insomnia

[Missbisous]

hi Ive just been diagnosed with GCA and on 40 mg of pred and I can’t sleep ! I’ve never had trouble sleeping in my life and find the fatigue crippling. Does anyone have any tips or remedies to help me please. I take all 8 tabs after breakfast and don’t have caffeine

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Unfortunately it’s a side effect of Pred-and probably worse on higher doses. But does usually get better as you reduce meds.

Have a look at this -and others replies to it -

healthunlocked.com/pmrgcauk...

As you are new also have a look at the FAQs, maybe starting with this one -

healthunlocked.com/pmrgcauk...

[Missbisous in reply to DorsetLady]

Thank you I will have a look x

[SnazzyD]

Yes, been there. You are up against it with Pred and sleeping I’m afraid. Some people try Amytriptyline from the doctor. I feel worse on those kind of things so just forgot the idea of a solid 8 hours at night and existed on naps during the day. It gets better as the dose drops. If you try natural remedies make sure you check with the pharmacist and online because of the steroids.

[Missbisous in reply to SnazzyD]

Thank you. I’ll have to try napping and try to slow down a bit ! X

[SnazzyD in reply to Missbisous]

Slowing down is essential, you just can’t go back to life as normal I’m afraid. Your autoimmune condition is still there, it’s just the Pred makes it seem like it has gone away. Also, 40mg is no small amount and will make you feel wired, thus encouraging you to over do it.

[Missbisous in reply to SnazzyD]

Yes I’m afraid I thought I could just take the pred and carry on but my body has other ideas. I’ve been told to be kind to myself by the rheumatologist. !

Also has anyone put alot of weight on and got the moon face Iv e been reading about? I’ve just lost 2 stone recently and really don’t want to put it back on !

[PMRpro Ambassador in reply to Missbisous]

Some do, a lucky few don't. But cutting carbs drastically should help. Pred changes how you metabolise carbs and causes the liver to release random spikes of blood sugar from the body stores in liver and muscle which also then triggers production of insulin - and it makes excess sugar into fat stores in specific places, face, midriff and back or your neck especially. Cut all processed carbs, added sugar, rice, pasta and root veg and limit fruit - lots of sugar in some fruit. That should help avoid weight gain and the risk of developing steroid-induced diabetes.

I gained weight with PMR and with one form of steroid but on a different steroid I managed to lose 35lbs of PMR and steroid weight even while on 10-15mg pred. It can be done. And very well done on the weight loss.

[DorsetLady PMRGCAuk volunteer in reply to Missbisous]

Yes I’m afraid I thought I could just take the pred and carry on but my body has other ideas. I’ve been told to be kind to myself by the rheumatologist. !

One of the main reasons I wrote my information post -at least your Rheumy was sensible-many aren’t told anything much…

[Sophiestree]

I was exactly the same. Went from being a good sleeper to being awake at silly o'clock every day. I think you just have to go with it. Nap when you can and ride it out. It will get better once you reduce but right now you need 40mg. I had a 3 day pulse therapy of I gram per day (3000 mg in total) and then 40 mg... I was flying around the house like a mad woman, over did it because of that and all the muscles in my legs and hips objected and I was in agony for 4 months unable to do anything and feeling that this was not a life I wanted to be in... It does get better but you just have to respect it. Tough when you're going through it, but remind yourself it will get better over time.

[Missbisous in reply to Sophiestree]

Thank you. I’m not one to stay in during the day but this is certainly making me sit down more. X

[PMRpro Ambassador]

And hallelujah - the Related Posts are back with 10 links to previous posts on Insomnia! DO have a look at them too, Just click on the link to open each one at a time.

[Fatsiajaponica]

Welcome and sorry that you need to be here but you are in an excellent place in this forum. Like others when on 60/40mgs was wired, couldn't stop talking but had already learned my lesson when first diagnosed with PMR on 20mgs, just carried on as normal and paid for it the next day. Roundly told on here (kindly) that this was no way to carry on with PMR. It takes time to understand this illness and in a way there is some grieving for the loss of the old active self when the realisation hits. It gets better and when stable on the meds a compromise can be found. Be prepared for some ups and downs but you will be supported here through it.

