Feeling Deflated

[chezevo]

My 15 year old daughter has been doing so well on her medication, her brain activity is back to normal and she seems her old self again but yesterday (at what we thought was her last Cyclophosphamide Infusion) we were told that her ESR levels have risen again so now her consultant wants her to have another infusion next month.

When she was first diagnosed (Lupus SLE and Nephritis) it attacked her brain and her kidneys but as I say her brain seems to be just fine so it is either her kidneys or somewhere new. Her ESR was 45 when first diagnosed and it has varied over the past few months but the last 2 readings were 30 (March) and 24 (April), yesterday they have gone up to 41.

I am thankful that we have a fantastic Rheumatologist and I know he will get to the bottom of it but I just can’t help feeling deflated xx

[svfarmer]

I can understand why you feel deflated , sounds like you and your daughter have been going through some very tough times- but great news that her brain is back to normal 😀 sounds like you have a very good consultant to give your daughter the best treatment. Sending best wishes and hugs 🤗 to you both x

[happytulip]

I get that you feel deflated and it must be such a difficult thing to see your daughter go through this, especially at such a young age.

An ESR test isn't as accurate as some may think. An ESR assay can be run on the same blood sample 10 different times and you can get 10 different results. I'm not saying to dismiss it or ignore it but it sounds like your daughter's symptoms have improved with her treatment and that should be a ray of hope in these difficult times?

Obviously other tests will indicate her level of inflammation and her kidney function. And it sounds like you have faith in her Rheumatologist.

I hope that she continues to improve and her treatment isn't to taxing on her. Take care.

[Kevin53]

It’s good that you have a Rheumatologist whose guidance you trust. My daughter was in a similar position at 15; she is now 33, a solicitor and happily married. She continues to monitor her health successfully with her consultant. Best wishes Kevin