systemic itching - no rash: I am a 57 year... - PBC Foundation

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systemic itching - no rash

hashiB12sjogrens profile image
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I am a 57 year female with long standing Hashimotos, B12 deficiency and Sjogren's syndrome. I am treated with combo T3/t4 (very good endocrinologist - keeping my TSH supressed and free T3 T4 ok) and B12 injections, and of course eye creams! Over the last couple of years I have been having very distressing episodes of unbearable itching which nothing seems to help and with no idea as to the cause. My Gp has prescribed gabapentin and previously anti-hystamines but neither really help. The hell lasts a few weeks and disappears - most recently for almost a year before coming back to bite me. I really hoped it had gone for good - but this time seems to be even worse than the last! My lovely soft cotton clothes sometimes feel like they are made of barbed wire - I itch and I prickle all over and my skin actually hurts - but no rash. My Gp increased the gabapentin but it made no difference so I have reduced it with a view to stopping it - what's the point taking such a drug if it makes no difference to the symptom? I wonder if any of you have this (and I'm really sorry if you do)- or can throw any light on what is an absolutely awful symptom. I cannot think of a single trigger - believe me I have tried. If I could rid myself of this, I would. Many thanks in advance

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hashiB12sjogrens
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butterflyEi profile image
butterflyEi

hi hashiB12sjogrens

It is all a lot to put up with. I have tried to work out the triggers for the so called itch of PBC but nothing seems to fit. Like you I have a B12 deficiency in the guise of pernicious anaemia and suffer with dry eyes but I have never had a diagnosis from the GP for sjogrens. I recently had a diagnosis of peripheral neuropathy and was initially given gabapentine but after a month another GP would not put the gabapentine on repeat prescription and suggested it was just bad luck and that I should use mind over matter. As an itcher I am prescribed (in order over many months) cholestyramine, rifampicin, sertraline and I use a 2% menthol cream when the itch breaks through. Although the cream is temporary as a topical application it does seem to confuse the skin and underlying tissue for a short while.

hope the above will help

best wishes

hashiB12sjogrens profile image
hashiB12sjogrens in reply to butterflyEi

Thanks butterflyEi - much appreciated! It does help!

I am trying the menthol cream for now but noting the meds you have tried! Fingers toes and eyes crossed!

By the way - I had peripheral neuropathy many years ago - when very low in b12! Take

care

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