics? You could try a different manufacturer as most issues are from the fillers not the basic med. I was originally on the brand name Ned when it came out, after the generics were introduced I was taking the one that was the same as the brand from Prasco (pill marking URS790). Later I was using Glenmark Pharma (U11). One refill it wasn’t available and I was given ursodiol from Global Pharma and became really sick, went back on Glenmark and was fine! Last month again my pharmacy couldn’t get Glenmark so I tried Par. In three days I was sick, itchy and feeling bloated. I stopped taking it and pharmacy was finally able to get Glenmark again for me. So my point is if you haven’t tried different manufacturers you should because all generics are not the same except for the basic med used.