Does HSP / IgA Vasculitis cause sleep problems?

[jafan]

My 12 year old daughter is just on her third flare up with HSP / IgA vasculitis. She is struggling to sleep. Has anyone else noticed this as a symptom? Just wondered if it was a symptom, or whether it is a lock-down issue and unrelated?

[PMRpro]

What medication is she on?

[jafan]

No medication at present

[PMRpro in reply to jafan]

Can't blame that then. Always the first place to start.

But the combination of that and lockdown can't be helping - have you access to any counselling for her?

[jafan in reply to PMRpro]

No access to counselling. When she was first diagnosed she was incredibly anxious, but now is far more accepting and less worried about it. Having gone through 3 cycles of the flare ups she can see that it does improve albeit temporarily.

[PMRpro in reply to jafan]

It is hard at that age. Sorry I can't help more.

[jafan in reply to PMRpro]

Thank you for taking the time to reply

[PMRpro in reply to jafan]

Did it start with the steroids? That's why I asked about meds. Even if it was a relatively short taper the effects do sometimes last - and once a habit is "learned" it persists even if there is no apparent cause. You have discussed it with her medical team?

[jafan in reply to PMRpro]

No she slept well on the steroids once the abdominal pain settled. About a week after coming off the steroids she had a bit of a sleep blip for 2 nights, but since then she has slept well until these last few nights. Her hands are really swollen today and covered in a rash and she's running a temperature of 37.5 so I guess there is a lot going on in her body at the minute!

I have emailed the hospital concerning the new information about the reaction that some children are having post covid19 given the similarities to HSP it is a worrying time. My daughter doesn't know about this. I don't let her watch the news at the minute! I haven't asked about the inability to sleep but if it continues I will do.

Thank you

[AmyS1]

High dose Steroids cause sleep issues. Also if she is tired lies in then takes her steroids at say 9.00am she will have more sleeplessness if she was to take them at 7.00am. It is tricky the sleeplessness then leads to tiredness etc. NHS website re sleep problems can be helpful. Amy

[jafan in reply to AmyS1]

Hi she has been off steroids for about 5 weeks now so I was just hoping to hear what others had observed. I will have a look at the NHS website about sleep thank you

[Suzym2u Moderator Vasculitis UK]

Are the HSP flares causing her pain, feeling very uncomfortable or nauseous as these symptoms can cause disruption of sleep.. ?

[jafan in reply to Suzym2u]

On Friday night she was feeling nauseous and her joints are swelling at the moment so I think it is that is the cause. When the flare up has happened in the past she has managed to get some sleep,, but at the minute it is minimal

[lou1972]

Hello

I have Cutaneous Vasculitis and have had it since 2015 and had many flare ups and currently have one now, I am in my 13th week with it. Not sleeping at night was a big issue for me,.I have started back on Amitriptyline and that has helped but not sure if your daughter will be allowed it. I have just started Colchicine again but early days. It is the most horrible thing to deal with, I have sat and cried many a day.