Hi everyone, I am desperate for help managing the uncontrollable appetite I am having as a side effect of high prednisone for a severe case of GCA.
On 40mgs now for another 2 months then hope to taper.
I have always been able to manage my weight well - with a lot of effort : mindful eating, small portions through the day, daily 45 min walks and exercise.
I could have a treat and move on.
Now, if I eat, I literally cannot stop. I have tried all the tips: buckets of steamed veggies on hand, portion every 2 hours. I don't eat salt or sugar and very cleanly since this horrid thing happened, but now carb cravings are beyond my "tools".
Any last ideas I haven't tried?
The face fat, the other prednisone side effects and now runaway weight gain.
I am so depressed as I am just starting this journey. Only 2 months since diagnosis after a very painful one year of going from dr to dr.
Thank you for any help. I am just lying on the kitchen floor in tears. This is really hard.
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kellykel
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Really can't suggest anything more than you have listed. Except possibly cutting carbs altogether? That SHOULD reduce the carb cravings. But it might be worth getting your doctor to have a close look at your blood sugar levels, especially when you have the carb cravings.
Pred causes the liver to release random spikes of glucose - which trigger insulin production which rapidly reduces the blood sugar level. This overshoots, your blood sugar goes too low - and you crave carbs to bring it back up, which raises your blood sugar level, rinse and repeat. For some people cutting other carbs is enough to even it out but not for everybody. It is possible something like metformin might help.
I know the pred side effects can feel awful - but they are nothing compared to the potential ultimate side effect of GCA: loss of your sight. You have to hold on to the positive of what the pred is doing for you.
Thank you for the quick reply. This is so difficult, sometimes I just want go give up. After 365 days of excruciating pain - invasive brain surgery for annuerisms and then neurologist after rheumatologist telling me I have no markers for inflammation-had been on and off prednisone tapers since brain surgery, so they couldn't see it. I would limp to ER and beg for a prednisone taper every few weeks.
Then told I am too young at 53.
Then finally 2 months ago, a leading neurologist saying I am class is GCA and the others really fell down on their job with me.
And now the prednisone and plethora of intense side effects- terrible thrush, agitation, bloating, buzzing in body, anger, tears, severe dry skin, on and on. Can't sleep.
I'm sorry your roller coaster doesn't seem to have a brake.
Did you ever get the sugar levels checked? If your sugars are out of kilter and swinging like PMRpro describes, it'll be amplifying the side effects and causing others like thrush. If you have high insulin resistance your body is starving but it can't get at the sugar that is too high in the blood causing other medical problems and making you feel totally out of control.
After a few weeks of trial and error I have found that no carbs made me feel ill, so I'm low carbs instead of no. I also have more fat in my diet which helps me feel sated for longer. I do get the hunger though and constant denial is wearing, I know. We're all different, but do check that you are not needing extra help to get that blood sugar to the right places.
What rubbish - even the official guidelines admit that 50 is reasonable. Had the patients had more clout it would have been lower.
And I'm still waiting for a doctor to explain to me how you can draw a line at a given age. Especially since one lady was diagnosed with Takayashu's arteritis when in her early 40s. She noticed one day it had been changed to GCA on her notes. She asked why and was told that Takayashu's only happens in young patients, GCA only in over 50s.
But as far as the pathologist is concerned they are identical when you look at slides under the microscope!
Hope it's helped to vent the frustration and upset. I wish the people treating sufferers would read some of the posts here - it would prove how PMR strikes us down physically, mentally and emotionally.
PMRpro is always spot on and I would agree that you should approach your rheumatologist or GP about this firstly and voice your concerns. I know this isn't for everyone, but have you tried meditation? My experience is that if you can find a calming, soothing video on Youtube, it helps you cope a little bit better with this life changing condition. Anything that reduces stress is a good idea. As regards diet, have you researched the GI diet? It isn't just suitable for diabetics but anyone worried about their blood sugar levels influencing their eating habits.
