Pred: Hunger/appetite change. Early days, do things get better

Pre PMR diagnosis in early July 2018, I was overweight. First time in my life; I've gained just under 28lbs in past two years. Same diet, hugely reduced activity because of pain and mobility restriction. I've never struggled with weight. Used to be fit, happy and active but now having to review wardrobe options and I understand the increased risks re Type 2 diabetes etc.

Started pred beginning July. Great symptom control. But within days, desire for food is like something I've never experienced. I cook and eat a meal, then WANT the same meal again, immediately because I'm hungry. What's that about? I'm not convinced it's only about the glucose thing. It's like some basic hunger/survival switch in my brain has suddenly gone to 'off' position.

I know I don't need more food than I've eaten. My brain is demanding I continue to eat and eat and eat. I'm not, but I'm wondering, is this a phase that'll pass or an ongoing battle? If this is late onset Prada Willi, I have every sympathy with those fridge raiders.

This, plus an overwhelming desire to just give up and weep, despite the amazing pain control is a bit daunting. Seems the more I learn, the less I understand. I'd appreciate any advice, thank you.

[PMRpro Ambassador]

A lot of the hunger cravings really is just the change in how your body processes carbs - no you may not eat more but your body uses it differently. The pred makes your liver release random spikes of glucose into the blood - which trigger release of insulin and the BS falls suddenly to too low a level - and you body screams for carbs to bring the BS level back to where it should be. The excess insulin turns the excess glucose into fat deposits in the usual places - face, back of neck and around your midriff.

When you can manage to cut carbs drastically you break this constant roller coaster of BS levels - very low carbs means your body turns to the fat deposits to produce energy and uses them up and because they aren't contributing to the glucose spikes you have fewer of the low BS episodes and so you don't crave carbs to correct them. How much less carb you must eat varies - some people need to cut more than others. It does also reduce the risk of developing steroid induced diabetes.

The mood thing is a combination of the pred which affects mood, the PMR which can also be accompanied by depressive mood and the bereavement you feel as you watch your normal self disappearing somewhere over the horizon and you don't recognise what you are left with. It will improve as you get the hang of living with this gorilla

healthunlocked.com/pmrgcauk......

[Hidden in reply to PMRpro]

Thanks PMRPro. I think what I'm trying to understand is whether this is the body sugar spike...

About 15 yrs ago partner was diagnosed as Type 2. We modified diet to increase low GI foods, reduce sugars disguised in cereals, yoghurt, etc etc and the Hba1c has been within normal range for over 13 years. At the time, I can't say I was aware of much change; no cravings or apparent spikes. This doesn't feel like a sugar craving. It's more like I want to devour everything and having done so, still don't feel full or satisfied. I baked a tray of chicken breast pieces to nibble if I felt hungry. The idea being they're low fat, high protein and I like them. After dinner this evening, lean pork chop baked with courgette, red pepper, garlic, tomato purée and chestnut mushrooms plus one medium baked potato, I was ravenous. That would normally be a satisfying meal. I just feel I want food...all the time!

I'll work with it but it feels like my brains hunger thingy is off.

[PMRpro Ambassador in reply to Hidden]

Some people do feel desperately hungry - but my suspicion would be you need a bit more fat and take out the baked potato. The only time I feel hungry is after I have eaten carbs of some sort - including potatoes. (almost) No carbs - not hungry. But when I include carbs I still feel hungry next day!

[Hidden in reply to PMRpro]

I'm rethinking carbs. Given the pred factor, what was ok may not be. I believe you're right with the fat thing. Fat satisfies and if it's natural, it's probably not the demon. I've never gone down the low fat, spreads etc route. 'Low fat' option, yoghurt, creme fraiche means added sugar or even worse, 'sweetner'.

Thanks PMR. It's not so much a learning curve; more a challenging rock face with a precipice or lost grip at every move. But onward and upward nevertheless.

[Valnvaughan in reply to PMRpro]

Great explanation. Thanks

[DorsetLady PMRGCAuk volunteer]

Hang in there, it will, and does get better! I promise!

[Katrinaroper]

When your body Is unable to use the glucose it it's system ...it doesn't matter how much you eat...your body still thinks that it is starving....it's a cruel trick....if you lower your carb intake it can 're balance this error(I am diabetic...pmr...on pred...and am a nurse...but still fat and eat everything in sight!!..I know your pain!!!)

