Does anyone with IgA vasculitis monitor their urine for protein and blood? My daughter's level of protein and blood is up and down.

[jafan]

My daughter is 14 months post diagnosis for HSP/IgA vasculitis. She is still having symptoms including rashes, swelling and bruising. She often feels unwell in the evenings. I have been regularly dipping her urine and there is consistently blood greater than +++. The protein levels are up and down and on a number of times this has reached +++, but not consistently. Does anyone know why the protein levels could be so inconsistent?

[AmyS1]

How old is your daughter?? Her consultant needs to be informed if there is blood in her urine.

[jafan in reply to AmyS1]

My daughter is 13. I have been keeping the consultant and gp informed with the results of the urine analysis. It is definitely worrying me that she is having such a long period of blood in her urine.

[Cheshire_mum]

Hello, my daughter was diagnosed in November 2020 and we monitor her urine from home. Her levels of protein and blood fluctuate also. If she gets to protein +++ for 3 consecutive days then it triggers a hospital admission however that has only happened once after our initial diagnosis and admission (in January) as it will usually dip again to ++ or +. But my daughter is still being seemm every 6 weeks by a consultant and is having fairly regular blood tests so am trying to not worry too much but I have been surprised that she is still so symptomatic at nearly 4 months post diagnosis - my heart goes out to your daughter who's had it for 14 months! My daughter also struggles most in the evenings - especially with tummy ache. Is your daughter still monitored by a doctor? How old is she? My daughter is 8.

[jafan in reply to Cheshire_mum]

Thank you for your reply. It is upsetting to know that other children are suffering too, but it helps to know that they have similar symptoms. This condition seems to affect everyone so differently that it is easy to worry and dismiss other problems.

My daughter is 13. It has been a heart-breaking journey. We are still under the care of a consultant at our local hospital and we have a telephone review at the end of the month with a nephrologist from Alder Hey.

My daughter suffers with tummy pains and pains in her legs and rashes which can be quite itchy. Currently she has quite a high dose of a stool softner so that seems to help keep the pain at bay in her tummy. She has also had steroids twice. The pains in her legs and tummy she often describes a bit like the pain you have when you start to get feeling back after pins and needles.

I hope your little one improves and doesn't suffer this much longer. There are some great support groups on facebook if you haven't already found them.

[John_Mills Volunteer]

Is your daughter being monitored closely by her consultant, it is important she is. IgA vasculitis can be more difficult to treat and manage in adolescents and adults so it’s essential she is seen by doctors who have experience, knowledge and understanding of IgA vasculitis.

[jafan in reply to John_Mills]

Thank you. Yes currently under the care of the local hospital and Alder Hey Hospital. The care we are receiving is great.

[John_Mills Volunteer in reply to jafan]

This is good news to hear. We know the doctors there well.