Pbc/aih symptoms

[Jennyhadenough]

How long can I live with pbc/aih without the severe symptoms

In January I will be 4 years. This concerns me.

I feel like my time is up and it’s time to struggle

[butterflyEi]

Dear Jennyhadenough

I don't think any one knows as we are all individuals in our shared PBC journey. You sound as if you are overwhelmed at the moment. If you have joined the PBC Foundation perhaps you might telephone or message them . They will call you back they can use What's app or FB Messenger if it is easier. Maybe they can give you some guidance on your own particular PBC difficulties. It is tough times at the moment! Best wishes

[cazer]

Hi jenny, do you mean you've not had any symptoms?? Or have I read that wrong??

[Jennyhadenough in reply to cazer]

I’m going back to school at 57 years old. Only issue is stiffness and bone and muscle ache.

I Had real bad luck with school. I got my GED at 32 years old. I started college but ended up marry a man with jealousy and control issues. I never let him forget how his behavior impacted my life. I took the entrance exam and I’m trying to start on line classes. I want to know how much work and quality of life I have left. People with pbc and aih say that aih is the problem.

[Biddyb]

Gosh you haven’t posted for a while unless I’ve missed your messages. You sound really down and worried, call the foundation and seek advice, it’s bad enough dealing with PBC/ AIH without the added problems of the virus. We seem to be over looked as do many others with health problems due to the virus but the foundation is still there thank goodness. I’ve not used the service myself as I’ve put my PBC on the back burner during this pandemic I’m looking at it as my super immune over active condition will shield me from the virus, until I can see my consultant or even my GP. Stay positive easy to say. Eat healthy scream or cry when you need to. Hope you find some good advice, as mentioned we all seem to have our own journey but hopefully the experts can help. Good luck stay safe take each day as it comes

[JaneEyre55]

I've had both for over 10 years now. I am 65 by the way. I take my meds, vitamins, no alcohol or smoking and try to walk every day. My labs are within normal range every 3 months. I do have osteoporosis and arthritis. Believe it or not I take Gabapentin which really helps the pain and Tramadol when it gets bad. Don't worry. Live your life!

[Bunter]

Hi Jenny

I am hoping this will reassure you. I was diagnosed with PBC/AIH 14 years ago, 10 months after the original PBC diagnosis. I was treated with prednisolone and then azathioprine; blood test results normalised and I eventually stopped taking prednisolone. Bloods continued to be normal. However, according to my consultant I have had “unusual” blood test results, sometimes showing AIH, sometimes not! In 2015 my consultant decided to wean me off azathioprine, as it is not normally used to treat PBC. Unfortunately once I stopped taking azathioprine my blood test results went haywire. I went back on azathioprine but eventually had to take prednisolone as well. Bloods normalised. I am still on a very low dose of prednisolone on alternate days but am hoping to stop them completely once I can see my usual consultant again. I generally feel well, live a normal life and am quite active. I do get tired (but not the extreme fatigue I had at diagnosis) and achy, but I am 71 and have arthritis. I think doing something you really want to do has a positive effect. PBC effects us all differently, but I think we have to live for now and try not to worry. Hopefully your PBC/AIH is well controlled and you will enjoy your classes.