Arthralgia and myalgia

[Nellies47]

Hi.

I was in hosp about 1 month ago with bone, joint and muscle pain and extreme weakness. My crp was 67, platelets 450, eosinophil raised . Had bloods test for ANA and ANCA. Both neg. A month on and my LFTs are more raised than ever and my crp 20 . My bone, joint, muscle pain persists and weakness has resolved. I'm on vimovo that's helping.

I saw a rheumatologist last week who feels this is autoimmune flare and doesn't know if its a false neg ANA or caused by PBC. But I'm worried about my lft raise. I'm on Urso.

Could this be pbc or anyone else have any ideas.

Thank you. Nellie.

[Candy12]

I can’t help really only to say, if your bloods are out from what is normal for you and your still having symptoms then it probably needs further investigation. Or at least a watchful eye from your doctors. I suffered bone pain that was found to be from a deficiency in vitamin D, might be worth getting it checked.

I wanted to point you to the PBC foundation Facebook page, they have question and answer sessions every Thursday. This week they talked a little about bone/joint and muscle pain you might find it useful to watch. Or maybe submit a question on where or what you could do next.

[Nellies47 in reply to Candy12]

Hi.Thanks very much , that is helpful.

[Deasimjay]

Hi l am Colleen and 68 have had PBC since 2008. I get horrible pain and muscle weakness. I have been diagnosed with Polymyalgia rheumatica. I take a small dose of cortisone to keep it managed. But it has not entirely gone away. And worse at times. My hands are so stiff ,my hips my shoulders. It is terrible but the cortisone helps a lot.

Good luck

[Nellies47 in reply to Deasimjay]

Hi.Thank you for your reply.

I'm on arcoxia now but it's not gone, but not as bad. I only have 4 days left of arcoxia then if the pain is bad again rheumatologist is going to put me on placonil, sorry can't spell it😄. I don't have diagnosis for my arthralgia and myalgia only that rheumatologist says it def autoimmune picture. If I over do it or don't have my nap it gets worse.

Hope your well.

Thank you

[CeeJay56]

Hello, Nellie. I feel your pain and hope you are feeling better. I’m 67, have had PBC for 10 years with AIH overlap, and didn't respond to or tolerate URSO or Ocaliva.

Several months back, I suddenly started having terrible joint, muscle, and then tendonitis pain. I could barely get out of bed my sacroiliac pain was so bad. Got in to see my liver specialist who did a slew of tests and sent me to the rheumatologist. He did yet more tests and decided it was rheumatoid reaction to the autoimmune disease that was causing all my inflammatory markers (including RA, ANA, CRP) to be elevated. They decided to try 8 weeks of a tapered prednisone dose, which helped immensely. I then continued on a dose of hydroxychloroquine. I am beginning to have a return of the joint and muscle pain and believe another round of prednisone will be likely. These are both drug used is the U.S. so I’m unsure of the equivalents in Ireland, but it certainly has helped.

I wish you well and hope you find a combination that works for you. I do recommend you ask about this combination that worked for me.