PBC/AIH

[She-66]

hi

I have pbc/aih and on the usual meds . Just wondering if anyone has any trouble with their joints . I am getting so much grief from my knees . Had one sore one but then turned in bed last night and simply twisted the other one and am proper hobbling today ! I am overweight so I know that won’t help but can this be linked?

Know if I go to the drs they will just say it’s my weight but surely turning in bed shouldn’t hurt it ?

Work in a SEN school and back in on Monday… going to be fun !

Thanks

Sheila

[Readlots]

Hi Sheila, I share your pain! I have AIH /PBC. I’m also overweight. I’ve had hip and knee pain on and off over the years. Last year I had a frozen shoulder. I don’t know it’s linked to my autoimmune conditions but I’ve assumed not. I found cool packs helped and a pillow between my legs in bed helped with the hip/knee pain. It’s difficult because I avoid medication because of my liver. I did by a tens machine because that helped with labour pains but I didn’t find the right settings for my shoulder. In Suffolk you can self refer for physio without going to a GP. Might be the same where you are.

[She-66 in reply to Readlots]

Aaah thanks I’ll look into that ! Need a boot up my backside and get some weight lost !

[Readlots in reply to She-66]

Good luck, it’s miserable being in pain and you get into a vicious circle. Knees hurt and fatigue kicks in so you sleep more, do less, put on weight so your knees hurt more etc An osteopath recommended walking 10 minutes 3 times a day fora week, building up by 5 mins per session each week. Once I was walking 20 mins, 3 times a day (plus orthotics in my shoes) the pain was gone.

[Auds5]

Hi. I too have been diagnosed with AIH / PBC and on enough meds so try not to take painkillers etc. I also suffer hip and knee pain and use a knee pillow for sleep which helps my hips. As for the knee pain I put on a ginger poultice which draws out the inflammation and helps relieve the pain.

[LorraineLouise]

I too have PBC/AIH.also rheumatoid arthritis. I have been put on a low-dose of Azathioprine,by my rheumatologist. It has helped with my joint pain. And also brought my liver enzymes to within a normal range. The first time in eight years that they have been normal. I don’t know if you are taking Azathioprine or not. But it might be something you want to discuss with your doctors.

Hope this helps you the way it has helped me,

Lorraine Louise

[She-66 in reply to LorraineLouise]

Aaah thank for your reply … I was taking azathriopine but I couldn’t tolerate it , I take merctaupurine (think that’s how you spell it ) .. think they have similar properties x

[LorraineLouise]

oh ok. Yes very similar

[LorraineLouise]

She 66

I’m curious, do you take Urso. Along with your. Other drugs? My doctor has taken me off the Urso since my liver enzymes ,are in the normal range. Since I started the Azathioprine. I have been on Urso,for eight years with, Not great results. Bringing down my liver enzymes. Once I started the Azathioprine. They have gone to a normal range.

[She-66 in reply to LorraineLouise]

Hi , yes I take urso and prednisone. My bloods aren’t too bad at all x

[LorraineLouise in reply to She-66]

Thats good to hear .i’m gonna see how my next labs are and if they still stay good. I will stay off the Urso I can always go back on it if need be. Thank you for your response. I appreciate you and wishing you a great weekend ahead.