Painful joints

[Janicemr]

Hi everyone I have had PBC/AIH for 5 years I have been on steroids since then the inflammation in my liver has gone down so they have taken me off the steroids by one every month so have now been off them for about 2 month's I have gradually had more and more pain from my fingers to my toes if I sit down it is very painful to stand up again because of the pain in my knees. I am very stiff when I first start walking. At night I wake up with all my joints throbbing any body got any ideas what it could be

Thank you

Jan

[kimphoebe]

Hi there,

The same thing happened to me when they took me off steroids, been of them now a couple of years and still have pain in bones. Hep doc did suggest a low dose of steroids going forward but I refused. Have you had a dexa scan yet to check for oestioperosis. Some days are worst than others and but every time I mention it to doc they just say take paracetamol.

Also maybe get your vit D checked.

[Skypony]

Hi Jan, this may be unconnected to your PBC/AIH (except that autoimmune diseases often go in clusters) so I'd suggest you need a rheumatologist to diagnose it properly. Stiffness after inactivity can be characteristic of arthritis, which the steroids may have been masking - or helping. If it's hurting that much (poor you, I'm so sorry!) it may be an inflammatory flare-up and you should be referred promptly by your GP.

The advice to find out your bone health with a dexa scan is good, so you can guard against osteoporosis too.

Best wishes, and I hope you get this sorted out soon.

[skdavis59]

Good morning, I also have PBC/AIH. Diagnosed in 2011. I too have pain in joints and muscles. Hands and fingers swollen from it. I also have osteo arthritis. I see a rheumatologist. There is not much we can take for the pain due to the liver. I sometimes will take flexiril so I can get a good might’s sleep, but it makes me drowsy the next day.

[SandraS]

Hi, i too have PBC/AIH, i have had 2 rounds of steroids and both times have suffered joint pain after stopping treatment. My consultant warned me before the 1st round that this would happen as its a withdrawal symptom and can take a while to settle. I finished my last course at end of January and I'm still having some pain but it has eased off a bit. I use an anti inflammatory gel it does help ease the stiffness.

[Vivaldii]

Hi I have arthritis but it is very aggressive currently being tested for Sjogrens and lupus .The markers for PBC are also markers for other auto immune diseases that can have an arthritic element to them. I go to a rheumatologist and I take oxycocet for pain as needed. There are nights I wake up and feel as if my body is on fire Good luck with diagnosis x

[KimRenee]

Same here as everyone else. I’ve been off since December and hurt all over. However the good part is not being on steroids. I feel better all except for arthritis and of course fatigue. I take 1 50mg. tramadol no more than 1 in 12 hours. That’s half the dose of someone without Liver disease. Also I only take if I just have to.