Just a question

[morrison]

Has anyone when upping steroids by 3mgs had the terrible hunger pangs again. Came from 10mgs to 9mgs. Alternating from 1 day to the other. Next week will be at 8mgs to 7mgs alternate days. Just can't stop wanting to eat. Any suggestions would be welcome. Xx

[SheffieldJane]

Yes I noticed that. The thing is don’t satisfy it with anything sugary, it just gets worse. But have something, you’re only tiny. 😄

[Soraya_PMR]

A bit confused here.... why have you upped pred by 3mg if you’re reducing? Or put another way, why are you reducing pred if you’ve had to go up 3mg?

I had ravenous hunger at doses over 15, but now at 8 it’s mostly abated. Stick to protein and fats which are far more satiating. Sugars will awaken the insulin beastie and you’ll be hungry again in next to no time.

[snis in reply to Soraya_PMR]

true i had to stop eating the sugar in the end

[morrison in reply to Soraya_PMR]

Had to go up due to stress and fatigue. Went up from 7mgs to 10mgs. Now trying to taper back down to 7mgs. I crave anything savoury, not a sweet tooth. X

[SnazzyD]

Hello, I agree with the last two; stuff your face but keep clear of carbs.

And yes,what is the rationale with the dosing ups and downs?

[snis in reply to SnazzyD]

yes true its the carbs

[Telian]

Yes, I agree with what's been said so far, find something healthy you can snack on, I like celery sticks and for indulgence a very little soft cheese - and an odd grape, careful with too much fruit though - if it gets too much I suck a Gaviscon, as the hunger often feels like heartburn (I don't suffer with heartburn) it helps to get through these stages. I also drink boiled water, you can add lemon, it's smoother than cold water more satisfying somehow!

Good luck!

[snis in reply to Telian]

yes ive been eatingtoo much fruit put weight on again this week

[Telian in reply to snis]

Hi snis

It's all in moderation - as they say - I find myself grazing all day long - little and often - and it suits me, I don't put weight on.

I like to eat a good breakfast with protein, if I've only had the usual cereals I still dry fry an egg afterwards! I find this satisfying and helps me through until late morning (morning is my hungry time) then eat early lunch then it's mid-late afternoon eating so dinner is something light later - no set meal times for me at the moment, I have to eat when I'm hungry as I feel odd, I'm not diabetic.

Best Wishes

[Rimmy in reply to Telian]

'Hunger' feeling like heartburn IS likely just that - acid shooting into a stomach which doesn't contain any or much food which will easily absorb it. Eating less carbs is the best thing to do when taking Pred but this can be a 'side effect' of this kind of diet - in my experience anyway.

[Telian in reply to Rimmy]

Thanks Rimmy, what you say makes sense, I'm not an expert in diets so need direction occasionally - knowing what causes what is half the battle for me..

Not usually a heartburn sufferer and with the Gaviscon helping, thought it was that. Am not eating carbs, is that why I'm hungry? I do feel better not eating carbs, they bloat me anyway, always have even before pred but initially I was compensating with sweet stuff which I've now stopped. Instead I eat protein with veg/salad, perhaps a bigger portion..

To add to the mix I've recently been diagnosed with a small hiatus hernia, they said not to worry about it...they asked me if I suffered with any heartburn but not then. I am reducing pred so that's probably why - I always have a rough ride when reducing..

Much appreciated...

[Rimmy in reply to Telian]

Hi again Telian

I know you say you don't have a 'heartburn' issue but it is possible that the hiatus hernia is causing some minor reflux/heartburn - I also have one of those and it has caused that for years - but I control reflux/acid production by using a PPI (or proton pump inihibitor - Lansoprazole) drug which quite a few people on pred seem to take - although many think it has too many side effects. But it has worked just fine for me reducing stomach acid - even for years before GCA/PMR - but obviously it is not for everyone and there are alternative effective drugs which can help if this is even part of your problem. I agree carbs don't always make for good digestion either - but the issue of having enough 'bulk' in your stomach remains - although small regular meals may help - again it is finding what is 'right' for you.

[Telian in reply to Rimmy]

Hi Rimmy

If it is the hernia then only time will tell, it's come on more while reducing as I said but maybe it's a coincidence - I've taken Omeprazole since diagnosis of GCA/PMR 4+ years now. I'll try to bulk up my meals and see what works for me, thanks for the advice, much appreciated.

[Rimmy in reply to Telian]

Best of luck with it all !

[PMRpro Ambassador in reply to Telian]

You probably need MORE of the things you do eat. Nothing wrong with a decent chunk of cheese. It's the CARBS not the calories that cause weight gain.mIf you cut carbs you don't need to worry about the calories (within reason that is). And drinking more also helps - often we feel hungry when really it is fluids we need.

[Telian in reply to PMRpro]

You're probably right, hubby says I don't eat enough but I don't go hungry either. I have an aversion to some dairy eg cream, full fat milks and cheeses - I do love cooked cheese - it just doesn't like me - hence the thing about a little lactose free soft cheese, that's a real treat - block lactose free should be okay then as it still has the fat content. I do try to keep my fluids up but maybe not doing it, will make a conscious effort.

I'm getting the drift so here goes, many thanks.

[Soraya_PMR in reply to Telian]

“ I like celery sticks and for indulgence a very little soft cheese - ”

Why? Treat yourself, have a goodly dollop of soft cheese and make sure it’s full fat. You deserve it, and it won’t increase your weight, honest!

