Please can anyone tell me. I have just read on internet that you only start to put on weight with prednisolone. After 6 months. Is that correct. I thought I was doing well after being on it 4 months. My body is un recognisable as got re distribution of fat. Belly bum back etc. But not put any weight on. On the scales. I have been eating the correct diet. Mostly. Have I got this to look forward to. Thanks
Weight gain : Please can anyone tell me. I have... - PMRGCAuk
Weight gain
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zoey12
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I’d love to know the source of that particular fallacy! So, yes you do get that redistribution of what fat you have to every visible place possible as you have found. For most that can’t be helped. However, what do you mean by “correct diet”? Also, when you say “mostly”, what do you mean? Pred is very unforgiving of carbohydrate and it doesn’t take much to put on weight.
Another cause of weight gain is fluid retention due to Pred making you retain sodium. I had to practically cut out any salt otherwise my face was even puffier, especially round my eyes. Just one meal with gravy would be enough for a fright in the mirror the next day.
Thanks for reply. Diet. Chicken and salad or chicken breast and veg no potatoes or bread. Cereal for breakfast. One banana a day grapefruit. Like Greek natural yogurt from Aldi. Smoked Salamon. With salad. Maybe a piece of steak with veg one day a week. But I do go off a bit. Bit of dark chocolate over 70 percent. Coco. But if milk And bit of Alpro milk Tesco no sugar. Mostly I do this but fail a little bit What do you think
Sounds pretty good! Generally fats are ok and you need them to help absorb fat soluble vitamins. Do you eat pasta and rice? Some of us get away with very few mishaps. If you were to look at a typical week, what sort of extras creep in and how often?
Yes I have stopped eating rice and pasta in last few weeks. But probably have some maybe once every 2 weeks. It’s the dark chocolate and maybe a couple of biscuits in a day that’s hard for me. I don’t do sweets. Or crisp s. Maybe the odd ice cream cornet. Once every 2 weeks about.
So I had two squares of 85% dark choc a day with berries and unsweetened non dairy (I can’t tolerate much dairy at all) yoghurt. I had two small glasses of white wine a week as my treat. Two biscuits a day would have not been good for my stats! If you have given up pasta and rice in the last two weeks that’s good but you won’t be seeing instant results. I’d be really strict for a month, see what happens, keep the rice and pasta off and then see if you can get away with the odd thing if you’re desperate but be ready to stop that if it turns out to be still too much. Also, be very honest with yourself about the sneaky bits. We keep going on about weight as if it’s purely appearance we worry about. Really, the main goal is not allowing one’s blood sugar to keep going up which is not good and can lead to diabetes or a state similar. This is because Pred forces your liver to have bursts of converting its glucagon stores into glucose, which happens before you eat anything. Add in some carbs and you spike higher which causes a rush of insulin because high blood sugar is bad for the body. The act of insulin is to make that glucose into fat. It’s worth asking the GP to do an HbA1c blood glucose test to see what your average glucose level over 12 weeks is.
Be careful eating grapefruit . My step daughter works in Boots pharmacy & says that grapefruit can seriously affect drug absorption
I take Amlodipine for blood pressure control. Grapefruit , both juice and fruit, is banned. The pharmacy puts that advice on the box, just in case you don’t read the leaflet inside. I don’t know if it is contraindicated with other drugs.
Not okay with statin drugs.
There are other drugs where it is contraindicated but it should always be warned against at the pharmacy - one of the really important reasons for sticking to the same pharmacy so they know your prescription history.
PMRproAmbassador
B*££*^"s!!!! Lord knows where they get these ideas! Weight gain can start within a very short time - partly probably fluid retention but nevertheless weight gain. The fat deposition will start as soon too - especially if you are eating too many carbs,
Snazzy and I need to be at VERY low carbs to lose weight, I find maintenance is less tricky. But your banana alone would take me to the limit to lose weight (generally well over 20g because they are so big these days). Then half a grapefruit, 13g, cereal - obviously depends on what and how big your portion is but easily over 30g at an ideal portion size and no-one puts that little in their dish unless they are weighing it. And unfortunately, every bit of carb counts, When you weigh everything and check the carb content and add it all up - it can be quite scary.
