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Archive for the ‘Symptom Watch’ Category

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:

  1. Feeling generally unwell, in pain, and doing less activity means we feel less like eating.
  2. Widespread inflammation includes the stomach, causing sensitivity and pain, meaning that it doesn’t tolerate eating very well.
  3. 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.
  4. Changes in metabolism, brought about by the Still’s Disease, mean that food is not absorbed the same, thus causing malabsorption.
  5. 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.

L

Further Reading

How to Burn Calories Sitting Down

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I don’t want to get too excited, but I have noticed a definite improvement in my pain levels and joint mobility since my Infliximab infusion on Wednesday. As I mentioned before though, I can’t say that this is down to the Infliximab just yet, since I had a big dose of IV steroid at the same time. Saying that, I’ve had plenty of high dose steroids in one way or the other throughout this flare and I don’t think I’ve noticed such a difference before, so… fingers crossed, eek.

Steroids can be wonderful at times, especially for treating acute inflammation; if only they didn’t come with the long list of side effects! Now, it’s not by any means the most serious of these side effects, but the thing that is frustrating me right now is a massive case of the steroid munchies. Anyone who has been on high doses of steroid will know what I mean by this – it’s a constant feeling of being extremely hungry, to the point where you have the gnawing pain in your stomach and feel sick if you let it carry on too long. You want to eat everything and when you are not eating, you are thinking about what is next on the menu; you crave all the wrong things – chocolate, cakes, burgers, fried chicken, pizza, pies, cheese and creamy things… (I’m going to stop before I do a Homer drool) – tasty, but not good for you in the long run. What’s even worse, is that you never, ever ever feel full. I could just eat and eat.

Weight gain is already one of the most common side effects of taking steroids, but most of this is due to water retention in specific areas, which (in my experience) is easily reversible; as you reduce the dosage, you pee more and the weight and added inches drop off. The problem with having this huge appetite associated with the ‘steroid munchies’, is that it is so very easy to over-eat; it’s difficult not to really. With over-eating comes even more weight gain, but this time it is ‘fat weight’ and this will be much harder to shift when you finally reduce the steroids. And I’m not just taking this into account for vanity reasons, but for health reasons too – we don’t need the extra strain on our joints or for weight problems to prevent us from exercising/rehabilitation in the longterm.

I was feeling pretty miserable by this conundrum and the constant hunger gnawing away at me. It’s funny at first when people joke about you eating anything that’s not nailed down plus, as a huge food-lover anyway, it’s nice to tuck and enjoy your meals and treats; but I didn’t want it to get out of control. I decided that the best thing to do was to look into foods that were very filling and that had some nutritional value to them too, instead of wolfing down crisps, biscuits and cakes whenever I had the urge. I also gave myself set times to eat snacks, little and often – breakfast at 8.30am, a snack at 11am, lunch at 1.30pm, snack at 3-4pm and then our evening meal between 6 -7pm, drinking plenty of water and the occasional milky drink in between. (Did you know that very often thirst can be mistaken for hunger?). I was hoping that this would mean I could feel fuller for longer and nip those cravings in the bud.

Some of the foods I found were:

  • Porridge and oat-based cereals, mixed with dried fruit and nuts.
  • Porridge, banana and honey to sweeten if needed.
  • Banana and Natural yoghurt, with honey and/or nuts if needed.
  • Low fat Rice pudding, with a spoonful of jam or fruit conserve.
  • Dried fruit and nut mixes.
  • Dried apricots, prunes, dates and figs (can also add these to yoghurt)
  • Ryvita-type crackers with pate (tuna is my favourite), low fat cream cheese or humous dips.
  • Carrot, Cucumber, Celery with low fat dip.
  • Apple and Cheese.
  • Cheese or cream cheese with wholemeal crackers.
  • Rocket, walnut and apple salad.
  • Couscous and tuna.
  • Flapjacks, preferably with seeds or fruits rather than chocolate/yoghurt topping but hey, treats are still okay.
  • Fig rolls – not necessarily healthy but I’ve developed a ‘thing’ for them 😛

If anyone has any other suggestions, please feel free to share!

My first Graze box

For people reading in the UK, I would also like to recommend a company called Graze, who send  out healthy snack boxes to you through the post, with items ranging from breads, flapjacks, mixed fruit, nuts, seeds, olives, teas, chutneys… well, it’s probably better if you take a look. I had my first box delivered today and am really impressed – you get four different punnets of snacks, each one healthy but tasty and large enough to take the edge off the munchies – it took me an hour of picking to get through one.  I’ve had half of mine today and will have half tomorrow, as I’m due another box on Thursday; but you could quite easily order a box every 4 days or so and have one of the punnets each day.

