Prednisalone insomia- feeling frustrated

Hiya all. I will write a blog about this too but I really would appreciate your comments and thoughts. I've been started on the COBRA light steroid protocol, 30mg a day for a week, then reduce by 5mg. I started to get pain and a flare last week whilst on 20mg so my Rheumy nurse opted to keep me on 20mg. Now, since being on the pred my energy levels have improved. Yes, no doubt. The first 2 weeks were great, no pain and I have some energy and some pain up to a lot of pain. BUT the biggest issue I have is insomia. Never had this before....I was still awake at 5am this morning. It's not fun. Has anyone else experienced this? Is it a fair trade off? Being able to care for my 2 year old bouncy and busy twins with energy but can't sleep at night u patio after 4 or 5 days I crash and burn into a flare up? I feel stuck between a rock and a hard place. If I reduce the steroids the pain and fatigue will come back but keep on this level I have insomia?! Feeling frustrated..

8 Replies

  • What time do you take your Pred? I've been on high dose Pred since September, for Vasculitis. 40mg tablets daily, along with 5 methylpred infusions (1,000mg each). Down to 10mg daily now. I've always taken mine early in the morning. This gives you the energy when you need it, but hopefully will not keep you awake later. Good luck.

  • My heavens 40mg...I'd be buzzing even more. I'm on 20mg and can't drop as the pain has returned. Such a difficult juggle.

  • i coped with 40mg, it was the 3 x 1,000 mg over three days that was the problem. One on Monday, Tuesday, miss Wednesday then another on Thursday. Wednesday was awful. Woke up feeling like smashing everything up, but eventually settled down. Thursday I was dead beat but perked up as soon as I had my third infusion.

  • I take 3/4 of my daily dose in morning then the rest at lunch. BUT THEN I depend on Tylenol PM for sleep! Splitting the steroids gives me the energy for the evening, which I need when I get home from my full time job! It is a vicious cycle, I know! Good Luck!!!

  • Thanks for your replies. I take first, first thing in the morning...the Rheumy nurse rang me back, bless her, and said it can be a bumpy ride off steroids and if I had amitryptaline to take that. At least she was honest. So amitryptaline it is. Luckily I respond well to it and even a 5mg dose helps me drop off and helps with the pain.

  • Hope you sleep tonight! Mx

  • Hope you have slept better last night. It must be very difficult with young children.

    I also find I do not sleep as well with prednisolone. Finished a course a week ago. Started to flare again but was sleeping through the night. With pain relief though. Had a depot injection yesterday was really tired all day. Last night kept waking up and again awake early.

    I always take my preds first thing too.

    I find I have more energy when on them and the pain and stiffness is much much better. The trade in for me is good but I do not have young Children. I sympathise with you and hope the amitripthaline works.

  • Hi, I'd ask if it was possible for you to take Arcoxia, which is an old drug for gout. I have taken it for years and I wouldn't be without it. It reduces the inflammation dramatically for me & therefore I don't get the pain, therefore I was able to come off the steroids, therefore I didn't need to take a sedative to counteract the steroids. I also take a biological drug so am very lucky/grateful. Worth an ask at the GP's?

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