So I might be on 30 carbs. Too much. Mmmmmm. I will look at this see what I can manage to cut down on thanks
The banana and grapefruit I eat to help with water retention. Or is it bloating. Not sure. Is there something better I could eat for that thanks
The banana and grapefruit alone could be the best part of 40 - bananas are often 24g carbs, Plus 30 for the cereal, 70, couple of small biscuits, another 14+. What's in your salads? Only salad leaves and cucumber are near enough zero carbs, a tomato is 3g, There are small amounts of carbs in most veggies -
Carbs also encourage water retention.
Have a look at this to see where you might be picking up carbs:
Have a look at what you eat that contains salt. I had to give up all sauces, gravy, any processed foods like tinned food. Until I got to well below 10mg life in food was pretty dull but it was a means to an end.
Yes I have been trying to not edt salt but it’s in nearly everything. But managed to stay off tin food accept tuna. It’s really hard
You do get quite a lot of stuff canned in water rather than brine. All about reading labels ...
Yes, if you are very affected by salt one’s diet can be fresh food only and very restricted for a time.
You helped me last month when I was beginning low carb without weight loss. Thank you for alerting me to checking carbs in everything… this morning the scale showed a total of 16 pound weight loss since my start on may 3 rd. Given no loss for first two weeks I am thankful for the rapid response since your advice. It is very easy to assume that foods are carb free, many are not….. thank you so much..
That is brilliant - well done!
I have been a scientist since I was 11, leaving primary school. What food group is in what foods is imprinted on my brain - providing it is unprocessed! Even I get caught out with processed foods sometimes - and most people don't have that background. Manufacturers label food as "healthy" - when it isn't the most important factor. Fruit is healthy - but it has a lot of sugar. Mostly it doesn't matter too much until someone is trying to keep a lid on their carbs.
Would you consider writing a post about your experience? How you thought you were doing it right but not losing weight and what you discovered when you looked more closely? I think it would be really helpful to others.
Since being on Pred & Actemra I have gained back all the weight I lost when I was really ill and undiagnosed with Pneumonia and GCA. But the clothes I kept don't fit because I am a totally different shape. I used to have a waist but big hips, now I have fat on my back/waist, tummy and hips. Tops are ok but they are strained around the stomach area. I had hoped I would lose some when I tapered but it hasn't proved any easier I'm afraid 😒. Not helped by my inactivity and love of sweet stuff and I'm shorter due to spinal collapse!
I know what you mean I had a decent figure for a old one 66 yrs in January this year and never suffered from putting on weight all my life. Till taking prednisolone. I used to have a waist too I look pregnant. Fat down my back all round bum. And guess what lost a lot of my bust too. All in 4 months. I m devastated. I think it’s time that the professional s. Managed to fine a better more precise treatment for pmr. So I will try to adjust my diet. And keep going. Take care. Hope you get better soon
They probably have - but it is unaffordable and has adverse effects too. Including weight gain I have read!
Not very good then. How about herbal ideas. But I suppose they will not be strong enough.
No-one has found a herbal approach that works. But deadly nightshade is herbal ...
Oh CRUEL Pro....!!!
It is my standard answer to anyone who feels herbal is safer than strictly regulated and monitored use of pharmaceuticals. 
If you haven't put on any weight, it seems to me that you don't have to worry too much - unless of course some weight gain has been hidden by loss of muscle mass. But if the scales do start to creep up, you can always adjust your diet further.
I agree with Sharitone. Your fat has just redistributed itself but you haven't GAINED any weight! Well done!! I have gained over 15 kilos and I HATE it......I think from the start (over 5 years ago) of taking pred, I had the attitude "Oh well, I'm going to gain weight anyway - may as well go for it" (ice cream is my undoing).
You, on the other hand are eating so well and obviously have good discipine.
I have the Five Two Diet for Beginners on my coffee table but it seems just reading it doesn't quite cut the mustard?