I know that when despair hits it seems like no-one understands how you feel, but everyone here has hit that point when nothing seems worthwhile. I hope you find the answers you need either from this site or the medical profession (or both).
Take care and I think that you are stronger than you know, even if you don't believe it at this moment in time. There were several times when if I'd had the energy I would have screamed myself stupid when I had PMR. Somehow I came through it and I had my last steroid last December. There is hope, honestly.
And yes, I do three full-body meditations a day. I enrolled in a meditation course and have used that. You are right it helps. I haven't been doing much of it the last three weeks.
Hi Kelly, it really is life changing and an awful initial shock. I think I have had fifteen side effects from the pred. When I first started pred I could eat a horse, followed by a five course meal. I try to do other things to take my mind off it. Talking to friends, having my nails done, swimming, browsing through ebay...... I found if I started eating it made it worse. I did drink a lot of water to try and fill myself up, I am not sure it helped that much. It has improved however since I have reduced thank goodness.
It's hard for you to believe now but this side effect passes. It may even have a psychological element, you've not long been diagnosed with a very unpleasant, temporarily life limiting disease. All your tools for controlling the monstrous munchies are the correct ones, but perhaps you just need to grieve a bit for your health and strength.
So pick yourself up off the floor, give yourself a hug and even a piece of chocolate and remember " this too will pass".
And you are right, I have not thought of the deep grief I feel at being so helpless from the invasion of GCA and prednisone on my whole life as I knew it. Thank you for your wise comments and deep empathy.
I do apologize to everyone for venting. I usually try to stay positive
No need to apologise for venting - we have all been there at some point and it DOES help to scream it, it lets off a bit of steam. And believe me - everyone here understands!
PMRpro - you and a couple others like DorsetLady are remarkable resources for so many. Thank you for continuing to always respond with such a wealth of experience and understanding.
I'm in a similar situation. I gained so much weight, feel bloated around my waistline, especially at night and want to eat all the unhealthy stuff I actually never ate before, like chips with lots of salt, want strong coffee with sugar, lots of potatoes, or pasta and so on. And I could eat and never stop. I don't know how to reverse this course right now. I know I feel awful and I'd like to change it. But every day seems to repeat the pattern of the day before.
We could start with a colorie limit per day. Say 1500 kcal. And we could look into anti-inflammatory food recipes, lots of mediteriannian cuisine I guess. And I should eat properly at the table, three meals a day. No snacking, no watching TV and eat. I should move when I feel like checking out the fridge. I should have some delicious tea ready at all times, no honey added. I could just start this for one day and see how it goes.
Do you have a plan to overcome the Prednisone hunger besides getting your bloodsugar level checked? Let me know. Maybe we can inspire each other. I could use some help! Thanks, Monika
Monika, it was terrific to get your note. Thank you. Wow, you couldn't have explained what happened to me better and I love you said you make a commitment to 'not do that again today!' - like I do everyday - and then there I go and do it over and over.
It really has shot my trust in myself in that I will carry through on my goals.
I'd love to partner up with you.
My plan is to clean out kitchen completely of all foods that trigger me. I am going to keep my 'menu' simple. Boiled eggs, green salads, plain Greek yoghurt, raw almonds, lean chicken and spinach. A bit austere, but my mission is to lose 10 lbs.
it's vital I gain traction on this for my comfort level.
Canada just woke up and sun is shining. Not hungry yet, but it'll come. Was up again tonight, but I feel ok.
How are you this morning Kellykel?
For me it's most important that whatever I eat it has to taste good. I tried all kinds of carb cutting recipes and healthy veggie recipes and the taste was just not there. When I ate something I enjoyed I feel more satisfied. If I don't feel satisfied with my meal I think of what I could eat next to keep my tastebud busy. And the cycle starts over again. This would be priority number one for me to have two different meals for breakfast, lunch and dinner I really like and want to eat.
