PBC & Sarciodosis

[TracG]

I have had PBC for 9 years. Over the last year i have developed red / purple skin rashes. I have had a biopsy and been diagnosed with sarciodosis type granuloma. I now have an appointment with a dermatologist to discuss treatment options. Has anyone else experienced condition?

[Hidden]

Hi, I was diagnosed with sarcoidosis in 1995/6 and then PBC in 2009 I also have Sjögren syndrome (dry eyes) all are autoimmune diseases. I was given a topical steroid cream for sarcoidosis on my skin and it worked for me and cleared up after a while, I had a liver biopsy and was told the sarcoidosis Granulomas had affected my liver, I was given steroid medication to take for a few months, gradually reducing the dose to nil. Although suffering from the severe fatigue I cope with the disease, only do small amounts of work and rest mist of the time. Hope this helps you xx

[Hidden]

**oops! Should read most of the time not mist

[TracG in reply to Hidden]

Thank you for letting me know the impact and the treatment you were given. Where did you have the Sarciodosis and how did it affect your liver? I have the Sarciodosis on the top part of my legs and was given topical treatment which unfortunately did not help. I have been told the next option will be oral steroid medication and like you start off at a certain dose then hopefully lower this until nil.

Thanks 😊

[Hidden in reply to TracG]

I had sarcoidosis on my back, it developed from a single lesion to a large amount, the steroid cream worked on the skin eventually but my liver was inflamed, the tiredness was unbearable, the steroids sorted me out. Consultant just monitors bloods every 6 months, keep smiling xx

[TracG in reply to Hidden]

Hi. Thanks for getting back to me. It's good to talk to someone with some experience of this condition. Stay well 😊

[Debbiem40]

I was diagnosed with Sarcoidosis two or three years before PBC and funnilly enough I have never put the two together. I have never been given any treatment for it and I have 2 unslightly purply lumps on my arm and one on my hip.

[TracG in reply to Debbiem40]

Mine started a couple of years ago and it was only a couple of patches. Unfortunately over the last year it's spread. I was told it may have been better had I got treatment sooner. If you think it's progressing go to your consultant and discuss possible treatments. Stay well. 😊

[Debbiem40]

I saw Dermatology a couple of years ago and they said there wasn't anything they could do.

[TracG in reply to Debbiem40]

Hi. After I was diagnosed a couple of weeks ago the doctor told me various options. Basically if the topical cream didn't work the next option could be light treatment, injections oral steroids etc. I Googled treatment options and it was as she had said. The doctor is sending me to the dermatologist who decide what is the best treatment and what dosage of steroids. You may have seen Dinny's post about the treatment she received which was very interesting. I will post an update to let you know how it goes. Stay well and strong. 😊

[Debbiem40]

OH actually I think they mentioned steroids but I think didn't want to go down that path. I may ask again when I go back to the Liver Clinic in December. Thank you. Keep us updated with how your treatment goes