Raynauds? Or something else?

Hi there, my SLE is flaring at the moment and having been on mycophenelate mofetil (after Azathioprine caused liver problems) for 4 months I don't think it's helping. Currently problems with my feet, ankles, legs and toes. Horrendous pain like severe tendonitis in both ankles, extends to feet and calfs and proving difficult and very painful to walk.

GP referred to possible Raynauds yesterday as my toes are frequently swollen, and bright, bright red, they become very painful, and are either freezing cold and purple (but not blue) or are very red and feel like they're going to fall off.

I'm also having pain in right lung area, like stabbing or pins and needles - GP queries neuropathic pain? Also my skin is going mad with sores developing and also purple (I think it's livedo reticularis) looks like blood vessels on the skin.

Any suggestion? I've rung and e-mailed consultant, and rheumy helpline but neither have replied to me.


ps - GP has faxed hospital asking for me to be seen.

2 Replies

Hi slowho

Sorry to hear that I think you will need to keep on at them till you get seen I have raynauds but it s not like you describe keep at them and I'm sure youl get seen and sorted


Thanks for your reply, I'm feeling so frustrated at the moment, I haven't been seen by a consultant since Jan, and do not have another appt for at least a month. I'm due at monitoring clinic this pm so think I'm going to harass them to get seen by a consultant.

Take care.


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