Next thing would be portion size. I overeat, I know that, but can't stop. So, what to do about it? We have to fill our stomach with something, or we have to distract ourselves. It depends on what we like to eat. I would probably prepare a veggie soup and add different spices to it, like curry, basil etc. and have a cup if soup to fill my stomach. There are many websites on the Internet about portion size. If it seems not enough food, we could start with what we would normally eat and take off half of it for one week, and more the next week. Slowly, but succesfully. And we need to look at calories. Fitnesspal is a good helper.
Someone on this forum wrote about fat helping her with food cravings. I wonder if I should start my day with bacon and eggs and count the calories in. If I have Greek yoghurt with berries I'm getting hungry very auickly again and want bread!!!!
Do you think my thoughts are worth anything? Please share what you think, even if we have to open a different thread.
Have you come across the 5:2 diet proposed by Michael Mosely? I found it helped me reassess portion size very well - you are allowed 500 calories a day on 2, non-consecutive, days a week. The rest of the week you eat sensibly and normally. You are only ever dieting for one day at a time. I found after a couple of weeks I simply couldn't finish the plateful in front of me - and believe me, it WASN'T massive!
Other tricks you can play on your mind is filling a much smaller plate - the same amount looks a huge portion on a 9" plate as we used in the 1970s rather than the 12" plate that is common today:
I did read Michael Moseley's website. The concept seems to be managable. I've to see how much, or little 500 kcal are and how my willpower will be there. I did fasting when I was younger, very easy for me not to eat at all instead of a restricted amount of food. Considered my inflammation marker is not going down loosing weight would definitely be a good decision in this tedious fight for less inflammation. I guess, I'm as many here are, sometimes overwhelmed with it all. There're so many different studies, new concepts. How would I know what's right for me. I have to try one thing after another. And then there is my other half who has different needs for his health!
The 500 calories can be a lot of bulk of food if you choose carefully - salad leaves, chicken or fish, low fat recipes. A big bowl of non-thickened veggie soup is a very filling lunch.
Taking sugar out may also help the inflammation - sugar and simple carbs are very pro-inflammatory.
Kellykel, same sort of problems. 106kg to 126.9 since end oct/Nov. I felt like an animal. I just shovelled food in as fast as I could. Big carb and sugar cravings. I don't look or feel like "me". I agree with the other replies re the carbs/sugar. Cut down as much as you can when you can. Don't stress too much if you have a difficult day. The stress just makes everything worse.
Re exercise I am unable to do much, as well as TA/GCA I have CFS/fibre which limits me. Because of the side effects if the preds I really struggle but I keep on trying. I get my rollator out and try to walk around the block or drive to the park and walk around. I bought a secondhand exercise bike and go on during the adverts if I watch any tv.
Today is a day when my face isn't fat and I feel a bit more human. I don't want to make my reply to you "all about me" I just want to share what may also help you. At some point you will find things that work for you. It seems to me this journey is very up and down depending where you are on the preds/meds. Good luck
No way you can say how long - how long is a piece of string? We are all different. I gained a load of weight, first through being inactive with unmanaged PMR and later when put on Medrol, I hadn't gained more when on prednisolone. I was put on to a form of prednisone and started low carb - and lost 36 lbs over the following 18 months. The fat around my middle was the first to go and eventually I got my face back from behind the moderate-sized moon - it was all fat, not just the ring bit. But go it did. I'm still overweight but not a lot - another 10lbs would have me at ideal weight for my age. But it is VERY resistent!
Bless you, I feel for you I really do, I could have written this myself, I've yet to get a grip on my appetite and am getting bigger by the day, currently on 60mg Pred...feeling exactly the same - and despondent that there feels like no end in sight and that I'm not the person I was even a few months ago. The worst feeling is the shame...I am ashamed of how I look and embarrassed when I see people I know even though I'm told it's not my fault. I think as others have said because it's not a well known condition and not very well understood by the general medical profession, we often are fobbed off with 'there's nothing wrong, it's your age, it's all in your head' and that I have found, takes a long time to shake off. The depression is taking a big toll on the willpower and I know it's a catch 22, I will feel better if I eat better..