[Hidden in reply to Katrinaroper]

Thanks Katrinaroper. Every little helps!

[Marijo1951]

I started on 60 mgs per day just one year ago (now at 15 mg). At first I couldn't believe the rampant hunger as well as the total obsession with food. I suddenly developed overwhelming longings for the kind of old-fashioned stews and puddings I was brought up on. However as the dosage reduced, both the hunger and the obsession have decreased and I am now eating fairly normally. I do try to avoid sugar and white carbs and fortunately I've always loved veg, fruit and salads as well as the stodge, so I get plenty of those. I look on it now as a 'phase' I had to go through. I just wish I could get also get through the insomnia phase - not being helped at present by these very hot nights...

[Hidden in reply to Marijo1951]

Thanks Marijo. Obsession nails it...I've never been so fixated on food. When, what will it be, what can I eat meantime? I'm gaining a better understanding of what's changed.

[SnazzyD]

Oh that hunger. I started on 60mg briefly then 40mg and I was obsessed with food. I would weep about it literally. Watching my family tuck in to normal food was torture. Going on a no carb/very low salt diet didn’t stop the hunger but it stopped the weight, sugar level fluctuations and it allowed me to eat masses of food to keep the mouth quiet. The only sugary things were a couple of square of 85% cocoa chocolate. I ate so much as long as it was veg or protein with some fat. Once I got to about 25mg I had a small glass or two of wine once a week. They were heaven. I would chop that chocolate up into tiny pieces and savour it. I am so glad I did that because my blood sugars stayed normal and I didn’t gain weight. Below 10mg I’ve introduced a bit more carb but still no pasta, rice, potato and frankly I don’t miss it, apart from chips. I’ve put on a couple of pounds so will go back to watching carefully. I know what it was; feeling a bit less susceptible I have nibbled a bit more choc or a few chips when my exercise level has dropped due to fatigue due to adrenal sluggishness . Taking control in a situation when everything in my life fell apart was also a bonus.

[Hidden in reply to SnazzyD]

Thanks Snazzy. My bad; I always have a glass of red. I've kind of discounted that, but of course there's the carb content...I need to rethink cos with these new meds, that carb content may tip the balance. At least I know it's not just me🍷

[SnazzyD in reply to Hidden]

I wouldn’t say “bad”, just that the goalposts have moved and you’re still searching for the ball. I found initially that the tiniest amount of carb made a difference, even carrot. About the 25mg mark carrots were back. Another thing to watch is salt; man, the fluid retention from even a bit of sauce!

[Purplecrow in reply to Hidden]

Hi, nope, its" not just" you... you are experiencing real cravings...and they will plague you until you can get a grip on the white carb consumption.

i found, if I eat white carbs for breakfast, eg., cereal, bagle, etc...i crave carbs the rest of the day. If I have an egg and piece of fruit (colored carbs), I do well.

Also, the wine...😁 , i try to limit white carbs so I can enjoy my wine without sabotaging my weight.

Once I got hold of the carb thing, I lost the 10 lbs I had gained when I first started Prednisone.

Be kind to yourself, things will get better as you learn "the ropes" of dealing with this new life event.

Remember, this forum is the best source of real information regarding your disorder, and the experts are available 24-7...

Nice to know when you are having a sleep - less night.

Always someone here to answer your questions, or hear your fears...

Kind regards, Jerri

Diagnosed PMR 2013, currently 5 mg prednisone

[Hidden in reply to Purplecrow]

Thanks Purplecrow. That's all sound advice. I'm having to rethink the whole carb approach; what seemed low to modest intake previously is probably too much now. I'm trying to manage expectations too. I'd anticipated this would all be sorted in a few months, but I realise it's a longer journey. Small steps and I've decided to tackle one thing at a time. It's less overwhelming.

I'm going to see GP next week. Some pains are back, upper arms mainly and from what I've read here, I'm wondering if the tapering is too fast. I've gone from 15 to 12.5 and now on 10 in 5 weeks. Then it's dropping to 7.5 in 2 weeks. I don't want the pain back..!

[PMRpro Ambassador in reply to Hidden]

Far, far too fast. 15mg for a month, 12.5 for a month just to start with.

As a basic approach this has a lot to be said for it - the group found it reduced flare rate from 3 in 5 to 1 in 5:

rcpe.ac.uk/sites/default/fi...

