Hi,
For GCA I was on 60mg prednisone for a month then 40mg for 2 months (should have reduced after 2 weeks but blood CRP & ESR were raised ) reduced to 35mg this week. My question, I have got moon face which seems to be getting worse, at what dose can I expect moon face to start going?
Hampster chops!!
The disappointing answer to this is it isn't likely to happen until under 20mg, maybe later - and if you have GCA you need to be above 20mg for a good 6 months I'm afraid. But it will go eventually. In the meantime avoiding processed carbs as much as humanly possible (sugar, flour products, especially bought cakes and stuff) and keeping your salt intake down will help some with both weight gain and fluid retention.
Always hold onto the fact that your hamster cheeks are balanced by not having gone blind - that is why the high doses are needed. It's horrid - I've been there and so has my 14 year old granddaughter. She put on about 20kg when on high dose pred for severe asthma. It is going now but it was the pay-off for the 5 months we have now had with only 1 overnight stay in hospital. Beats 2 visits a month to the resus room in A&E!
Thanks Eileen and yes, you are so right, this is nothing in comparrison with losing eyesight!
I'm a bit of a wholefood junkie and more so since Pred, I only have wholemeal carbs, haven't touched a potato, white flour, cakes, pastries etc. I have sweet potato from time to time, wholewheat noodles or wholegrain ricee rarely eat bread bit when I do it's wholemeal. I don't add salt to anything. So, I'm thinking I'm doing all I can but open to suggestions if you have any. I'm going to look like salad, it's going to be harder in the winter months, I do like my food but have not noticed additional cravings since pred and am trying to stick to my usual eating routine.
The plan with the preds was, 60mg for a month, 40 mg for 2 weeks then reduce 5mg every two weeks until on 10mg then stay on 10 for 6 months.but I had to stay on 40mg for a month, now on 35mg, at that rate it will likely only be 4 months on 20mgor higher. I'm getting my blood checked monthly at the moment because the CRP was raised again, now the CRP is 1 but now the ESR has crept up to 30 , one up one down!
Even wholemeal is carb and carb turns into glucose when digested - just slower! The biggest culprit in it all is fructose - fruit obviously for you since you're not eating much in the way of sucrose which is the other source.
I know the feeling about looking like salad - I eat no breakfast, just 3 mugs of tea with milk before I get out of bed! Lunch is a big bowl of mixed salad leaves and tomatoes with olive oil, herbs and vinegar. Dinner is either a repeat or a pile of veg plus 100g fish or meat. Though I don't refuse the chance to eat out ;-) or an icecream every couple of weeks - only the high quality handmade variety so I have to make the effort to get it. It sounds very boring - the variety is in the fish or meat! Mind you - salad here is much better than the UK, a choice of at least 8different whole lettuces of different colours (with dirt on) and a choice of loads of salad veg. And far cheaper - a big lettuce costs about 50p. I eat salad all year round and lots of grilled or roasted veg - it concentrates the flavour and I don't get tired of it.
The most recent research showed that there are still cells implicated in GCA present after 6 months at above 20mg despite both CRP and ESR being normal and there being no symptoms. If ESR is up that is less concerning than CRP - ESR will go up with just a cold or urinary tract infection so isn't too reliable.AS your dose reduces so should the steps you reduce by - never more than 10% of the current dose is the recommended rule of thumb.
I recently read a book called Why we Get Fat and What We can Do About it. Fascinating reading, a bit hard going to start with but full of convincing info about how we have been misled with regard to calories in and calories out, that fat is the ogre when in fact carbs and sugar are! Whilst on holiday I avoided carbs and fruit, I was on a cruise and normally gain ½stone a week, I didn't gain a pound! I got home and started on the whole carbs again thinking I need them for energy (I have MS). Having read your post I'm going to try stopping carbs again, not sure how I will fill myself up though, veggies I guess.
