IMPORTANT INFO RE PRED

[Aamar]

Back at doc today. Told her I still had symptoms after 10 days on pred and that maybe 15mg wasn't high enough. She said NICE guidelines only allow 15. Told her about this forum so she went online and found an article from society of rhumatologists which indicated dose could be as high as 25mg. Anyway, we agreed on 20 for me for now - the insomnia side effect is exhausting me so was worried it would get worse with a higher dose, and the weakness. Will repirt on progress.

[Hidden]

Well done for teaching the doctor! It may well impact sleep still. Unless its nights and nights it won't help but if you try not to get anxious and relax into it all and rest it'll not be so bad. 🌻

[jinasc]

Yes and you can read them as well:

British Society of Rheumatologists: Diagnosis and Treatment of PMR. They also have them for GCA.

They can also be found on the PMR & GCA UK website, the charity which runs this forum.

or just click on this link:

pmr-gca-northeast.org.uk/us...

Knowledge is Power and we all need it.

[YuliK]

Aamar. hi there

As you reduce prednisone you will find that you will have no problem sleeping. I was also finding falling asleep a problem when I first started Pred.

Now I am on a low dosage of Prednisone, 6mg, I can sleep 15-20 hours some days.

YuliK

[HeronNS]

Do all the things you normally would do when attempting to get a good night's sleep. Have some outdoor exercise sometime during the day. Do not exercise too close to bedtime. Avoid screen time before bedtime. Don't eat a heavy meal late in the day, but don't go to bed hungry - try a small snack near bedtime, and perhaps take a dose of your recommended calcium supplement then (about half an hour before you lie down. I like to eat a little plain full fat yoghurt with a calcium capsule). Consider if there is anything about your sleeping quarters which stops you from getting to sleep, maybe your room needs to be darker, or quieter, or warmer, or cooler....

[Aamar]

Thank you all once again. It's so good to hear from people who are living/have lived through PMR - so much better than reading information leaflets!

[alvertta in reply to Aamar]

Try 1 mg melatonin at bedtime. Helped me when I was on 60mg.

[PMRpro Ambassador]

Recommendations are just that - there is NOTHING to say it can be ONLY 15mg. Well done you for educating!!

NICE is usually rubbish - this is far more use:

rheumatology.org/Portals/0/...

and written by people who really DO know...

If you struggle to sleep at night - try to at least lie down and if possible nap during the day.

[SheffieldJane]

I started at 20 mgs. I was prescribed 10 mgs of Amitriptylin to be taken an hour before bedtime. This bought me at least 4 hours consecutive hours sleep in the restless early days.

[GlynisE]

I must be a rarity but I sleep like a log. I also usually have a siesta in the afternoon too.

[alvertta in reply to GlynisE]

Lucky you!!

[Hellyowl]

Unless you have to be up early to go to work why not go with the flow. Enjoy that quiet time in the night to listen to some music or a podcast. Read books. When I was on 60 mg I used cook and bake in the middle of the night. Then if I was tired in the day it was done. ( I was working so tiredness was an issue) but I found that not stressing and trying to get some rest in a pleasurable way helped a lot. Especially with the psychological side of not sleeping.

[katiemills]

Well done you for putting your GP straight ! I started on 15 mg , then 25 mg then 30 mg . My GP prescribed zopiclone to help me sleep. Now I've tapered to 15 mg I manage with nytol and CBD oil.

[HeronNS]

What Hellyowl said. Until I learned to fall asleep at the drop of a hat in the last couple of years I was a bit of an insomniac all my life. Not really a big deal. I'd get up after trying to fall asleep for a time, read, hardly ever screen time (although I found Patient forum in the middle of sleepless night in early pred days and felt I had fallen among friends) and would generally nod off again in a comfy chair. Seldom bothered going back to bed. Sometimes I realized I was a bit hungry and would eat something, maybe a couple of crackers and some water, nothing much.

[fmkkm]

So, I noticed wine in the late evening disturbs the quality of my sleep as well as screen time too close to bedtime. I drink a cup of sleepy time tea and keep soothing books next to my bed. Mindfulness meditation helps as well as pink noise. If I wake up in the middle of the night it’s usually for a bathroom break but then it can be more difficult to get back to sleep.

I have a Psalm memorized that helps to relax me.

The first year of GCA was bad, 3 hours a night, better sleeping now after 3.5 years.

💤 😴 fm