I really recognise all of this, especially the lack of power over the voracious appetite. It reminded me of my pregnancies where I routinely gained 2-3 stone and once had to resist biting into a raw joint of beef, dripping with blood. The baby was perfectly normal thankfully.You will have read the low carb advice on FAQs and the Internet is teeming with recipes. I have found home made soups filling and satisfying. Little and often seems to help keep a lid on the hunger. Drinking plenty of water too.
The hair thing is odd. I am almost hairless except for my peach fuzz face and the alarming odd course black hair. I remember threads about all the remedies people used to remove offending hair - have a search.
Walking is a good exercise for us and I found a Fitbit very motivating - the sense of achievement when I reached 30,000 steps was amazing. I only walked round our leafy streets, sometimes pushing a pram with my grandson in it until he dozed off. Yes it is lowering, yes it does wear off, yes it does need some help. Good luck!
I eliminated cArbs and filled up on veggies etc and that helped keep the weight off, very strange though once off the pred. That’s when I gained weight,soon as I relaxed about weight
I have been treated for PMR for the last 6 years. I am sure this is a big part of it. I was able to get down from 40 mgs of Pred to 10 mgs, within a matter of weeks. I am possibly fed up at present. I have developed Pred side effects. I am really glad that we have another option.
I walk less than I am sure I could train myself to do, to be honest Constance. I have been afflicted by a lazy, malaise this year. My second daughter and children joining her sister for a permanent life in Australia was a body blow and once you let the discipline slip it is hard to get back into the groove and of course shielding makes it all too easy to stay in or drive from A to B. My new year resolution must be to start going further afield and fishing out the Fitbit again. I could site the poor old knees but it wouldn’t be entirely honest. No more excuses. 🚶♀️
Sorry to hear you're not doing so well Jane. Soooo hard for you having to face yet another blow of "losing" your second daughter and family to Australia. At least the world is "smaller" now, although flights are expensive. Years ago if your children left England most couldn't afford to visit them!!
Hope you don't get too depressed. At least you will see them regularly by Skype, etc.
Head up - you'll get there. Treat yourself to forbidden fruit for a few days. 💐💐💐
Thank you for the bracing words Constance. As Dorsetlady will tell you, our families have only just been allowed to visit. It’s been 2 years! I’ve got number 2 daughter and family for Christmas. It hasn’t really sunk in yet.As I said on another thread, I went to the Cinema yesterday, it was almost empty, it cheered me up no end.
My advice is don’t wait for the dose to drop as the magic bullet for weight loss. The reasons are that you may be one of those like me where lower dose didn’t help as much as expected, also you have diabetes to worry about and an awful lot of weight can go on in the next couple of years if you don’t start now. It’ll be harder when if your self esteem is even lower and it seems like a mountain to climb. Pred demands more than the normal healthy diet because of the way steroids affect your metabolism. The more carbs you eat the more on a roller coaster you get. The great news is that you can do something now. I started on 60mg and spent my time fantasising about food. What I and others did do was cut out all pasta, potato, rice, flours, maize, sugar. Eat protein, fats (especially veg oils) and loads of veg with some fruit. I didn’t put on any weight and my blood sugars were fine. The hair and face happened anyway but that really does reduce with dose. Very low salt really reduces puffiness from fluid retention, another Pred thing.
Cramps - magnesium (tick) and lots of foods high in potassium which are easy to look up.
High doses do make one feel a bit mad, sweaty, buzzy, weak but unable to rest and out of control. It does get better and I kept telling myself it wasn’t me. Keeping hold of that weight and controlling the boom and bust blood sugars that make one so hungry, really helps.
Your weight will go down when you lower your dose of pred. As for hairy, yes I had that, much to my horror, I use imac cream, it’s not as bad as it was now I’ve reduce the pred.
I really relate to you , i to have put on 2 stone very quickly and yes i just could not stop eating ! Yes had moon face , not hair though but lots of other terrible side affects , Sweating being one of the worst ! any time any place ! also the tendinitis is sometimes unbearable ! I have not yet managed to lose any weight ,lots of reasons not just PMR, not even thinking of tackling this very big problem atm ! But i can tell you that lots of things start to improve the lower the dose, My moonface is not as bad, my eating is under control, no i have not lost any , but on the positive side neither have i gained anymore ! My tendinitis is not as painful and less frequent ! and im not getting so many sweats ! Im trying to get to a place where i can do something about my weight ,but have been in such chronic pain with a flare that have to get the pain sorted out. Im getting there ansd so will you in your own way. Im going to start to lose weight in the new year , until then, i would not worry to much , just concentrate on getting better . Best wishes Viv.🌷
Low-carb, High-fat Mediterranean type diet is the way to go. Eliminating carbs has an amazing effect on appetite - after just 24 hours without carbs I had NO food cravings!(Carbs CAUSE the cravings, and blood-sugar spikes) - this was so new to me, with my fixation and belief in 'Low Fat'... I still need to watch calorie count, and at only 1200 calories per day its not too generous, but I have found ways of enjoying it, and I've lost two-thirds of the 2st+ I gained, the moon face has reduced loads and the whole food and hunger issue is sort of under control. I go 'off-piste' now and then, and have a forbidden foods night, but then I do pay with 2 or 3 days of discomfort...proves the point to me!As PMRpro has often suggested, the Michael Mosely 'Fast 800' diet and recipe books are really useful! -sometimes available on Kindle daily deals for around £1, but worth buying as book...I'd get 'The Fast 800 Easy' first.
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