With regard to reducing Pred, the consultant said to reduce 5mg every two weeks which is over 10% but what can I do, that's what the consultant and GP are now prescribing. My consultant is said to be one of the top Rheumatologists around so I'm a bit surprised she's got it wrong. She also was certain it would not come back, hope she's right!!
Ah yes - there's rheumatology. And then there's PMR! I think we are the poor relation somehow. There's nothing to see on x-rays, no twisted joints, no real tests - so it can't be real can it? I have friends with RA who tell their doctors they are having a flare but because they can't SEE the pain they think they are exaggerating, PMR is the same - it is SO rude I think, labelling us as liars.
The whole "you have to have carbs for energy, for your brain" is a bit twisted. Very VERY simplistically: Take overnight, when you "fast" for probably 12 hours, things still happen. If you run out of glycogen stores you do feel a bit woozy sometimes but after a few days of there not being an awful lot of instant blood glucose the body starts to use fat stores - and the brain is actually happier. And more to the point - you are using those fat stores. If you cut the number of calories on a diet the body realises that you are starving it on a permanent basis and starts to adopt "starvation mode" - like your computer on battery mode rather than mains. It uses fewer and fewer calories - and even though you are permanently hungry you aren't losing weight either. So you get totally fed up and give up. Then you put on more weight than you've already lost...
When you cut carbs you also find your appetite is damped down - you don't get hungry in the same way. The fat you are now allowed in reasonable quantities keeps you fuller longer and you stop needing to snack. If you get a chance read the 5:2 diet - not suggestingyou try it necessarily but Michael Moseley talks about feeling hungry, how he expected it to be awful, but he found that when you are strong minded and have a drink of water and find something to do you forget you are hungry and then when you do come to eat you are much more satisfied and notice when you have had enough. You must be a similar age to me - we had 3 meals a day when we were children didn't we, and not massive portions either. I remember feeling hungry - but we weren't allowed to snack "You'll spoil your tea" was the cry. Now there is constantly food available - AND they told us it was good to have 5 small meals. Yes, maybe - if the total calorie count is the same it might be. But it never is.
Who were "THEY"? People with shares in food manufacturing methinks.
Sue, listen to your body! The Dr. must make recommendations but they are just general and do not fit everyone. I will NEVER again drop five or ten milligrams in one step because I find that even 10% steps leave me with side effects. My Dr. just recommended that I drop from 25mg to 15mg over 6 weeks. I will but it will be in 2.5 mg steps 7 days at a time. He explained that it takes 5 days for the body to get acclimatized to the new pred level when one tapers. I relapsed in May because I did not listen to my body.
I learned to taper slowly and since I have six weeks for this next drop, if side effects start getting really rough I have two weeks to pause in the six week period.
My recommendation is if you start feeling serious side effects after a taper, go back one step and call your Dr. Tapering pred must be what drug addicts feel like only we go cold turkey multiple times. 15mg is where I started loosing my cheeks the first time and since I cut out carbs I did not put them back on after I relapsed.
All very true, and I too wonder who 'they' are, they seem to know such a lot!!
GCA is my third auto immune disease, I have MS & Alopecia, MS is another not seen disease for which I get no acknowledgment that I may need help!!! But the good news is that the steroids have started my hair growing again,well they've stopped my body attacking my hair at any rate, not sure if it will last! Just had Chilli with a plate full of veggies, aubergine, courgette & sweet potato. If you have any veggie ideas I'm all ears, running out of ideas! I was 60 in June, a memorable year for all the wrong reasons!!
Can you suggest any breakfast options? I always have porridge but I guess that's off the list now? I can't eat eggs I double over in pain if I touch egg white for some reason, I did hear people with MS can have problems with egg white, mayonnaise is fine so it must be the whites.
Thanks. When I reduced from 4o to 35 I noticed I got a slight temperature again so GP suggested staying on 40mg while I was on holiday. Bloods history CRP was 3 on 23 June, 12 on 7 July, 25 on 22 July, 13 on 1 Aug and 1 on 11 Aug. Looking back, I reduced from 60mg to 40mg on 1 July so perhaps that's why the CRP went up and I felt rubbish. It will be interesting to see what my CRP does in a months time after two 5mg reductions. If that causes me to feel poorly and the CRP to support that, then I may suggest a slower reduction, although my tabs are 5mg so smaller denomination will be needed.
