Off 1 month from steroid still facing insomia

[Avantidave1988]

Diagnosed with ITP in august since then started with high dose to low dose of 5mg alternate days..It has been a month still facing insomnia. .Any idea by when this side effect completely goes off

[Jackoh]

Can see from when you posted that it's probably been another long night, awake, which can be so distressing. You say you have been diagnosed with ITP. Not sure what that is or whether you are on the right site as this site is for PMR/GCA. But wish you all the best and maybe go back to GP to discuss insomnia or take one of the overcounter brands just every so often to get some relief. Wishing you all the best

[PMRpro Ambassador in reply to Jackoh]

Idiopathic thrombocytopenic purpura I assume.

[PMRpro Ambassador]

It may partly be habit - you have got used to being awake because of the pred and your body isn't adjusting. Have you tried all the usual "sleep hygiene" things that are suggested for poor sleep?

I have never had much trouble sleeping - mainly I suspect because the PMR left me able to sleep for Britain although it too woke me up with pain at times. But most people find by the time they are at your dose they are sleeping fairly well. It may be something to discuss with your doctor.

[mariandrakeford52 in reply to PMRpro]

Hi PMR pro

Can you tell me what I'd suggested for insomnia. Spoke to my GP about it this morning but he just shrugged his shoulders got no answers really.

Currently my ESRVhas come down from 36 to 31 and my CRP level is now 11 from 17 last time. Reducing now from 10 mg to 8mg

Thanks. For running such a wonderful forum

[PMRpro Ambassador in reply to mariandrakeford52]

"Can you tell me what I'd suggested for insomnia" - is that what you meant to say? If so, sorry no idea! Accepting it and napping when you get the chance is probably the best way to deal with it - worrying about it just makes things worse.

I'd really suggest NOT doing 2mg at this stage, 1mg is more than enough anyway and your markers are still high even if falling - received wisdom is to be careful until the markers are in normal range. No reduction should be more than 10% of the current dose for more comfort and by this stage many people struggle with 1mg never mind 2.

I don't run the forum even if sometimes it may look as if I take it over! I just bore the socks off everybody!!!

[mariandrakeford52 in reply to PMRpro]

Sorry my last post made no sense lol you answered a question above to advantidave asking if they had tried the usual sleep hygiene for poor sleep. Just wondered what that was as I have problems sleeping.. My GP reduced steroids from 10mg -8 at this time. Sorry if I thought you run the site been looking at your posts and you and some others offer good advice

[PMRpro Ambassador in reply to mariandrakeford52]

Hehe - bad enough sometimes answering questions - running it as well would drive me nuts (maybe I already am )

"Sleep hygiene is a variety of different practices and habits that are necessary to have good nighttime sleep quality and full daytime alertness." sleepfoundation.org/sleep-t...

nhs.uk/Livewell/insomnia/Pa...

So all the things around being ready to sleep: no screens (especially computers and smartphones) before going to bed, a comfortable sleep environment, a dark room, keeping your bedroom for sleeping rather than working or watching TV, not drinking alcohol or caffeine shortly before bed and having a routine you associated with going to bed (just like we did for the children).

I don't care who reduced the dose from 10 to 8 - bet they don't have PMR!!!! I'm just warning you it may pose problems dropping that much at one go now you are below 10mg.

[mariandrakeford52 in reply to PMRpro]

Thanks for the links and swift reply I shall take a look. GP did say any probs with pain on lower dose to go back..

[PMRpro Ambassador in reply to mariandrakeford52]

Why not cut the risk - just go more slowly? It isn't slow if it works!