[Purplecrow in reply to PMRpro]

Take heed of PMRPro words of wisdom...

PMR is a long haul event, not a sprint to the finish line. If you taper too quickly, you will miss your markers and find you need to return to a higher level of prednisone ....over and over...

Some folks may be able to race through the course....

...but most plod along, carefully pacing tapers, and holding or temporarily increasing doses when they see stressful events coming...or when life throws those curveballs...be they joyful or heartbreaking...

Just sayin......

Kind regards, Jerri

Dx PMR, 2013. Currently 6 mg pred

[Hidden in reply to Purplecrow]

I've learned a lot in the past few weeks Purplecrow. The main lesson being; dump every expectation and start with a blank page.

I think there's some post early pred euphoria. The pain goes, movement returns, life is almost normal. The relief is palpable and it's easy to forget it's only a symptom that's been improved. The systemic disease remains, ready to bite your bum every time you push it. So do one iota too much and you'll pay next day.

It's not easy to accept; I had visions of getting the mountain bike out again, shaking the dust off the wetsuit to do some bodyboarding...tbh, I understand that will come, hopefully, but not for a while. I'm appreciating a walk without pain and getting out of breath. Being able to wind up the hosepipe in seconds rather than minutes. It's very different, but it's progress in the new PMR world.

[Hidden in reply to PMRpro]

Thanks PMRPro; my reply yesterday disappeared into the ether.

I struggled yesterday after standing for around 30 mins in the kitchen. OK, that's a big improvement on pre pred. After 5 mins I'd have burning shoulder and hip pain. Yesterday, bilateral burning in both hips plus upper arms on fire. Felt like a flare.

I checked the link, thank you. I'm going to try negotiating agreed flexibility in dosage. I'm a bit stuffed at present as I'm not on 'repeat' script, just 2 weekly re order. So I don't have any surplus for back up yet. I'll get there though😀

[Smokygirl in reply to Purplecrow]

That is so helpful Jerri, thank you. I am starving and craving sweet things non stop—- after three months of Pred. Starting on 15 now on 12.5

I went straight onto low carb when I started Pred and so far have put on four pounds. I have most of my carb allowance at breakfast —prunes & yoghurt - a slice of whole meal toast and a banana followed by Pred.

It is after a sensible lunch that I start to binge —- raisins , cheese , ice cream —- I just can’t stop. I shall try your eggs for breakfast tomorrow and hope it works! Hugs xxxxx

[Hidden in reply to Smokygirl]

It does help but don't feel like you need to drop banana altogether.... If they are not fully ripe... No black bits... They have about 25% fewer carbs than a ripe medium banana. 40g versus 28g. Obviously it depends how low you want to go with carbs. 40 to 60g seems OK for me but some need 20g or less to see a difference weight wise. Replace ice cream with full fat Greek yoghurt with a few drops of vanilla. Place in freezer and stir every 15mins under it has a texture you are happy with... Or eat the yoghurt. Have some nuts with the cheese.... Or I slice cucumber or celery to have with the cheese to mix texture up. Good luck!

[Smokygirl in reply to Hidden]

Great idea! Thank you! Yoghurt in the freezer now. I need the banana for the loo—- the toast has always helped as well!

Eggs tomorrow!!!

[PMRpro Ambassador in reply to Smokygirl]

Prunes, yoghurt, toast and banana alone would be well over 40g carbs - and for many of us that is too much to lose weight and some would gain on it when on pred.

[Smokygirl in reply to PMRpro]

Yes of course you are right.

I am a SW target member—- just —— but if I put another pound on I won’t be any more! I have always just had the banana on toast ( suits me for the loo!). but did the prunes because of Boron and the yogurt for the Pred. I’m going to give the prunes up and settle for a spoon of yoghurt before my breakfast. So—-eggs tomorrow and maybe the toast? The craving to binge starts after lunch and goes on til after dinner! 😢😢😢😢

[PMRpro Ambassador in reply to Smokygirl]

You maybe need to keep a food diary - a slice of toast is 13g carbs, the banana anything from 30 to 40. You need to be aware and add it all up. It may be a bit boring (or nerdy) but weighing things for a few weeks and seeing exactly what you are eating can be quite revelation!