I'm not saying that you have to cut ALL carbs by any means - I don't see why you can't carry on eating porridge as long as you aren't pouring sugar on top of it! I love porridge too but I wouldn't eat any other breakfast either anyway now, that's just me not needing food in the morning. I never did eat breakfast and really only introduced it because of the hype about breakfast being important - for me it just added that number of calories in fact, I didn't eat less at lunchtime and I don't snack either. When I eat porridge I make it with water, use salt and eat it with cold milk. True Scot, that's me! ;-)
Part of the answer to the problem is to view breakfast in a different way to the traditional UK breakfast. My favourite Scots breakfast in a hotel is smoked haddock, with or without a poached egg. Breakfast in the Germanic countries includes cold meats, cheese and fish alongside its bread - so that rarely poses a problem for me as being allergic to wheat anyway. A good place to look for ideas is in a cook book for low carb diets - just not going to the Atkins levels of no carb, the maintenance level is probably near enough OK.
I like a blog called the Diabetic Mediterranean Diet Blog by a doctor, Steve Parker. He often includes ideas for meals and the most recent was steak, avocado and olives - which he said he ate for his breakfast! A few years ago we stayed a few nights in Singapore on the way back from Australia. The breakfst room had several different styles of breakfast: USA/UK, Far Eastern, Indian, Middle Eastern, European - I was in breakfast heaven! No toast for me ;-)
My trouble is I go to extremes and was thinking NO carbs, as far as possible, but last night I decided porridge would stay. I make it with half water and half coconut milk (the thin stuff sold as is soya milk, I'm dairy free) with 3 chopped dried apricots to add a bit of taste. Lunch not a problem to avoid carbs, evening meal, I'll stock up on veggies. Chocolate.......I do like the odd couple of squares of 80% dark choc ad think I'll allow myself the occasional treat. I'll watch my weight and see how things go, I don't need to lose weight just don't want to gain any. Didn't feel any hunger pangs yesterday, we went out for breakfast, at 9am I had bacon, sausage, beans, mushrooms and oops one piece of w/m toast, I ate nothing then until 5:30 and had not had any hunger pangs. The breakfasts you mention sound delicious!
Thanks for your help with this, much appreciated.
Sue
The official level for "low carb" is less than 50g usable carb per day. A roll here weighs 60g, half of it is carb. I've no idea what a slice of bread in the UK weighs but bread of all sorts is about half carb. There is carb in all veggies but not a lot in leafy one, beans and root veg have much more. You would have to pretty much stick to a diet of meat, fish and fat to get to zero carb - that is difficult for most people to stick to and neither necessary nor a good idea. Cutting out all processed food and cooking from scratch where you can removes an awful lot of carb - it hides in everything whether you think it should be inthere or not. Of course, it will be more difficult for you not eating dairy - for me cheese is a very useful thing!
Thanks Eileen, I tend to cook everything from scratch, rarely I'll allow something readymade if time is tight, even then I go for the healthiest option. I can have goats products and they now do a lovely Goats cheddar type cheese, it's GORGEOUS, not having had cheese for so long I forget how I used to include it! I guess I need to be a bit careful not to start replacing carbs with too much fat. I recently researched into coconut oil and was eating two spoons of it a day (on a cracker)and cooking with it, I love it and it doesn't get stored by the body as fat but used immediately, but I wondered if given pred changes the way your body deals with fat if this would too be altered, I've stopped eating it for now. It's so good for many diseases and is a great facial moisturiser too 
Pred changes the way your body processes carbs, has no real effect on fat metabolism. If you cut carbs there is a limit to how much fat you can eat - you simply just don't get as hungry and if you stop eating when you are full - no problem!