I haven't posted about this here before, but I have posted on the Vasculitis UK Facebook page.
I've been on steroids since 1998, and generally very high doses since a big relapse in 2004. My weight has gone up over that time from about 80kg to nearly 120kg. It was stable for a long time, but I was horrified in mid April at a hospital appointment to see it starting to creep again, so was determined to do something about it.
On the downside my steroids were still high. As I write this they're still at 12mg, and I'll probably be unable to drop much below 10mg, ever. So I'm going to be on a fairly hefty dose for life, which would normally be a big danger in weight terms. Also exercising isn't an option for me. I've tried it in the past, but fatigue is so great, and I get a big rebound of being knocked out. So it's not something I can sustain. And I can hardly walk - I have a blue badge for good reason - due to my cerebral vasculitis, which is very MS-like. So even that isn't an option exercise-wise.
But I was encouraged by my husband - healthy - who has been slowly and steadily losing weight for 18 months. Not by any extra exercise, or radical eating, but by moderating his portion sizes, and watching his snacking. We eat ready meals for convenience most of the time, and he's dropped from 97kg to about 80kg now despite that. So I thought I'll give this a go.
Well, it started on 17th April 2015. I started a little notebook - tiny, compact one - writing briefly what I ate each day. Not calorie counting, but a record of what I'd had. So e.g.
Dinner (Steak hash)
Biscuits x 2
Basically enough so that I could recognise afterwards what I was eating. I realised quite quickly that as I reduced my meal sizes I was in danger of snacking too much to make up. Because of memory problems from my brain vasculitis I could easily walk back into the same room 5 minutes later, and eat something, and not realise I'd had that snack just before! But now I had an eating record, and was being good about recording stuff, and could see where dangers lay.
I also allowed myself from the start to snack on healthy things without recording them in the diary - basically to encourage good habits. I get a fortnightly Graze box of healthy snacks - nuts, seeds, dried fruit etc. - in the post, which I can make last for ages. You can get similar healthy snacks easily in supermarkets and local shops. Though be careful about eating too much fruit - it can be very high in sugar, and calories, which can surprise people. And I allowed myself to munch on slices of a healthy white bloomer - great for fibre, and not too big slices, so not going to do too much damage.
In terms of ready meals I'm probably tending more now towards more filling ones, but although I'm not calorie counting I'm probably still eating about 500-700 calories for my main course at night. In terms of healthier more filling meals I'm likely to choose pasta, or rice dishes, or have a baked potato with filling. I know some people minimise their carbohydrates, but I find they fill me well, and don't do damage.
So that's been what I've been doing. It took a few weeks to kick in properly, particularly as I spotted (thanks to food diary) naughty snacking, and adjusted to fix that. But within a month I was losing about 0.5kg (or 1 pound) a week. And in the 3 months since I started I've now lost about 5kg (or 11 pounds). I expect this weight loss to take a long time to reach my goal. I'd be happy to get to 100kg, but 85kg would be getting more towards a not diabolically unhealthy weight. But I'm taking it 1 day at a time, and expect to probably need at least a couple of years to try for this.
Because I've been doing this for 3 months now I can start to see changes in terms of my eating, and how I feel about food. I stop eating sooner, fuller, and can cope better with those times between meals when I might be a bit hungry. I really enjoy my meals. And I'm making better eating choices at times. So I think it has made a big difference to my eating habits, as well as helping me to lose unwanted extra weight.
The attached chart shows my weight loss since we got our new scales at the start of June. I weigh myself most days on waking, and record the weight and also body fat percentage, which my scales do, and is nicely dropping. It's another way of gameifying the weight loss progress! My weight fluctuates a bit due to female monthly things - generally those times in the chart above the line - but is going in the right direction.
I've managed this so far without any outside help from e.g. WeightWatchers or Slimming World. But I have my husband who is a huge support, and is trying to lose more weight himself (aiming for 70kg). But I have heard great things from people who have gone to the weight loss organisations.
Obviously anyone considering a new weight loss regime should probably talk to their doctor - GP or consultant - to get advice. My vasculitis consultant was really pleased, but also said that if my weight loss flatlined than the 5:2 fasting diet would be an option I could consider, which is great, but hopefully it won't come to that. My GP was also very supportive.
A question on behalf of someone else, asked this morning by email, a new member to Vasculitis UK
First time here - GP thinks I have Vasculitis
Uveitis treatment opinion please 
