Ongoing weight loss success: Weight plunged... - Vasculitis UK

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Ongoing weight loss success

vivdunstan profile image

Weight plunged overnight from 100.0kg to 99.4kg, after my latest fast day, so I got my next mini bottle of champagne tonight for passing another 5kg mark. On Sunday it will be exactly 1 year since I decided to try to lose weight by reducing food intake, initially by eating 1200 calories a day, and then more recently through the fast 5:2 diet. I also lost a lot of weight in an unplanned severe illness over Christmas and New Year (cold went really bad), when I could barely eat anything for many weeks - not exactly the best circumstances to lose weight in, but it was a bit of a bonus for me! A year ago I weighed 120kg, and am now under 100kg. 1kg = 2.2 pounds so nearing 3.5 stones lost so far. No exercise involved. Body Mass Index has dropped from nearly 44 to just over 36. Fat % plunging massively. Still a long way to go, but good progress. And it's staying off, as I hoped it would, now that the daily steroids that are keeping me alive but also cause huge weight gain are at a much lower level than they were for many years. I'm at 10mg steroids now, and unlikely to drop much below that, but at least I'm starting to lose the weight, and keep it off. I have cerebral vasculitis, since 1994, when I first fell ill at age 22.

20 Replies

Well done Viv. 

Well done you! 

I am am really struggling - just dropped to 16mg steroids after 10 months mainly 20 -40 mgs, not sure at what point it will  be easier to lose it but your post gives me hope. Put on about a stone now ..... 

vivdunstan profile image
vivdunstanAdministrator in reply to lesley2015

Yes I was very high steroids for a decade, after a major relapse. And that's when I put on most weight, way more than when my treatment started back in 1998 with very high steroids for a shorter time. But once I'd dropped under 15mg steroids I was determined to try to lose some weight, even though I knew it would be hard, requiring in my case constant careful reducing of food intake, because exercise wasn't an option. I did not expect to do so well. Have more to lose of course.

Best of luck with your weight loss when the time comes. I've posted here before about how I'm going about this, in terms of food eaten, keeping a daily food record etc. It might also be worth talking to your GP and/or consultant before you start any diet. Both mine supported me.

that's a great acheivement. I'm always struggling with my weight so i sympathise. Im trying the 5.2 diet at the moment. It's hard and the weight loss is very slow for me too. The occasional bouts of munor illness in between helps reduce my appetite. Im only about a couple of pounds off my target now so Im pretty determined. 

Good luck 

vivdunstan profile image
vivdunstanAdministrator in reply to Katie18

I've only been doing the 5:2 diet for a month - most of my weight loss over the last year was on the 1200 calorie a day approach - but am finding it easier as time goes on. I try to pick really tasty meals for the evenings of fasts. Low calorie (about 400 calories), but filling, usually with rice, or pasta, or some potato to help. I'm also using ready meals cos they are just so much easier for me with my disabilities, but get very tasty ones in certain supermarkets. Basically I want a good filling meal that I will feel satisfied with, and be eating for ages. Though I do tend to get hungry by 9pm again on fast days! I then might have a tiny snack from my Graze box, maybe no more than 50 calories worth. And that keeps me going until the next morning. Only other things I eat on fast days are a small biscuit in the morning and a yoghurt (about 100 cal) with my dinner. I generally aim for about 600 calories a day on the fast days, because any lower is just too tough for me. But that sees me losing weight nicely.

Good luck!

Well done and thanks for sharing.

Well Done Viv that is a brilliant achievement ! It is very hard to lose weight under these circumstances you have used amazing willpower :) Diane x

Well done!  I too am struggling to get some of this Prednisone weight off.  A few months ago I developed severe abdominal ain and drop in appetite so have lost a little but as you said this is not the best way to lose.  Recently I feel the cravings return and the battle beginning again.   Could you please tell me what the 5:2 diet is, I've never come across it.  Thank you. 

PMRpro profile image
PMRpro in reply to Doralouise77

It's the one known as the 5:2 Fast Diet that Michael Mosley did a TV programme about some time ago. Google it and you will find all sorts of stuff, from explanations to cookery books.

The principal is that on 2 days of the week you restrict your meals to 500 calories in total although the rest of the week you can eat normally. The 2 days are best split - say Monday and Thursday, rather than 2 days together. You know then that you only have to get through "Today's diet day" so you don't really ever feel your diet is unending and hard to stick to. On those other days you can eat "nice" things that are often banned in diets.  

You aren't starving on the "fast" days either - using the right recipes and foods you can get a big plate of food that won't leave you feeling hungry afterwards - non-root vegetables, salad leaves or a big bowl of clear vegetable soup are all very low in calories. You can drink all the water and other low calorie drinks you like.  

I found it really did reprogramme my "appestat" and within a couple of weeks I simply wasn't as hungry on any of the days and was satisfied after half a plate full. Using it and low carb I lost 38lbs while still on pred - it was slow but it worked. And it has almost all stayed off. I have just had to go back to 15mg pred and so far haven't put on an ounce after nearly 3 months at 15mg.

Doralouise77 profile image
Doralouise77 in reply to PMRpro

Thanks very much PMRpro, I will look it up.  I have basically no appetite all day long, actually find it difficult to get food in during the day, but come the evening I get hungry and have cravings especially for carbs.  I had no idea at all it was the Prednisone until I read other's experiences.   I've always eaten very well, been a vegetarian for 30 years and never experienced cravings for carbs or junk.  The cravings are so strong I can’t sleep without giving in to them.  I wonder if there's anything to curb this.  My rheumatologist suggested Ovaltine at bedtime,  which we always had as children,  but it didn't seem to help much.  Thank you.