Hello, have you heard of time restricted eating? Its where you dont eat breakfast (i take my pred with a glass of kefir), and have my first meal at lunchtime. I lost quite a bit of weight doing this, and I also upped my exercise significantly. Good news is that the horrible fat on my back and face DID disappear as I reduced the pred - im currently on 2.5mg. This regime meant I could still eat small amounts of things I like - for me, portion size is better than abstinence, especially as I like a glass of red wine too! Good luck x
Oh dear! I feel guilty reading all of the above! Have to admit that since developing PMR four years ago, I haven't altered my diet one bit. It didn't even occur to me to do so until a few months ago! My partner is Italian so I eat quite a lot of pasta, rice and carbs in general really. I am 5ft 5ins and weigh exactly 10 stone. Size 12 for some things and 14 for others. My only frustration really is that my waist measurement is only four inches less than my bust and hips which are the same as each other. My shape has def changed but it probably would have done anyway! Am on 3.5 mgs of Pred presently, slowly reducing to 3mgs. Doubt I will change anything now - am too old!
I know gp’s don’t have lots of time to allocate per patient but if at the beginning of my treatment they had just said to watch carb intake I would have known. I have had to find too much info online and without a starting point, knowing carb intake was important would have made such a difference and maybe I wouldn’t have gained 2 st on top of a weight I was already struggling with.
Yes quite right. I too was told nothing which I am quite mad about. And I mean nothing. . I have had to read google. Not knowing what’s right or wrong on there. G p s need to know more and pass it on to patients. But this group is very good. People have so much experience on here. You are all helping me a lot. Thanks
I've never even seen anyone, just a phone consultation. I do have a good source of information as my sister was diagnosed 6yrs a go and lead me to this site, she had successfully finished Pred and apart from a bit of fat distribution on her face she remained stable so a good example of "how to do it". I've mostly been overweight in my adult life and have only put a bit of weight on but I hate my appearance now, puffy face especially. Thank goodness for her guidance.
They aren't aware of it - even Prof Mackie who is a specialist and researches PMR hadn't considered the role of diet
Thank goodness for this group!
I thought I had done well not putting on weight even though it moved!! Until I reduced my dosage.. then it piled on horrendously.
Morning all and please don't shout at me as I'm just asking a question. I know that us guys are in the minority on the site but does the weight gain and fat distribution tend, for what I guess would be biological reasons, to be something that affects females more than males. It has never been a problem for me and I wonder if I'm just incredibly lucky or if other guys suffer from the same problem?
Good question - is it the same for men? I'd be interested to know the answer. The areas we women put on weight due to Pred tend to be very specific: the Buddha belly, back of neck hump, face. I'd also be interested to know if men get the same blood sugar spikes from Pred as the weight gain might well be at least partly connected due to the effect on insulin leading to insulin resistance. I have no idea, only thinking this as read so many books on the effects of different foods on blood sugar levels and diabetes. I have noticed men tend to get 'beer bellies' due to carbs but are lucky they can also lose it much quicker than us when they diet - the men in slimming groups always pick up the prizes and get fast results
Not ever been in a sliiming group so can't help with that one. I monitor my BS levels weekly and they tend to range from 4.7 - 5.4. My HbA1c levels were at 41 when first diagnosed with PMR and are now currently at 37, so would guess the spike is not as pronounced for us, or at least for me, without relevant data I can't assume the same for others.
They are pretty good levels, within the normal range, under 42. What dose of Pred are you on out of interest?
On 5mg at the moment and two years in at end of this month. On 6534.5grm total. Its really interesting to see how it affects people so differently.
As far as I know - yes they do tend to. It's a cortisol problem but there are differences in the effects between men and women. But there are also differences in the effect from woman to woman and man to man so it is difficult to say.
mayoclinic.org/diseases-con...
niddk.nih.gov/health-inform...
Have you cut your carbs? I'm sure my Hba1c used to be higher than it is now (37 when last measured)
OMG just clicked on the first link and that is a picture of me! I've been eating low-carb for years, with some success I think, but still look like that. Last BS test was high and in the diabetic range but am trying to establish if it is a result of the Pred spikes and if so what to do about it. I doubt what medication is prescribed for T2D is the solution, as according to Michael Mosley it isn't even the best solution for T2D, low carb diet is. I'm going to ask for 4x daily pin-prick tests or similar to find out what exactly is going on when I have my appointment with the diabetes nurse. For all we know it could be one high reading per day but that brings up the HbA1c average
An Endocrinologist once told me that what we have is 'Cushingoid appearence' rather than Cushings Syndrome but these articles say it is Cushings caused by steroids, so who is right?
I make the differentiation as Cushing's syndrome - appearance due to excess corticosteroid and Cushing's disease. It is the difference between endogenous and exogenous steroid.