[Telian in reply to Soraya_PMR]

I believe you - honestly. I realise what the 'celery sticks' sounds like but I'm not a dieter just like the clean fresh taste, will take on board what's been said and hope for improvement. Already tried some full fat cheese and I've remembered why I don't eat it - my mouth tastes like s..t

Cheers Soraya

[PMRpro Ambassador in reply to Telian]

Don't go straight to the full monty - mix in smaller amounts to find the texture you still enjoy.

Celery is one of the things I detest - can't really even thole it in soup!!!!!

[Telian in reply to PMRpro]

Good tip..

I'm like that with peppers - If you take them out of the stew I can still taste them plus they make my sinuses painful and swollen - yuck - I hate them so much I shudder when I see them in jars in the supermarket!

[PMRpro Ambassador in reply to Telian]

Recipes using green bell peppers are an invention of the evil one - red, yellow, orange are acceptable though. My SIL used green peppers in every dish she could insert them into - and ALWAYS when we visited...

[Telian in reply to PMRpro]

I'm shuddering...

[snis]

Hi there ,Yes the hunger pangs are awful !!I'm in Slimming World and have put on 16lbs in 6 weeks ahhhhhhh .....I was doing really well with my weight loss having lost 4.7 stone ..I told my Rheumatology nurse she told to stop going to class for a bit and chill and saif the weight will come off again as soon as I finish the steroid course ..so hang on !!!all the best ..Rhian.x

[SnazzyD in reply to snis]

Really well done with the 4.7 stone. Perhaps, if it were only a case of vanity. The reason I went to extremely low carbs was more to avoid the risk of diabetes which is a risk with Pred, so I’m surprised she said this. Also, losing a large amount of weight is harder and more more soul destroying if it has got out of control. I also think it has played a part in my recovery. Waiting for the Pred course to finish is a case of, how long is a piece of string?, to most on this road.

[PMRpro Ambassador in reply to snis]

The trouble with SW is that it allows a lot of carbohydrate - and when you are taking pred it changes the way our body processes carbs, causing spikes of glucose to be released into the blood, triggering insulin production and it becomes a viscious circle and the insulin makes you put on fat with the excess blood sugar. Cutting the carbs drastically helps avoid that.

I'm assuming you have PMR? I hate to break it to your rheumy nurse (and possibly you) that you aren't on "a course of steroids" as you might be with other rheumatic disorders while your DMARDs kick in again. Pred is the DMARD for PMR - you will be on it for the foreseeable future, at the very least 2 years and the average length of pred for PMR is just under 6 years. If you continue to gain weight at that rate you will have put all you have lost back on very soon.

I am unusual - but I have had PMR for 14 years and have been on pred for nearly 9 years. Most people on the forum have been on pred for more than a couple of years. This isn't a journey that takes a few months and you are off pred. Sorry.

[Singr]

When I had flare and had to increase I nearly ate my entire kitchen contents of carbs. I ate half a packate of buscuits like I was starving. Could not control it. Was quite upsetting.

[snis in reply to Singr]

true it happened to me

[Soraya_PMR in reply to Singr]

If you eat carbs, you’ll crave carbs. Particularly if it’s processed carbs like biscuits, which is akin to eating sugar by the teaspoon!

Sugar is absorbed really quickly, straight from the stomach into the blood stream. The spike in blood glucose leads to a spike in insulin. And insulin then converts the glucose and stores it in your liver and builds up your visceral fat (that in your abdomen and around your organs). Insulin also blocks fat breakdown. Then you have the glucose crash triggering hunger for more carbs.

Sugar (sucrose) is 50% glucose and 50% fructose, and fructose interferes with your hormones that control appetite. You don’t feel full, and become hungry again much quicker. Fructose also induces production of inflammatory cytokines due to cell damage. When we have PMR we have enough IC’s, we don’t need more!

So if you feel hungry eat fat, this has the least effect on insulin, or protein which takes twice as much energy to digest. Both will leave you feeling fuller for longer. Fibre and complex carbs will slow the digestive process and won’t result in severe spikes of insulin.

Think of it this way SUGAR IS AN APPETITE STIMULANT!

[Hidden]

You probably do need to increase fat and fibre. I have the odd day where I am starving all morning. It drives me mad and sometimes I eat my main meal at lunchtime to sate it a bit.

If you can have peanut butter or hummous with Lot's of crudités it's good. Whilst fruit is recommended in small doses I (and my diabetes nurse) are quite happy to have apple with peanut butter. The fat slows down the release of fructose. In the past I lived raw cauliflower and broccoli with houmous but I seem to be a sensitive soul with raw stuff these days.

[DianeMills]

Hungry all the time been on steroids for 7 years on 1.5 mg now staying where I am on a maintenance dose now and happy. Was size 12 when started now size 16 never mind look good at age 66 so I’ve been told haha.

[morrison in reply to DianeMills]

Good to hear that you're doing well, but not so good in you're 7th year. X

[DianeMills]

It takes a long long time to get down to zero. So frightened to get lower than my 1.5 mg because headaches start,worried about giant cell, so the doctor said I’m fine on this very low dose.

[morrison]

You have done well. Just watch out for any persistent headaches. Nice to know that survival can be obtained in the long run. Everyone is different. X