Happy to be a diet buddy...I'm on my fitness pal, chin up Hun this will pass x x x
What a kind and helpful response to get. Thank you. Sometimes I feel so alone. Clearly I am not and you are on of the wonderful, caring people on this site that helps.
I really appreciate your taking the time to respond. Feeling a bit less despondent.
Hi Kellykel, I have been on pred now for over 3 years and I can totally empathise with your cravings. I gained quite a bit of weight and found exercise akin to pushing hot needles in my eyes. Four months ago I decided I really had to try something different as all the drugs I've tried haven't really helped. I read so much about low carb diets helping I thought I would give it a go. Now I dislike the word diet so instead say I've changed my eating regime. Well for me the results were quite quick, firstly I felt better within a week and started to lose weight! I've definitely lost that foggy head feeling and have started to walk a lot more, helps the weight loss as well. I haven't really felt hungry since changing to a low carb eating regime but it's not always easy to find something to eat especially when out but it can be done if you put a bit of forethought and effort in. Google low carb recipes, there are lots of great ones and my staple is sausage & egg breakfast muffins. A square of 70+% dark chocolate takes care of those sweet cravings and a handful of nuts with a cuppa takes the edge off. I hope you find something that works for you and start to feel "normal" again soon. Oh and I'm still on 11mg of pred a day along with 400mg of hydroxychloroquine.
Hi, I've recently joined this forum and have had some good sound advice from some very kind people, which was appreciated. On reading the following blogs I didn't realise that pred had the side effect of putting on weight. Over the last weeks I haven't stopped eating and feeling hungry all the time. I'm the heaviest I've ever been and now I know the reason why. I thought i was going round the bend with all the weight that was pilling on. I exercise at least 2 times a week and also swim twice a week. I have had weight problems in the past when I was healthy but I managed to get the weight down by using slimming world recipes. So that's what I'm going to try and see what happens. Thanks everyone
Wait it out. Try to walk daily. Try to not eat as many carbs as your body is demanding. I'm still holding on to 25 lbs from this. Just at 13 mg I'm beginning to feel a bit of control over this sad situation. Patience and view it as temporary . It will pass. Get condition under control first
Hi yes I think most of us are fighting the eating and weight problems. I 've found that there are so many things to consider that I don't have any control over that I felt that my way of eating was something that I could try to be in control of and that definitely helped me to feel that I could be in control of something! I switched to a nearly non carb way of eating ( which fortunately I like anyway. I do have plain yoghurt with some red fruit and honey and toasted almonds for breakfast. I often have tinned sardines or eggs and small salad for lunch and then a choice of any sort of fish or chicken with plenty of vegetables for the evening meal. I do try to cook the chicken or fish with turmeric and smoked paprika ( I love smoked paprika but don't like the taste of turmeric!) and cook these in foil parcels with either butter or olive oil. I don't cut back so much on fat but carbs. I also find that once I have the taste for buttered toast, roast potato,biscuits or cake it is quite hard to get back on track again so I try to avoid anything like that by either not cooking them or having them in the house.
I have a milky coffee late morning which fills me up and is my treat! ( I think you need to incorporate a treat into the new way of eating. I sometimes grate Parmesan cheese over my vegetables to make them more interesting and also means I don't need to use a lot of cheese to get the taste. I would say that during my 2 and half year journey on Pred ( one year being at about 20mg ) I haven't lost any weight ( except at the beginning ) but I have remained mostly at the same weight without any significant gain. In fact folk continually tell me how well I look ( which sometimes can be so annoying) but then I'd rather look well than ill !!