Take care and hope you will be feeling better soon.

[Missbisous in reply to Fatsiajaponica]

Thank you so much - I’m very glad I found this site. It’s been very helpful x

[Fatsiajaponica in reply to Missbisous]

Also meant to say please keep us updated on how you are getting on, we will be thinking of you.

[piglette]

I am exactly the same. I could fall asleep in seconds. I discovered the BBC World Service and have learnt all sorts of fascinating information.

[Missbisous in reply to piglette]

Yes it was suggested I listen at night very quietly and might drift off ? X

[piglette in reply to Missbisous]

The only trouble is I always drifted off in the middle of a really interesting programme!!

[Gangley]

Missbisous, I agree with all of the above and loved the "silly o'clock" comment. That was when I changed my bedding because of the night sweats (I was on 60 Pred). Also had the "moon face" but one day over coffee my friend said "you don't have any wrinkles" - no she's not blind, but moon face took them away. It all takes time and sounds like you have a caring rheumy. Good luck.

[Missbisous in reply to Gangley]

Ha ha one advantage of moon face ! Haven’t had any night sweats yet. - when do they arrive ?!!

[Gangley in reply to Missbisous]

Mine started 2 days after starting Pred and lasted for 2 months. Notice in my reply I use the past tense - there is hope at the end of the tunnel!

[Angelsmummy]

Am afraid the high doses of pred does alter sleeping,in fact EVERYTHING!When I was on 60 mg,I was awake for 48 hours,never had such clean tidy cupboards etc,and was cooking through the night .My grandson called it “ Nana Nocturnal Cooking”.On the third day I just crashed and burned.AWFUL!As I got lower on pred,it lessened.Now apart from 2am Pred ,sleep reasonably.Moon face seemed to go about 10 mg.Also losing the Elvis sideburns,and Poirrot moustache!🤣Still got the awful curly hair but hey ho,worse things happen at sea eh?Very good luck to you,you are in good hands here,as we all are.xx💐😜🌼

[Missbisous in reply to Angelsmummy]

Omg elvis sideburns ? Poirrot moustache and curly hair. ? No one’s mentioned these side effects. What’s happening ?!! X

[PMRpro Ambassador in reply to Missbisous]

When I was on Medrol I had a superb black beard (I've been white since I was 40!). Never happened with prednisone or prednisolone. And I have wonderful curly hair - I decided to embrace it and grow it longer and get loads of compliments about it. The length weighs down the frizzier bits.

[Angelsmummy in reply to PMRpro]

Had a REAL bad day today ,dog at vets,up worrying all night,but when I saw your post about your black beard I laughed and laughed SO much,OH thought I had gone mad!Thanks SO much for cheering me up,you made my day!xx 🤣🤣🤣🤣🤣🤣💐😜

[Angelsmummy in reply to Missbisous]

Don’t be too alarmed,I am exaggerating a little!🤣But I DID get sideburns,right down to chin,and had a moustache,even though it didn’t curl up like Poirrot!The curly hair,I thought it came from Leflunomide but if PMRpro got curly hair,perhaps it was the pred.I don’t like the curly hair,but the Pred keeps me safe so I will embrace it as PMRpro does!Just try not worry about anything cosmetic,just concentrate on healing yourself inside,you WILL get there!xxx💐💐😜👍

[Missbisous in reply to Angelsmummy]

I wouldn’t mind curly hair but a beard ha ha. Oh my. Xx

[Angelsmummy in reply to Missbisous]

Would be great on Eurovision Song Contest!🤣🤣🤣🤣!

[PMRpro Ambassador in reply to Angelsmummy]

Absolutely!!

[Angelsmummy in reply to PMRpro]

🤣🤣🤣🤣😜🦸🏿‍♂️🦸🏿‍♂️

[Missbisous]

ha ha ha