Vasculitis UK
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my sister with CSS woke up with a red rash on her face and neck, also her neuropathic pain in her foot is in more pain, Is this normal?

I said for her to take an anti-histamine for now.

On Friday gone my sister had her 3rd bout of Cyclophosphormide, also that day her prednisolone lowered from 60mg (on that dose for 4wks) to 45mg. She did take her Pregabalin and amatriptyline a bit later than normal last night. We can't get to speak to her Rheumatologists secretary til Wednesday then not sure when the rheumatologist is in next. Thank you!!

5 Replies

if her symptoms are excruciating then she should go to her nearest A&E otherwise I would say ttreat the symptoms and wait till wednesday when the rheumatology dept can be contacted. Sending her best wishes, this is the same disease that I have.

Aud :o)


Thank you. My sister said she is going to see how she feels tomorrow. My sister just got diagnosed 2 weeks ago so this is her first experiences on the drugs and with the awareness of her condition so its all unknown to us.

Thank you for your answer and best wishes to you too.


It does sound as though the prednisolone may have been reduced too quickly. As Mumito has said going to A&E or ringing the out of hours GP would be a good thing to do if the pain is too much. It might be just a case of increasing the dose of prednisolne for a short while... Other wise contact the consultant as soon as you can and tell him of the situation..hope your sister is feeling better today.

All the best Susan


Thank you! It's hard to have faith going to another doctor, it's been a nightmare. We only have confidence in her actual GP and Rheumatologist. Everyone else she's come into contact before and after diagnosis hasn't helped at all.

Thank you!

All the best to you both!


,At the same stage of treatment as your sister, I had a rash on my neck & ear, it turned out to be shingles, very very painful, If it is this I found playing the shower on the affected area for a few minutes, could give relief for 2 to 3 hours,, sounds silly but did work for me. My consultant said that immune suppressants increase the chance of shingles



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