I would imagine it is much more difficult on a higher dose of Pred to put all of this into practice but maybe a good idea might be to start incorporating some ideas and building on these so that weight just doesn't keep piling on and you feel you're going round in circles.
Best wishes on your journey. Let us know how you get on.
Just as an aside too would say I personally haven't found it too hard to stick to this when I go out ( which I must admit is not too often these days!) but I often have steak( as I don't eat a lot of red meat normally) or fish with a salad and a nice coffee( instead of sweet)
It seems like the only thing in this that we can control, and it became my mission!
Adopting close to Zero carbs, no sugar ( though do have that chocolate square, and sometimes put Cacao powder in my morning coffee with, half and half, for a treat, and no added salt, and few fruits, I have lost , or maintained, and have had zero cravings.And so far no face changes, And I am just now after 7 weeks in , down to 22.5 from higher doses, and that still may come . Also drinking lots of lemon water, actually turns out too much, so watching that.
It really works, esp adding a little fat, helps curb the appetite.
Its not easy at first but it did get easier for me after first week .. I would talk to myself when walking thru the store, past the goodies, telling myself head to the vegetables,
giving myself pep talks.. now I am not even tempted.
I have decided for Mothers day, to have my favorite pizza, and then right back in the saddle on Monday...so there can be treats, once you have established this way of eating, but I need to be careful to be in control,as its a slippery slope with cravings
I was in the midst of dieting before this happened with a popular meeting plan, following to the letter in piints, but eating carbs and was not losing much of anything.
I am down quite a bit now... Give it a go, you can do it!!! Rooting for you....
So, I made scrambled eggs for breakfast this morning to see how fast I'll get hungry again. I had two eggs, quarter teaspoon tumeric, no extra salt, a bit of diced red onion, a bit of diced fennel and added one slice Havarti cheese. It tasted good and my next meal was at 12.30 pm. Not hungry at all.
Galp, I think full fat yoghurt is a great idea. I'm going to try it. Thank you for you breakfast list. But I have to say breakfast is easy, dinner time is my downfall!
Yup, me too. All is manageable until dinner- no matter what or how much I eat.
My new plan is to just dish out a cup of veggies and protein with some fat and then just keep telling myself "you had enough food to feel full so move on!"
Funny, I do get full, but I am still ravenous. If I keep eating I feel like I'll explode. Didn't stop me though before.
This is exactly the same with me. I think I have to remove myself from the situation at dinner time. Too much time to think about what I could eat next. Have to figure out what to do! Any ideas?
Sorry for late reply..having some other side effects complications, with my potassium levels but working thru it.
I eat very light at dinner, usually a seasoned chicken breast , vegetable or fish.
Also i do eat red meat so will have a cheeseburger without bun, sometime between to potabello mushrooms , grilled onions..
Eating like this I realky dont worry about how much...
Depends which of theses i have for lunch.
Then i will have a chocolate square, 70% and some walnuts, or a cup of decaf with real cream later in evening, if still awake..
For me ,by being strict the first week or two, my cravings were gone,and I have to many times make myself eat. I notice if i dont eat my weight loss stalls.. Fine line . Also drinking lots water . ( though a bit less now with potassium imbalance)
After a particulary stressful day last week, I decided to have pizza with my family, quite frankly after first piece i wasnt interested, had salad and was done. Even just that salty food caused water retention under my eyes the next day.. Just not,worth it to me
My daughter is getting married in Oct, so i have a great motivation to avoid extra lbs!!😉But mostly it takes my focus away from the parts of this journey I cant control
ended up in er. severe muscle fatique, unlike anything on pred or pmr, high bp and heart rate, difficukty swallowing numbness tingling, thought was stroke.
I am on a diuretic, as well as was drinking huge amts water.
Its what i have been on for blood pressure for years..
Was off for few days, due to potassium, got edema in feet and under eyes..
