Anyone else got PBC and Polymyalgia?

Hi I'm new to this forum, although I was diagnosed with PBC in 2005 aged 46. Earlier this year I was diagnosed with Polymyalgia and have been on steroids ever since. I am currently off work with fatigue (5 weeks so far) and can't get either GP or Consultant to change their minds that it's not the Polymyalgia but the PBC that is caunsing the fatigue. As a consiquence they keep putting the steroids back up.

Just wondered if anyone else had suffered with Polymyalgia and what their experience was.

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  • Hello JillR.

    Have you contacted the PBC Foundation at all? I rang them up over a year ago now and asked if they'd kindly mail my GP their leaflet for PBC that they have produced for GPs. I got informed that rather than they send it direct to the GP surgery where it could probably get filed away, they'd send it to my home address which they had as I made myself a member in 2011. I got the leaflets x 2 as well as another patient leaflet from them. I did glance through the GP leaflet on receipt and it does go into a bit of detail about fatigue. Maybe that might convince your GP otherwise?

    I was rather fatigued in 2010 when I started itching, thought it was due to working full-time but over the allotted working week at the time (I had to step in as Covering Manager, being a small shop I started going in early to catch up and finishing later). It was the itching that was getting to me as I thought it odd. I didn't bother overly-much about the fatigue as given ups and downs I had in my life over many years (losing my parents and my husband in the space of 10yrs and having to raise 2 young children), that was of no surprise.

    After diagnose and a change of lifestyle I slowly started to lose the fatigue and I've not actually suffered from that in all honesty I'd say about 2yrs now. The itch is a different matter though but I find the GP doesn't take that very seriously either, shrugs it off if mentioned (won't have any meds to try for it as presently tolerable but never been offered any by anyone yet). I'd like to give a few doctors the itch for say a couple days and see how they get on!

    Keep us posted.

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