3 month progress report on weight loss regime

[vivdunstan]

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.

[PMRpro]

Congratulations! It is so rewarding when you see that downward trend isn't it and you are another proof that it IS possible to lose weight while still on pred. You just have to be dedicated and consistent.

The dietician I saw made me keep a food diary to see what I could change but being a Brit living it Italy did make her suggestions less than appealing! I have done it by limiting carbs drastically - I'm allergic to something in wheat starch so that does make things much simpler! Gluten-free cake and bread here is most unappealing (Jaffa cakes in the UK is a different matter) so I got used to living without that sort of starch a long time ago. I also used the 5:2 diet for a while and it was very helpful. While it didn't increase the speed of weight loss, which is slow at about 1-2lb per month, what it did do was help re-educate my appetite. It wasn't massive anyway but it worked very quickly to make me less interested in a snack at any time and be totally satisfied with 2 meals a day with no hunger pangs between. I do snack on a handful of nuts or a few cherry tomatoes but that really is it. And I eat very little fruit - loads of salads and veggies instead.

All the very best for the next 3 months!

[Lupylass]

A huge congratulations for your success so far! I really struggled with my weight when I was on anything more than 5mg of prednisilone, so I'm full of admiration for your progress!

People who haven't used the devil drug pred just don't realise what it does, not only to appetite but to the overall fat distribution on your body. It's a necessary evil though.

For me exercise and eating clean (and gluten free as I have coeliac disease) works well. Without exercise I struggle to lose weight, so again, hats off to you for managing to do this despite your ongoing severe vasculitis preventing you from doing exercise and so many other things, I should imagine. Go girl! 💪🏻😀

[Hidden]

I'm very impressed with your charts. I really believe that examining and recording what you eat and your weight helps motivate weight loss. I know from personal experience I do better when I track my own. I keep a food diary and record my weight weekly on a tracker. Congrats on your weight loss.

[Hidden]

Hi Concerned,

Do you have Vasculitis or do you just like to hang around forums posting obscure comments about diet?

Viv has posted a really positive story and all you can do is make a negative comment.

[Hidden]

Informed by who or what ? You have provided no links or clinical rationale for your statement. Do you have Vasculitis or know anything about Vasculitis ?

[Rowmarsh]

Hello Vivdunstan

That is brilliant! You should be proud of the achievement. Steroids are a necessary evil but if you can loss weigh on them you have cracked it! I have been on a dose of between 5mg - 30mg depending on my eosinophil count and asthma flare-ups but for the last 9 years I have managed to maintain my weight at 75kg with a height of 1.75m. Because of my newly diagnosed CSS related cardiomyopathy I'm inactive now so I am trying to keep snacking to a minimum and using my Nutribullet for fresh fruit supplements to fill me up and it appears to be working. As an aside, the Nutribullet has given me more energy levels because I am blending, spinach, avocado, pineapple, strawberries, kiwi, banana and black grapes with a splash of Alpro hazelnut milk - yum yum and nutritious!

[Rowmarsh]

I think the majority of people on this forum understand and manage vasculitis far better than any NICE guidance can give. The NHS on the whole knows little about vasculitis and until they stop acting as if they do suffers may stop dying or being disabled my incompetent doctors due to misdiagnosis. Vasculitis is worse than cancer because it is sinister and underhand in its progression. That said and back to the original post, I encourage all suffers to look at healthy diet and lifestyle and definitely alternative treatments. For instance, I have been taking a high EPA content fish oil for years called Vegepa as it has been proven to help (not cure) depression and aid the immune system.

[vivdunstan Volunteer]

That RA reference is hardly compelling. They conclude that medics should "Inform people with RA who wish to experiment with their diet that there is no strong evidence that their arthritis will benefit." (R44)

And anyway rheumatoid arthritis is not vasculitis. They are different diseases, and the research cited in that NICE document does not apply to vasculitis. Some arthritis patients develop vasculitis as a secondary disease, but it is a different disease process from arthritis. Most vasculitis patients have no experience of arthritis at all. Like me, with primary cerebral vasculitis - in my brain.

I was quite annoyed by your original comment. You picked up on small things I had mentioned - just a tiny part of my diet, only eaten occasionally. Then you fixated on those, and generalised from them, commenting on how they might be bad for vasculitis, which you have still given no supporting evidence to back up. And you still don't seem to have any knowledge of or experience of vasculitis. Which is not rheumatoid arthritis, or diabetes. It is a very different, extremely rare disease, little understood as Rowmarsh said by medics, let alone NICE.

The biggest danger, as I have said on this board before, that vasculitis patients tend to face in dietary terms is massive weight gain from long-term high-dose steroid use. In my case I have gained over 30kg that I need to shed, and have been quite unable to lose it before while my daily steroid dose has remained extremely high (unusually high for vasculitis patients) and my disease has been out of control. Losing this weight is the priority, and anything within sound sensible measures that can do this should be supported. As I've said my diet is supported by my GP and my consultant. The best thing is it something I am finding I can sustain long-term, without drastic major changes I could not keep up. And that should be supported I think, rather than criticised.

[vivdunstan Volunteer in reply to vivdunstan]

Am probably a bit grumpy in that response, so apologies Concerned. I do appreciate your congratulations comment! But my diet is a mix of different things, and I'm already making an informed choice to try to lose a gigantic amount of weight (nearly 5 stone).

But I'm also very concerned that vasculitis patients should receive advice appropriate to their disease. And things for other diseases - like arthritis and diabetes - are not helpful.