[Smokygirl in reply to PMRpro]

Good idea. I used to do it on SW but I’ll have to learn carbs. I was shocked at the high carbs in prunes and bananas—- as I don’t touch potatoes or pasta etc I never thought of fruit as being so high as it is all free on SW. I suppose it’s the sugar content.

[PMRpro Ambassador in reply to Smokygirl]

Lots of people don't realise! I do because I have been a biologist all my life!! I do often warn about fruit - it may be healthier carbs but it is still carbs. And for this purpose, it counts. Berries are the best for lowish carbs. Apples and bananas are wolves in sheeps clothing

Careful with pickles too - the liquid often has a fair bit of sugar in it!!!

I think this is a great introduction:

dietdoctor.com/low-carb#learn

and they have lovely pictures to make it easy to remember!

[Smokygirl in reply to PMRpro]

Oh thanks so much, that is really really useful. Just what I need!

Hugs xxxx

[PMRpro Ambassador in reply to Smokygirl]

And I forgot to say - once you remove a lot of the carbs the craving for carbs should reduce. Unless you cheat ...

[Smokygirl in reply to PMRpro]

Oh I do hope so PMR Pro! BTW that Diet Doctor link is really terrific, thank you so much once more. X

[Hidden in reply to PMRpro]

Diabetes UK published a bit of research, still at the animal phase, about how mice could consume glucose and not gain weight. However when mice consumed fructose they put weight on. As I say... Only at animal trials at moment.....

[Smokygirl in reply to Hidden]

How interesting and yet bananas are lower in fructose but so high in carbs—- !

[Purplecrow in reply to Smokygirl]

Hi Smokeygirl. Occasionally I take a dill pickle or string cheese stick and wrap it in a slice of deli meat. Makes a great breakfast or snack, or 2 makes a meal, wIth zero carbs.

Recently I have used protein drinks (30gm. Protein) few carbs. Keeps me satisfied, and protein seems to ease carb crave.

[Smokygirl in reply to Purplecrow]

Unfortunately I can’t take protein drinks or protein bars —- they give me a really bad stomach so it has to be natural protein.

Never thought of a pickle, it’s a good idea, I imagine after that I won’t want something sweet. Roll on tomorrow! Eggs for brekkie, pickles and cheese at 3:00pm binge time!!

Thankyou ! xxxxx

[HeronNS in reply to Smokygirl]

If you are having serious cravings I'm going to suggest something a bit more radical. Try to give up all carbs for a few days. I mean, there are some things you can have, like the carbs you find in a leafy salad, but no fruit, no root vegetables and above all no grains. If you substitute high protein foods like yoghurt and cheese, meat if you eat meat, and eat nuts as well, plus the advice about things like pickles (for me that would be an "eew" but we all have our little quirks) and eat loads of foods which need lots of chewing, like a salad dressed with a healthy oil and vinegar (no commercial dressing or anything with additives or sugar) you may well find after a very few days that your cravings diminish and maybe even vanish. Remember, what you are craving is what your microbiome is telling you to eat. You can relatively quickly change the balance of that microbiome, but I think it takes the willpower to not feed it what it's demanding.

People laugh at me but I did this because I was afraid of developing diabetes. Because I'm thin I didn't give up root vegetables (except potatoes) but, then, I didn't have the same sweet tooth you seem to have. By the end of the first winter on pred, about eight months of this diet, with only occasional bites of homemade scone or a small sweet treat, I found to my surprise that I was craving .... wait for it .... kale! Now I make sure to feed those leafy green-loving microbes every day, and I seem able to have what I want of any foods including rice, potatoes and, still, the occasional small sweet treat. The blood sugar, by the way, did get back to normal although not completely so until pred dose was much reduced.

[Smokygirl in reply to HeronNS]

So interesting Heron, thank you. I could try for two days maybe—— but it will make me very constipated for sure! Then I’ll probably ruin it by eating bananas toast and prunes again as I don’t like to take laxatives.

I love kale too —- especially roasted until crispy in the oven—— but I can’t imagine craving it!!

Our son has been type I diabetic since childhood and he does the 5:2 fasting regime which he says stops cravings but I can’t do that as I must eat before my Pred and then later my vitamins.

