Insomnia and weight gain

[GracieSimp]

I’ve been diagnosed with GCA. Started 40mg of pred which stops me sleeping - max 2 hours a night. I’m also shaky and dithery and feel just odd all the time. Doc prescribed sleeping pills- am nervous taking sleeping meds as it’s a slippery road. Does sleep deprivation improve as pred is reduced. Also Is it inevitable I’ll put on weight and get a moon face. I have upped my exercise and am dieting .

[castingcollectives]

Yes I still don't sleep more than 2 or 3 hrs on 30mg from 6mg also very trembly.I also have fat Face although have lost weight.Muscle just disappears but will get better as you come down. Just remember it's all temporary and try and stay positive I know it's hard.

[castingcollectives in reply to castingcollectives]

Meant 60mg not 6mg!

[GracieSimp in reply to castingcollectives]

Thanks - hopefully it won’t last too long!

[SnazzyD]

Yes, had all that at those levels. I had to move in slow motion when I was on 60/40mg. I didn’t worry that it was happening and just lived with it which made it less stressful. Afternoon naps were a godsend so I didn’t worry about waking at 4am, however I wasn’t able to work which made looking after myself easier. I gained no weight because I cut out completely bread, pasta, flours, cakes, rice etc. Ate tonnes of food due to hunger attacks but only if it was fruit esp berries, veg or protein. My HbA1c sugar test never got above 5. Moon face comes whatever because what fat you do have is mobilised to face, neck, neck hump and middle. I grew my hair longer and embraced having fewer wrinkles. It reduces slowly and noticed the most difference after 10mg.

[Marijo1951]

I had the terrible insomnia for a long time and learned to embrace it. I took the opportunity to watch a lot of (not very good) old British films that I would have been ashamed to be caught watching during the day and did loads of knitting - nothing complicated, but very useful. I finished a number of children's jumpers, adult hats and scarves and an adult-sized blanket for charity. I think one thing that makes it difficult is that it's counter intuitive to have insomnia when we are also suffering from the deathly fatigue. But somehow sleep does come more easily in the afternoon so, as SnazzyD says, it's a good idea to have a snooze then.

Well done for taking practical steps to ensure you don't put on a lot of weight. I gave in to the rampant hunger and put on 20 lbs. I'm with Slimming World now and combining their plan with a low carb approach and the weight is melting very slowly. Oddly enough so far I haven't developed the moon face and back hump - the fat all accumulated elsewhere...

[GracieSimp in reply to Marijo1951]

Good to hear you didn’t get moon face as weight can be shed off body but not from facev

[SheffieldJane]

You are doing all the right things GracieSimp. Don’t worry too much about having help to sleep. It is an abnormal, on steroids, you, that’s being treated. I found that 10 mgs of Amitriptylin, taken an hour before bedtime helped my sleeping enormously.The weight gain and the moonface can be controlled by drastically cutting carbs, according to the good dietary advice on here. My face seems to have gone down naturally as I reduced Pred.

I have never been on the GCA doses but I can imagine how it must feel. People have said that it settles over time. The main thing for now is that you are safeguarding your precious eyesight.

[GracieSimp in reply to SheffieldJane]

Thanks - what level of steroids have you been taking and for how long?

[SheffieldJane in reply to GracieSimp]

3 years PMR, started on 20 mgs. Struggling somewhat since 7 mgs reducing slowly to 5 mgs. Back on track today, managed 5 mgs yesterday and today. Slept like a top last night.

[GracieSimp in reply to SheffieldJane]

Good

[DorsetLady PMRGCAuk volunteer]

Hi,

Your sleep should improve as you reduce the Pred. Mine lasted about 2 months on a starting dose of 80mg and then 6 weeks of 60mg.

I took otc sleeping aides about every 3rd or 4th night -suggested by GP. Enough to get an occasional good night, but not too many to get addicted.