PMRpro profile image
PMRpro in reply to Doralouise77

I had that effect before I ever went onto pred - I had PMR for a good 5 years before being given pred. I would sit there in the afternoons knowing I wanted SOMETHING, I didn't know what except it was something sweet and carby and it didn't go until I'd eaten something that fitted the bill. All the carrots in the world to occupy my mouth were useless! It absolutely wasn't me, I hadn't eaten sweet stuff for years. Of course, with being less active I put on weight - none of the typical weight loss that at least prepares you for putting it back on with pred!

Within hours of taking my first dose of pred not only could I move again but that craving had gone - the opposite of most of you! However, I did find the 5:2 diet helped reduce the "I need" food feeling but cutting carbs dramatically did it even more. I can only assume that something is either making BS fall to trigger insulin production or just triggering the insulin production. This sends your BS down - triggering the cravings. Take as much carb out of the equation as you can and the insulin problem is also reduced. Take the insulin out of the equation and it also reduces the deposition of fat - all theoretical since I haven't got the opportunity to check the blood samples, but it fits all the events.

vivdunstan profile image
vivdunstanAdministrator in reply to Doralouise77

The official 5:2 fast diet information page is at

Which outlines the process, and also includes support forums.

Though I would recommend reading the accompanying book before starting, so you better understand the process.

vivdunstan profile image
vivdunstanAdministrator in reply to PMRpro

I've only been doing the 5:2 diet for about a month, but am finding it easy. I eat a good 400 calorie dinner in the evening, and that with a breakfast in the morning and a yoghurt or mousse dessert at dinner (about 100 calories) I find I am not too ravenous. And the weight plunges. Eating about 600 calories total on 2 days of the week.

But before then, for about 9 months, I was losing weight very steadily on about 1200 calories a day.

So I recommend both options.

vivdunstan profile image
vivdunstanAdministrator in reply to PMRpro

I've a very different approach, and am not going low-carb, but like fast day meals that have carbs in them to fill me up. So e.g. rice, pasta or potatoes. But we are all different. I just don't find going low carb is necessary for my weight loss, and I've now lost 46 pounds, on hefty steroid doses. Low calorie is more important for me, as well as something I can stick at long term. So I still get my weekend takeaways (pizza tonight, Chinese tomorrow!), and meals out, and alcohol.

PMRpro profile image
PMRpro in reply to vivdunstan

I started with the usual dietician advice and low calorie - didn't get anywhere in over 6 weeks. Then I tried low carbs and lost a bit but was hungry - it was the 5:2 that got me onto the track of not being hungry. But it was still desperately slow and I cut carbs as well - because I noticed that any time I was eating any amount of carbs - such as when we had visitors or were out a lot - I lost nothing. It isn't a trial for me, I rarely eat bread and cakes anyway as I'm allergic to something in modern wheat - gives me a horrible itchy rash. Spelt, kamut and Canadian soft wheat, rye, all no problem but they aren't used a lot in commercial products. Easy to fall into the trap of using gluten-free products to avoid wheat - calorie bombs if ever there were!

That stayed the same over the entire couple of years I was losing weight - more carb than usual and no weight loss at all, and even on a really good week I lost maybe half a pound. Since last summer I have put back on a couple of pounds - but am steady at that, whatever I do. Even nearly 3 months back at 15mg hasn't shown a blip. 

I would like to lose a bit more - but I'd have to give up even more I suspect. I have my waist back


vivdunstan profile image
vivdunstanAdministrator in reply to PMRpro

Glad you've found something that works :) I'm lucky that low cal works for me. I lost masses over 9 months on 1200 calories a day, and it's only recently I've switched to 5:2 to shake things up a bit. The earlier low cal diet probably made it easier for me to go to 5:2 because I was already used to eating reduced amounts. It's working anyway.

All the best.

vivdunstan profile image
vivdunstanAdministrator in reply to PMRpro

Just following this up again to echo the advice re splitting fast days. Some people can do their fast days on successive days, but I think they are rare. Personally I aim for Monday and Thursday, but with some flexibility depending on what is going on in my week. So I might move the Monday to Tuesday, and/or the Thursday to Friday some weeks. It's not a fixed rule. Because I'm using low-cal ready meals it's perhaps a little more complex for me, because I need to buy in things for certain days. But I still find I can move things around if need be. Main thing is to have something that is sustainable long-term. And take it a day at a time. The nice thing with fast days being spread out is you just have to get through a fast day at a time, and can look forward to more food the next day. Which makes it a bit easier psychologically.

Well done viv - hope you enjoyed your champers! I love the wiggle over Christmas - and the way you actually have stuck on the same rate of weight loss overall...

vivdunstan profile image
vivdunstanAdministrator in reply to PMRpro

Thanks! The wiggle over Christmas was because I was severely ill for about a month, and not eating almost anything at all for most of that time! So unlike a usual Christmas weight change I lost masses, suddenly, then regained a little as I started to eat again. I actually had my Christmas meal on 13th January 2016, by which time I was just about eating right again ... But yes, it's amazing that when I restarted properly I was still following the same trend line :)

Good to hear the different strategies,  thank you, and once again we see how individual each person is.  In the past pre Prednisone days I always lost weight easily on a high protein diet, never finding omitting carbs to be a problem.    Now it's all I want to eat unfortunately!  And never feel satiated unless I have them.  I used to have great willpower as well which seems to have gone completely out the window.  I recently did a 3 day fast just to kind of kick start things but lost no weight.  Prednisone fat is so much harder to get rid of I think :-)

Cheers,  and good luck everyone! 

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