I’ve mentioned weight a number of times in past posts but never really discussed it in its own right. Yet recent conversations and other blog posts have made me realise that it is a common problem amongst people with Still’s and so worth discussing.
Still’s disease can effect a person’s weight in various ways. For me, weight loss was one of the earliest signs that anything was wrong and it soon became a significant one. I had a lot of stomach pain and totally lost my appetite. I couldn’t face food of any type; thinking of foods made me feel physically sick and so I practically stopped eating. When I did eat, I would take a nibble and feel overfull then almost immediately vomit, which put me off wanting to try foods even more. Any food that did manage to stay in my stomach went through my system very quickly, without any nutrients being absorbed – therefore causing Malabsorption. Eventually, I couldn’t even sip water without vomiting and was hospitalised, weighing under six stone (about 40kg). My doctors even suspected Crohn’s Disease. They gave me IVs to replace lost fluids and electrolytes, as well as protein shakes, although it wasn’t until the Still’s was controlled that I was able to stomach those.
This loss of appetite and weight was obviously connected with the Still’s, it came with the flare and went once that flare was managed. So what caused it? There are few possibilities, including (but not limited to) the following:
- Feeling generally unwell, in pain, and doing less activity means we feel less like eating.
- Widespread inflammation includes the stomach, causing sensitivity and pain, meaning that it doesn’t tolerate eating very well.
- Swelling of internal organs such as the Liver and Spleen, due to inflammation and immune responses, results in a feeling of fullness and eating less.
- Changes in metabolism, brought about by the Still’s Disease, mean that food is not absorbed the same, thus causing malabsorption.
- Limited exercise causes muscle wastage, another element of weight loss.
Another cause of weight loss can be medication; most Still’s medications can potentially cause stomach problems, it’s on every side effect list. The worst culprits for me have been Methotrexate (a chemo drug) and Azathioprine. Cyclosporin makes me feel queasy, but that could be the awful smell / taste. There isn’t a lot you can do when there are such reasons for losing weight, apart from maybe eating a high protein diet of small but regular meals, supported by calorie enhancing nutritional shakes such as Complan, Build-up, Paedasure, Ensure and Fortisip. Yet, in my own experience, no matter how severe the weight loss I have usually regained normal weight once the Still’s itself was controlled or the medication stopped. The vomiting, upset stomach, nausea and loss of appetite gradually disappear; especially with the help of Prednisolone, which has the effect of increasing appetite.
Which brings me to the next issue: Weight gain.
And one of the biggest causes of weight gain is of course, Prednisolone and/or other forms of steroids used in Stills treatment, such as Cortisone joint injections and Hydrocortisone IVs. Prednisolone is a wonder drug when it comes to short term control but it has a looong list of side effects, including the Steroid Munchies and Water Retention, both of which contribute to weight gain. The higher the dose and the longer you take it, the more significant the weight gain is going to be. This weight gain is often disproportionate to the individual too and tends to affect particular areas: there is the typical round moon face (also known as pred-face), a collection of fluid and redistributed fat on the back of the neck, called ‘buffalo hump’, a broader upper body in general and then the spare-tyre-pot-belly-bloating of the abdomen. Some people can suffer Oedema of the lower legs as well, but that one at least isn’t a certainty – the previous are pretty much guaranteed.
Me on a tiny dose of Prednisolone and then on a much higher dose.
There isn’t much that you can do to prevent water retention, apart from drinking plenty of water and limiting your salt intake. They don’t recommend water tablets unless you get severe oedema, although it is tempting. It can be really difficult, upsetting even, to see a different, rounder self staring back out of the mirror every day; it is something I’ve battled with constantly since a teen. The good news, is that the water retention will disappear almost as quick as it came on – as you reduce your dosage, you will probably find yourself peeing four or five times in the middle of the night, but it won’t matter so much when you realise you’re slimming down. Before you know it, you’ll be looking at your old self in the mirror again.
Another cause of weight gain will probably come from the steroid munchies, which can be difficult to fight. Prednisolone (and potentially Biologics now too!) makes you crave the wrong foods – sugar, cakes, creams, chocolate, burgers, pizza, fried chicken and so on; plus it makes you want to eat BIGGER portions too, because of that constant empty feeling. My only advice here is to try and stick to filling foods (discussed in this previous post), such as porridge oats, bananas, etc; eat smaller meals but eat four times a day instead of three; know your own limits, your stomach may be giving you the signs that it is still hungry but you should have a realistic idea of when you have eaten enough and stop; drink plenty of water – thirst can often be mistaken for hunger; eat healthy snacks throughout the day but allow yourself a small treat too, or the craving will only get worse.
It is very easy to get carried away with your eating habits on steroids; nobody really believes the MASSIVE difference it makes to appetite until they experience it themselves and the bad news is that this ‘fat’ weight gain is much harder to reverse, especially if you are not very active.
Which presents another problem that leads to weight gain.
Restricted levels of activity.
If your Still’s Disease is active and joint involvement / fatigue is reducing your mobility then of course you won’t be burning the same amount of calories as a healthy person. When you have reduced mobility, you can actually reduce the number of calories you intake daily to counteract this – they advise 1400 for women and 2000 for men. Of course you may not be able to do much exercise, but do try and maintain as much movement as you can without causing yourself too much pain: shrug or circle your shoulders, roll your neck or turn from side to side, stretch fingers, bend and straighten legs when sitting, circle ankles and so on. It’s a fact that even the smallest movements performed on a regular basis when sitting can burn a lot more calories than just sitting.
Exercise in water is even better if it is an option. The water supports the body and takes the pressure off joints, while also providing resistance. This means even the smallest movements can burn substantial calories! Treading water, for example, burns 3-4 times more calories than walking on land. The warmth of a heated pool can also soothe aching joints and muscles, an added bonus!
Restricted levels of mobility can also mean you feel less up to cooking meals from scratch and may be tempted to rely on convenience foods. As hard as it is, try not to. Use good days to cook meals from fresh that you are able to freeze in sandwich boxes to reheat at a later date, when you are less able. If this isn’t possible, enlist help from friends, family or even a carer to cook batches of freezable meals for you. Try and eat plenty of protein, as that helps maintain muscle mass, something you could really do with keeping – not only does it stop limbs from becoming atrophied and weak, but it helps burn additional calories too.
Remember, although it is not easy maintaining a sensible weight with conditions such as Still’s Disease, it is important that we try. Carrying extra weight is only going to increase the stress on our joints and internal organs and could also lead to further health issues – and surely Still’s is more than enough for anybody!
If there is any aspect you think I’ve missed in talking about weight that you feel would be worth including, let me know.
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