Try not to worry about it, and just fill your time with something else. If you’re not working, you can catch up with 40 winks during the day.

The shakiness/feeling odd etc is just the large amount of Pred, your body will soon settle.

Moon face is pretty much par for the course unfortunately, but cutting down on refined carbs will help with weight.

[SheffieldJane in reply to DorsetLady]

I remember your cheekbones popping back in your new photo!

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Thank you! I think! 🤣😂

[SheffieldJane in reply to DorsetLady]

I was green with envy!

[Hidden]

Hi Gracie

Welcome to the Group if this is your first Post 💐

Yes, unfortunately the Steroids can keep you awake & long into the night too!

As Marijo says watching old Movies is a good way of passing the time.

I’ve not been as high as 80mg as l have PMR but l did have Dexamethasone added during Chemo & Boy, Oh Boy was l a handful, couldn’t sleep, on the go all the time, On Line Shopping +++ & luckily friends elsewhere in the world so could chat with them On Line!

What time do you take your Pred & do try the Sleeping Tablets as it will only be for a short time.

The other ladies have given you good info re the Moon Face & the lovely little hump on our back.

Kind Regards

MrsN

[SnazzyD in reply to Hidden]

Oh yes, Dex, I remember. One time I was trying to make sandwiches in bed but without the ingredients. Luckily in 2004 online shopping wasn’t as slick as it is now.

[Hidden in reply to SnazzyD]

There are days when l could just do with just one tablet of Dexamethasone & l’d soon catch up on anything that needing doing 😉

[SheffieldJane in reply to SnazzyD]

That is such a sweet image SnazzyD. You must have been hungry.

[GracieSimp in reply to Hidden]

I take at 9.00 in morning

[Cyclegirl54]

Hi there,

I take one of my two daily calcium/vitamin D tablets at 9 pm and find this relaxes me for bedtime. Might be helpful for you to aid with sleeping.

Re upping your exercise: can make it all worse! I’ve ditched the gym as can’t manage it now but try for a daily short walk to keep active. Best bit is coming home to a cup of tea and a sit down!

Take it steady 🌸

[Hidden in reply to Cyclegirl54]

Cyclegirl Hi

Have we discussed the benefits of taking Calcium/Vit Tablets at night recently? If so it could do with its own Post......

[Cyclegirl54 in reply to Hidden]

Hi , I can’t remember ( my excuse Pred head ! Lol!🙃) I just found by chance taking the Adcal made me sleepified!

[Lee1945]

I can only comment on my experiences. Yes, great weight gain, insomnia, moon face etc.

Do take the meds to help you sleep.

It does seem like forever BUT when you do reduce and reach a much lower level, the weight will gradually come off.

Try to eat healthy foods and walk every day. That should be much easier now that the weather is improving.

PLEASE be guided by your rheumatologist!! He/she is trained to deal with this.

My GP moved me back up by 1 mg per day and another in the practice told me to move back up to 10 mg per day.

My rheumatoligist was furious!

I am finally down to 3mg and slowly tapering.

Although this forum is very useful, not all advice is good.

My rheumy said he did not want me to have a yo-yo effect, going down and up again - it is very important to follow the guidance of your rheumy.

Although it is hard and can be frustrating at times, you WILL get through this. X

[SheffieldJane in reply to Lee1945]

It would be a useful debate to have if you see something you disagree with. I can guarantee you won’t be alone. For the most part, regular contributors seem to be singing from the same sheet. Our real experts back their posts up with medical research documents which is so helpful.

[EdithWales]

It’s very difficult when you have shared care with your Rheumatologist and GP if you are being given different advice. There will always be a problem if situations change and the Rheumatologist is not available.

Have you a specific example of advice on this Forum not being good?

There is a rider at the bottom of every post from HU saying it doesn’t replace the relationship between you and doctors or other health professionals nor the advice you receive from them.

Well done for getting down to 3mgms

and thank you for your encouragement