Tues k was 3.6 that was after being on K supplements and off HCTZ
So now back on at half dose hctz and off k supplements? ( dont get that ) Edema gone. Keeping up with low salt v8 juice as has most potassium in it then most foods.Will retest On Monday
i too questioned this , but thats my internist plan..See rheumi tomorrow but feel she is happy to let gp handle the potassium. Which does make sense.. Will see what minday level is, but believe me you know when you are low, and I will be popping the supplements if feel that way again
It is worth investigating what other cultures eat for breakfast. I think it is a very Anglo-Saxon thing to think of specific foods as being "breakfast foods". I don't eat breakfast at all unless at a hotel where it was already paid for - but when I do it is bacon, eggs, cheese and plain yoghurt. But I could eat those every day anyway...
And my all-time favourite breakfast is Scottish smokies (smoked haddock) with poached eggs
I am reading a book at the moment about vegetables and that until recently they were really not eaten. Protein seemed to be the main order of the day or gruel. Swans, venison, rabbits etc!! I never thought about the history of food before, but it is quite an interesting thought.
Breakfast for the upper classes was more like brunch/early lunch I thought - didn't eat until half way through the morning and dinner was late afternoon. If you were poor - you were lucky of you got anything...
That is interesting. I know the Victorians ate an enormous amount, mainly protein, well the rich ones anyway. This book goes back to the Greeks, I have only just started it but it is fascinating.
Lots of good suggestions here. But here's a thought. I recently read a book (The Human Superorganism by Rodney Dietert) which described the importance of our microbiome. And one of the things I learned was that we are not just feeding our human cells, but also the microbiome which in fact makes up the majority of the cells which we perceive as "us"! If things go out of balance we can develop cravings because an overpopulation of one microbe over another can be causing us to crave the food IT wants - not what we actually need! I know this sounds bizarre, but I think the theory has merit.
We are often advised to eat yoghurt after a course of antibiotics. In fact I think we can improve the health of our necessary little companions by broadening the scope of our microbe bearing foods to other things. If you aren't used to eating fermented foods they do need to be introduced slowly in small amounts - a tablespoon of sauerkraut or similar fermented vegetable, four ounces of kefir or kombucha. But it may be that by rebalancing the microbiome some of the carb craving could be reduced. I find I don't crave carbs at all anymore. A few weeks ago I started to crave leafy green vegetables! 🥗
I used to eat proportionately quite a lot of carbs although I'm a fairly abstemious person when it comes to food. When I started pred and my blood sugar got too high I was very disciplined and basically stopped eating any wheat, except the occasional treat, and substituted protein - like eggs and pumpkin seeds at breakfast instead of a big bowl of cereal, no more sandwiches at lunch, that kind of thing. Later I discovered fermented veg, and as a great variety is available at our local farmers' market it's been a real adventure to explore different foods. This availability, I must add, is very recent, probably only about a year. Recently we started being able to get different flavours of kombucha, plus I can buy kefir at the supermarket. We now always have a variety of these foods in the house and consume some of them daily. You do have to be careful of the sweetened things. At first we drank sweetened kefir, then began to mix with the plain, and now we prefer the plain and I never buy sweetened any more. (Same with yoghurt, but I hadn't bought flavoured yoghurt for years.) Everyone knows about sauerkraut but over the past few months I've learned there's a world of possibilities out there. This evening we had a beet mix, just a little dollop with a mixed salad, and a glass of cherry and beet kombucha!
In terms of how long, hard to say. I guess this craving for leafy greens means something has changed, and that certainly took several months, but I haven't had a craving for carbs. I think the high protein foods I ate instead satisfied my hunger enough. And we don't normally keep much in the house. Just bread for hubby's lunches, really, so if I'm "hungry" it's got to be some nuts or a banana, not a sandwich or a pile of cookies! Mind you, I am really thin, have been since before I started pred, and that comes with its own worries as I've no reserves if I get sick, so I'm trying to eat more, and I do things like pour more olive oil on the salads, etc.
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