Have just seen a photo of myself, who is that fat old lady? Almost 3 years of steroids and lack of exercise have certainly taken their toll. No matter how careful I am with food I can't seem to lose weight, so now is time for drastic action or hiding from public view. Refuse even to buy clothes now I look a mess in whatever I wear. Oh well moan over as people tell me I'm lucky to be alive!

8 Replies

  • Hi there, I can sympathise with you not from my point, but my husband has the same trouble as you. He's put on 2 stone with the steroids and of course, as you do that, it's harder to get the exercise you need. We are on a continual cutting down of food, I daren't call it a diet because you'd have more success with a diet. Every other night, we have a soup night, just a bowl of soup & a piece of bread. He's losing about 1 lb a month, not much but at least he's stopped putting it on.

    We have bought him new clothes but they all seem so large compared to what he used to wear but my mum did take a jumper 'in' for him the other day, which was quite a celebration.

    I try to bolster his self esteem, try to help him look as good as possible and the important thing is that I love him, no matter what he looks like.

    I hope you have the support of your family and friends. It's a long ol' business this Vasculitis and they need to understand how you are feeling.

    My husband took heart this weekend, with seeing all the war veterans and how stoic some of them are. You can see they've got ongoing problems which you often can't do with Vasculitis but we have to believe that you will improve with good care, good family & friends.

    We're always here when you want to have a moan!!

    Best wishes

  • Isn't it dreadful? My husband had a big birthday when I was still on about 30mg of steroid.....I managed to avoid most of the photos, but can't bear to look at those that sneaked through.

    I'm afraid I gave up on the 'no new clothes' idea, though! My inspiration came from my 89 year old neighbour who has multiple health issues and very poor eyesight....but to look out of the window and see her gardening in yellow stockings and scarlet coat, topped with a large purple hat, really cheers everyone up. So now I try to use colour to keep things going too, and am having a purple phase at the moment. I keep to cotton as much as I can, and look out for tunics and bright shirts on the sale rails in local shops. My sister bought some brightly patterned trousers in a supermarket too, and they look great and are very comfortable too. Also thin coloured scarves as they are useful when my glasses fog up! Avoid beige as that's a really down colour, and keep out of shops that are suitable for your age. It's only your outside age after all - not your inside one!

  • John put a lot of weight on since diagnosis and never been able to shed any weight , but he loves cooking and is a real foody, so there is no chance really. ;-)

    We have started a simple exercise routine this Autumn by going swimming once or twice a week, but not to swim but to exercise eg: simple exercise , running in the water etc, we always go at a quiet time of the day.

    John tries to walk for at least 10/15 minutes a day even if it is just to our local shop and back.

    I buy his clothes and he now likes to wear sleeveless pulleys over his shirts and brightly coloured braces :-) , in lots of different colours. Navy, pale grey, maroon and red. He also wears brightly coloured checked shirts, red, lilac, blue, pink..

    We do know one or two who have joined a slimming club and lost weight, very slowly but they got there :-)

    One lady we know is following a diet very slowly and has lost weight gradually over this last year.

    As Nadine as already said, everyone is here to support you and to be there should you need support at all.

    Susan x

  • Oh I know that feeling! I hate seeing photos of myself, or catching myself full size in a mirror. But there is hope. I've been losing weight very slowly and steadily since April, through being very ruthless in what I eat. I keep a food diary and found although I wasn't eating much I did have some bad habits, and I have been getting rid of those. My weight loss is very slow and steady, but is done despite being quite unable to exercise and still being on a fairly high daily steroid dose.

    I have written here before about my technique. See

    Ideally I need to reach 85kg or so, losing a bit over 30kg (66 pounds). I've now lost a third of that. I have a very long way to go, but am keeping at it :) I am also starting to see some health benefits from my lighter weight - I think my blood sugar had been going up with the weight gain, and causing some issues. And my blood pressure is better now too.

    My body started to fight back against my 1200-ish calories a day, but I reset things by overeating for a week haha! And now I'm back at my 1200 or so and the weight is dropping again steadily. I have also been told by my consultant that the 5:2 fasting diet would be an option for me if need be.

    All the best, and good luck with whatever you decide to do.

  • Also re buying clothes, I boomed in size from 16 (always was big boned) to 24/26, due to steroid weight gain. I can't buy clothes in normal clothes shops, including even M&S. They just don't go big enough. So I now get them from Simple Be, who specialise in clothes for larger ladies. There's a store in my city but I usually buy online by mail order. I carefully measure myself against the size charts and have never bought something yet that doesn't fit well and look great. I get complimented on my clothes, including two very nice coats (one for summer, one for winter), by friends and family. But no, ordinary clothes buying is a problem for me. Luckily I found another way!

  • I know just where you are coming from! I had done quite well on the first lot of steroids (UK standard prednisolone) and all that had happened was that the weight I'd put on anyway with being inactive because of undiagnosed PMR/GCA has redistributed which was acceptable since most clothes still fitted. Then I was switched to Medrol because I moved to Italy where prednsiolone isn't available. That was awful: weight gain, full-on Cushings, mad hair and skin and a superb beard! Which would have been more acceptable had it relieved the pain and stiffness but it didn't and my daughter's wedding came just at that point. I'm only in one photo and I can't bear to look at it.

    My lovely GP took pity eventually and put me onto Lodotra and at the same time I switched to a very low carb diet. I lost weight steadily if slowly (1 or 2 lbs a months, but always downwards). I am still overweight but 36lbs or so less and have my face and shape back. If I eat more than a minimum of carbs I don't lose weight and have also got stuck where I am. I'm wearing clothes I haven't worn for years - a whole new wardrobe without spending anything!

  • Yes, like others I had cushings but joined Slimming World, you can do it on line, and lost weight. More importany I maintained the weight I wanted to be. Don't get me wrong, I looked overweight due to the "stetoid effect" but itt was less stress on my body and bones.

    I'm in a wheelchair so exercise was not on the cards.

    It's a long haul but definitelying worth giving a go.

  • Thanks all for your uplifting messages. It has come at a really bad time for me, bad news but very good consultation at Addenbrooks with a lovely immunologist who treated me as a valued intelligent member of society. This was followed up by a bad consultation at Ipswich hospital with a registrar in the eye dept. who tried to convince me that my field vision test hadn't changed that I had always had loss of central vision .

    I asked to see the previous test for my right eye to compare and had to point out on several occasions that she was showing me the left eye. She wouldn't listen didn't want to discuss, she just wanted to talk at me. I gave up in the end and couldn't wait to get out of the room. I now have to wait 6 weeks to see the specialist, fingers crossed there is no deteriation. I understand I might seem a little pushy but this damn illness frightens me. I need to know the Doctor understands my condition, if not then they will at least listen to me. Beginning to think they dread seeing me and would prefer me to sit there quietly and accept all that is being said.

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