Has anyone had diabetes insipidus linked to autoimmune disease?

[TastingTheRainbow]

My daughter was diagnosed with Granulomatosis with Polyangiitis recently, affecting her nose (deviated septum), ears (unilateral hearing loss), joints and lungs. She seemed to be doing well with initial treatment and was started on Rituximab and Avacopan, the so called wonder drug they told us.

Fast forward a few months and Avacopan is recalled so stopped and now she’s having a massive flare up. She’s back in hospital, lung function has reduced from 82% to 50% and they are now suspecting it’s affecting her brain also resulting in Diabetes Insipidus.

She’s been through so much at such a young age and it seems never ending. The doctors keep telling us this is so rare in children that almost no research exists so all they can do is trial treatments used in adults and assess how it’s doing and so she’s back on intravenous steroids but still doesn’t seem to be improving.

Such a worrying time right now. Has anyone had diabetes insipidus? Particularly caused by damage to the pituitary gland. Just need to hear real life stories of people being ok rather than doom and gloom medical facts right now.

This must be so stressful. How old is your daughter? Diabetes insipidus is very rare anyway, and immune mediated even more so, so I can imagine it's a very lonely journey. I don't have any help to offer but just to say I'm thinking of you all and hope they come up with a protocol that relaxes her immune system and prevents it attacking anything else 😢

Thank you, she’s 13.
The diabetes insipidus has been confirmed today with fluid restriction test. The vasculitis has caused inflammation in the brain which is preventing the hormones being produced by the pituitary gland is how they explained it today.

Ah, @Anothercake, I'm sorry to hear about your daughter, it must be so worrying for you. I hope she is ok, particularly after the water deprivation, it can be quite brutal!

I was diagnosed with diabetes insipidus 2 years ago, but am in my 50s. It came out of nowhere literally overnight and I spent the summer drinking vast quantities of ice cold drinks (7-8 litres per day) whilst my GP tried to work out where on earth to refer me.

The answer was to an endocrinologist and once in the system, everything moved very quickly! Mine is caused by some sort of growth on the back of my pituitary gland, but nothing else is affected. The huge change for me was when they put me on desmopressin and I was able to sleep through the night and not spend my life drinking and on the loo!

My experience is clearly different to your daughter's, but do contact the Pituitary Foundation as they are likely to have experience of similar. Make sure an endocrinologist is involved in your daughter's care (it is very easy to dehydrate with DI or to over hydrate on desmo, both of which carry risks). There is also an amazingly helpful UK Facebook group for people with DI which has lots of parents and carers on too.

Most people don't know I have any sort of issue as the treatment has sorted it out. I work full time in term time and have 4 children, can get tired but that is quite possibly more attributable to age and life stage. I just have annual MRIs and an endo check as they decided against surgery, and all is going well.

Please feel free to DM me but do check out the other resources as they might be better placed to help with your daughter's situation. Very best wishes to you both and I hope she is on the mend soon.