Fingers: I am wondering if anyone else has... - PBC Foundation

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Fingers

magria profile image
7 Replies

I am wondering if anyone else has experienced problems with their fingertips and nails (e.g. loss of sensation and thickening of tips of fingers, nails becoming painful and red at base) after having taken urso for a long time. I had similar problems sometime ago after an extensive course of medication for tuberculosis and I am wondering if there could be a link.

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magria profile image
magria
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7 Replies
gwillistexas profile image
gwillistexas

Have you been tested for Raynauds Syndrome? The cold affects my fingers. Schleroderma can also affect the skin and cause thickening.

magria profile image
magria in reply togwillistexas

Thank you so much for your reply. Yes, I do have Raynauds - but this is different - the pain and loss of sensation does not pass. Take care.

Kakey profile image
Kakey

I have nail issues too, but not loss of feeling. I also have Raynaud's. I already had these probs before Urso, so it's not that, for me anyway.

tiscse profile image
tiscse

I was diagnosed in 2012 and been on urso ever since. I don't have any of that. My nails actually are thin and the top layer peels off sometimes. But I don't have Raynaud's.

CriCutLady profile image
CriCutLady

I have had Raynaud’s for several years. PBC diagnosis almost 4 years ago. I started the AIP diet when I found out I had PBC and have slacked off a bit this year. I noticed Raynaud’s symptoms improved with AIP, especially when avoiding gluten and dairy. It’s amazing how symptoms improve when one eliminates certain food groups. I’ve also read caffeine and alcohol can aggravate symptoms. My best to you as you search for help with this. May God take care of you. 🙏💕

magria profile image
magria in reply toCriCutLady

So sorry to be so long in replying to you - and to all those who kindly responded to my question.

Covid 19 put all appointments on hold. But, after16 months, I eventually saw a cosultant again.

I am doing well re PBC.

You, and others, were correct in suspecting a connection with Raynauds, which is, of course, often in the PBC package.

The finger problem is, he believes, Secondary Raynauds and he is referring me to a Rheumatoid Arthritus specialist.

Thank you all for taking the time to message. Having PBC one can sometimes make one feel alone.

Take care..

CriCutLady profile image
CriCutLady in reply tomagria

I’m happy to hear you are doing well. Just remember on your down days, you are never alone. When we accept Jesus as our Lord and Savior, He promises to never leave us forsake us. God bless you 🤗💕

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