I am in awe of your amazing lifestyle which has really carried you through your journey and do aim to emulate you —- you are so strong! Xxxx

[HeronNS in reply to Smokygirl]

I hardly ever ate kale, now I enjoy it several times a week. If you eat enough leafy greens you should not have any constipation. Maybe ease up on the cheese and if you can eat more nuts.

I suggest the raw salads because it really helps to have to spend half an hour chomping through a plate or bowl of food. Really deals with thinking one is hungry! But there are ways to make soups and things using similar foods you'd eat raw in salad, and that makes for more variety.

[Smokygirl in reply to HeronNS]

I eat loads of salads and make my own fab soups and cook home made good food for my OH and myself. Sadly the bingeing has nothing to do with our normal meals!!! I’ve never been like this before although I’ve always had a sweet tooth!

[HeronNS in reply to Smokygirl]

Then carry on with that and avoid your much craved bread and so forth. You are halfway there! You can do it!

[Smokygirl in reply to HeronNS]

Ah lovely Heron! You are so encouraging! And you are right.

Why should I let this beat me.

Eggs tomorrow and I’m going to really try ! xxxxx

[Hidden in reply to Smokygirl]

Here's other ideas for low carb breakfasts......

healthline.com/nutrition/18...

[Smokygirl in reply to Hidden]

Ooooh they all sound yummy! Roll on tomorrow! xxx

[PMRpro Ambassador in reply to Smokygirl]

Why can't you do 5:2? You eat every day, just it requires careful food choices on the 2 days you are eating fewer calories. I did it to reeduate my portion needs.

[Smokygirl in reply to PMRpro]

How can one fast if one has to take Pred after food? I suppose I could take my vits after dinner in the evening but I take my uncoated Pred in the morning after breakfast—-

Our son fasts all day til evening and only uses his long acting insulin in the morning. Then he adds his short acting one for dinner at night.

[PMRpro Ambassador in reply to Smokygirl]

Fasting doesn't always mean not eating at all. The 5:2 diet is based on 2 days with a lower calorie count, originally 500 calories for women, and not on consecutive days. The other 5 days of the week you eat normally. After a few weeks like that your appetite does reduce a lot - or so I found, But providing you choose well with food, even the 2 days or reduced intake can be a lot of food.

Your son is doing something more like interval fasting - eating within a limited time period. Not the same thing at all.

[carolpatriarco01]

I too have the same wanting to eat and eat and eat problem.

It's the prednisone that did it to me.

Also I've gained weight as I cave into these cravings ... feeling sorry for myself...it's the only pleasure I have right now... dealing with PMR. I can say since I've gone from 20 mg. To 9 now within this past year... the cravings lessen.

[Hidden in reply to carolpatriarco01]

Thanks carol. I can relate to the cravings and pleasure. PMR eats your soul. But it's good to hear it gets better.

[HeronNS]

There's another factor. When we crave certain things it's because of our gut microbiome. If your gut bacteria are saying they want more sugar or more bread, or whatever, that's what you will crave. The secret is to resist that urge and give them something really healthy which the microbiome isn't asking for, like a kale salad or whatever similar non-sweet, non-grain food you may find reasonably palatable. It will honestly only take a few days or a week or something like that to begin to alter the balance of gut bacteria. One day you may realize you are craving a kale salad (as I did). So the willpower you need is not so much to fight your craving as it is to resist the demands of the gut microbiome.

[Hidden in reply to HeronNS]

Thanks Heron. I have loads of salad stuff and some kale growing, so I'm going to make sure I have a box of cleaned leaves ready to eat. That's really helpful.

[SnazzyD in reply to HeronNS]

Having watched people have cravings, I’m wondering if eating things that are not good for someone’s body gives them endorphins because the body sees it as a insult. The brain likes the effect of the endorphins so wants more so more of the injurious food is eaten. This is just my theory!

[SuziCutie]

I had the same problem. Eat and eat again. Put on 2 stone. Had to do something so joined slimming world on line. Took few weeks to get to grips with but what a boost when the weight comes off. BUT if I give in and have a biscuit, cake or chocolate then diet is doomed for rest of day.

So true about carbohydrates. Have some and the desire for more is there😥

[ali5son]

Felt the same 2 yrs ago when first diognosed and using pred. I started a diet low carb plan ( not sure if allowed to use name) but meals were shakes, bars.. Lost 6lbs first week and lost 2 stone. Did not think nothing would work for me. Deffo gets easier once you tapper under 10 g of pred