Steroid insomnia

[shouty]

Hi all

Hope you all safe in this bonkers time.

Must admit sleepless nights are starting to get to me. Only seen to be able to get 1-3 hrs at the most. Am still on 40mgs Prednisone till I speak to Consultant on the 24th.

[ThisAdventure]

Hi,

I feel your frustration! For me, It wasn’t the prednisone, as the insomnia didn’t let up when that dropped to my lowest dose after my transplant. But tacrolimus and celcept (mycophenolate) both list insomnia as side effects. Sorry, I’m sure that’s not what you want to hear if you’ve had a transplant...

But chat to your team about your options - sleeping tablets don’t work for me as they make me completely wired. But I’ve had amazing success with melatonin capsules (on prescription) every evening - which is something your body produces naturally so has no nasty side effects . My dr also mentioned CBD as something that may work. Hope you find a good option for you as being constantly sleep deprived is certainly rough! But the good news is that there are options to help!

[shouty in reply to ThisAdventure]

Thank you so much for replying. Not a transplant patient got Nephrotic Syndrome ? What caused it hoping it's Minimal Change Disease. Will certainly try CBD as heard good things about it.Hope you are keeping well post transplant. Stay safe Hattie

[ThisAdventure in reply to shouty]

Hope that helps you - All the best!

[Kindsong]

Oh, it's a pain, isn't it? I'm so sorry to hear you're struggling. My doctors just treat my insommnia like it was to be expected...I was on 60mg prednisone and got 2 hours of sleep a night for weeks. I've dropped down to 15mg, and barely get 5 hours. I take trazadone ( a prescription) and melatonin, 3mg. But I have heard that cbd drops help. I also listen to soft music, and use a meditation app as soon as I know I won't be going back to sleep: Headspace.

[shouty in reply to Kindsong]

Thank you for your kind reply. It's a relief to hear someone else only got a couple of hours a night. Writing this at 3am 😕before starting it I loved meditation stuff but find it hard to relax enough & that makes the neuropathic leg pain. Have ordered some CBD drops. Thanks again I feel less isolated Hattie

[Shazz53 in reply to shouty]

Hoping you can get off the prednisone soon. I was in the hospital for 3 weeks with interstitial nephritis, and the prednisone definitely helped cure it, but the insomnia is zombie-inducing. Good Luck!

[shouty in reply to Shazz53]

Thank you