Concerns : After a definite diagnosis 5 weeks... - PBC Foundation

PBC Foundation

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After a definite diagnosis 5 weeks ago of pbc and aih consultant started me on proper dose of urso and steroids for aih , within 24 hrs the constant muscle pains had gone as had the fatigue, I was s new woman 😄5 weeks later steroids reduced from 8 a day to 6 a day and immune suppression drug added , pain has started to come back on my arms and wrists , a little bit more each day . Feeling more tired ( not fatigue) . Feeling good walking managed a 5 k brisk walk at work today ( 6 weeks ago I struggled to walk up the stairs ) just really don't want the pain back again , consultant says pain may not be caused by liver and only gone away because of steroids , so still on waiting list for rheumatology .

6 Replies

Hi Louisethew

It is good that you responded to medication so quickly. I hope your wait for rheumatology will not be long having experienced better well being I am sure the thought of going backwards is unhelpful. A 5k walk is amazing and I am sure very good for you. Let us know how you get on.

Best wishes

Had the same problem with pain in joints and muscle also went to rhematolagist and was told pain was totally down to pbc.

Louisethew in reply to kimphoebe

To be fair saw the rheumatologist months ago , he looked at blood results and said it was aih , and to go see the liver dr and if biopsy was negative he would do more tests . Biopsy confirmed aih and pbc

My fibromyalgia was diagnosed six years before aih! So for in my case! muscle pain is due to fibromyalgia. I hope that was it for you and no more pain.

URSO can can cause muscle pain its quoted as a side affect. I was diagnosed in February and started URSO since then l have had muscle pain and spasms. I didnt have this before URSO. I was on steroids for 10 years because of lupus and did generally feel better


I had lots of lower body pains( bone and muscles) including the tops of my feet.

Rheumatology originally said fibromyalgia and vit D deficiency. It improved once I took vitamin D as I was seriously deficient. I still get it sometimes but no where near as bad.

I also read it can be a side affect of urso which surprised me.

The fibro diagnosis has since been revoked by a second rheumatologist who in her words (didn’t like that diagnosis) so no nearer to the real cause.

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