PBC Foundation

Concerns

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 .

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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

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

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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

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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.

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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

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The fibro diagnosis has since been revoked by a second rheumatologist who in her words (didn’t like that diagnosis) so no nearer to the real cause.

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