We know where our excess steroid comes from: it is exogenous, the pred pills we take every day. Cushings disease is a medical condition, also caused by too much corticosteroid, but it is endogenous, being produced in the body by a physiological process that has become deranged for some reason. There is no single reason that applies to everyone: if may be an adrenal tumour producing too much cortisol, or it may be a pituitary tumour producing too much of its hormone which stimulates a normal adrenal gland to produce too much cortisol - or any other part of the entire HPA axis that has gone wrong (hypothalamus, pituitary or adrenal glands).
It is very complicated! But it is caused by too much steroid from SOMEWHERE. Just like the garden can get wet as a result of a rainstorm or because you got the hosepipe out - you have some control over the hosepipe, you have none over the weather!
Brilliant explanation PMRPro - thank you! The article uses Cushing Syndrome for both exogenous and endogenous causes hence my confusion. The diagram in the Mayo link is spot on unfortunately. And the list of signs and symptoms of Cushings syndrome also overlaps with signs and symptoms of PMR and of steroid side effects to give us a complicated triple whammy:
Other possible signs and symptoms of Cushing syndrome
Severe fatigue
Muscle weakness
Depression, anxiety and irritability
Loss of emotional control
Cognitive difficulties
New or worsened high blood pressure
Headache
Infections
Skin darkening
Bone loss, leading to fractures over time
Also, men tend to have PMR/GCA and be on Pred for much shorter times than women. I think? I know the median time to have PMR is just under 6 years but don't know if there is a difference in the sexes
I think some of the differences may relate to muscle bulk and fat around organs.
I did look like that image when I was on Medrol - but I definitely have a waist and no stick thin limbs!
I have a waist too, but also the pendulous and overhanging abdomen which i think is also known as an apron. And thin arms and legs - from the back I imagine I look normal. It's so depressing .... high time we had a better treatment than steroids
I've had a small apron for many years - pre pred too and pred didn't make it much worse
I did lose 2 stone around 2017 and have kept it off, so mine might be connected with that, but interesting that it is clearly shown in the diagram in the link as 'pendulous abdomen' which sounds like a Latin motto or one of Rees-Moggs childrens' names
Mine appeared post c-section and however much weight I lost it persisted a bit. Bigger now than it was, but not entirely pred-related.
Very interesting reading those, thank you. I have cut down carbs to a certain extent after reading the posts here, but I've not made major changes to diet. Apart from the last blip, which seems to have sorted itself, I've also been lucky to be able to stay active, generally walking five plus mile walks with the beasties every morning before breakfast, and then a gentle meander with them in the afternoon.
Unless all food and drinks are weighed and nutritional content noted in strictly lab conditions we have a tendency to underestimate what we eat.we also justify eating decisions, i.e. oh one more little potato won,t hurt ,I,ll just have a couple of these juicy grapes,I,ve done a lot of running around today so earned some extra chocolate etc etc.I have found it easier to photograph everything before I eat or drink it..Not everyday otherwise my mind sneaks cheats round this.Not only can I actually see exactly what I,ve consumed the act of picking up my iPhone/ipad creates a pause before I eat the food,a small mental gap to ask myself "am I really hungary';if so I eat with pleasure!
There are so many ways to spin this subject and it is quite frequently visited here on this site. I look at weight gain/loss in very simple way. If the caloric intake is more then we use/spent then there will be weight gain. One can point to PMR or pred or carbos or whatever, but the fact is that this illness causes life style change ( we are basically less active) and if we don't change diet to match new lifestyle, then weight gain is result.
I personally have not gain or loss any because I went back to same activity ( 4-5Hr of endurance training, gradually) as soon as my dose was down to 10mg ( 6-8 weeks from start of the treatment). As far as diet, I have no restrictions... I just burn it :).
So maybe it is different for men
I'll start off with SORRY to all that are having weight problems. I became another one of us PMR lot, 4 years ago this month, then GCA joined in, a month later. Started on 15mg Pred, then up to 40mg. I started on the low carb diet a few months later. I lost 2 stones quite quickly, the weight loss was quicker on the higher dose of Pred, and for the last 2 years, (here comes the "sorry" bit) I have to eat extra to maintain my weight. Don't want to disappear. I could do with some "hips" to keep my trousers up. Trevor, another male.
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