Another thing I have found useful is a Blackberry app that keeps track of your calorie intake. You do this by entering all of your foods and snacks into it, searching by name / brand etc. The app has a record of calorie and nutritional values for a huge amount of foods and so quickly calculates how much you are eating. It’s also a good way of finding out what you may need to eat more or less of – for instance, I noticed that because of the dried fruit I was eating, I was recording a high sugar level and so need to balance this out by swapping some fruit with the more savoury choices above. The app I’m using is called ‘MyFitnessPal’ but there are others too and even better, they’re free. For those who don’t use apps, there are websites that do exactly the same thing too – the one I’m most familiar with is LiveStrong’s The Daily Plate.

With all of these things in place, I feel I am finally conquering the Steroid Munchies and can at least make sure that I keep my food intake within reason. Yes, I still get the occasional craving and I haven’t totally banished the treats (that would just be silly) but I am more in control and feel like things aren’t going to get out of hand without me even realising.

Everything in moderation as my Mum always says!

L

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{Backdated Post}

Today was another quiet day on the medical front, with more of the same as yesterday; mostly spent passing time with my wonderful visitors. Since my boyfriend is my main carer at home, they allowed him to stay longer each evening to get me washed and setted in to bed, which was better for me and took some pressure off the nurses.  Outside of visiting I had plenty to keep me busy by getting to grips with the bedside TV/Internet/Telephone that had just been installed in my room, and which turned out to be a lifeline for me over the next few days.

Symptom Watch: Still’s Rash

I thought I’d use this time to talk about something that everyone during my hospital stay found fascinating in terms of the Still’s Disease itself and that is the Still’s Rash.  The rash became very prominent during my initial stay at Southport and remained so throughout my stay at Manchester too. Junior doctors, nurses and Rheumatology specialists kept popping in to have a look and even those without much background in Rheumatology were intrigued and asking many questions. I was pleased that people were taking an interest and even I feel like I have learnt something new about my rash and what it means.

In my experience, the Still’s rash tends to appear at the very start of a flare up, alongside other systemic symptoms such as fever, headache, loss of appetite and fatigue; it is usually a good indicator that things are getting worse and that joint involvement will shortly follow. The rash itself manifests in different forms, but I am convinced it is all the same rash:

1.

Two examples of the speckled rash that I get with Still's Disease - On my feet and the back of my hands.

Faint and speckledy, as if under the surface of the skin, and more visible in certain lights, such as fluroescent lighting, as in the above photographs. This type of rash is usually widespread and appears across the backs of my hands and feet, the bottom of my arms and legs, and across my chest and abdomen. It can often look like the type of rash you get with an allergy but is not raised, hot or itchy. This is usually how my own Still’s rash makes its first appearance, especially if I’m experiencing only ‘minor’ Still’s issues.

2.

An example of the hot, red and angry patches that appear during Still's flare - here the focus is at the very top of my arm.

Angry, red and hot patches that spread across the tops of my arms, thighs, chest and cheeks. These appear when I have quite a high temperature and/or a lot of inflammation happening in my joints (separate to the joints themselves being hot and red though).  The patches are usually well-defined, with just one at the top of each limb or on each cheek. The heat that comes from these is amazing and will quickly warm anything used in an attempt to cool them down. I picture it as an outlet, to release the heat from fevers and the inflammation that is rife within my body. This type of rash usually occurs mid-flare, at the height of disease activity.

3.

Photos showing the purple smudges under my eyes and the 'blotch' type rash that appears on my face, neck and chest.

Random purpish-red smudges and blotches that appear anywhere, but particularly under my eyes and on my face, neck and chest; they are not raised and do not itch but can feel warm at times. This type of rash seems to be related to my level of pain and fatigue more than anything else, although this is just a theory. It is also usually other people that point it out to me, rather than me noticing it myself. It can come and go, or change appearance, quite quickly.

It was only during this past hospital stay that any connection was made between this type of rash presenting and my level of pain. The Registrar noted that I had the redish-purple smudges beneath and around my eyes, as well as elsewhere, every time he saw me in a lot of pain and so I began to monitor this with the nurses. Lo and behold, each time I requested Oramorph or was due my Morphine, the smudges would appear! It felt like our very own experiment and discovery (highly scientific of course!) and my Rheumy was quite interested to hear about the possible connection too; I wonder if anyone else has noticed something similar in their own rash pattern?

As I said earlier, these rashes appear early on in my flares and are a clear sign that things are going to go downhill with the Still’s Disease. Quite often, if I increase my dose of Prednisolone for a short time on the rash presenting, I can prevent things from getting any worse and keep the joint involvement at bay. So, you can see that it can be quite useful to learn and understand your body’s own rash patterns, (I can’t say that the pattern I’ve described here is the same for everyone). Think about the times when your rash is most prominent and what is happening to your body in terms of Still’s Disease at the time – are there any triggers, any differences in the rash’s appearances between symptoms, is the timing significant? Maybe keep a diary to record details about your rash for a while, especially if you are newly diagnosed, until you start to see a pattern that allows you to use it to your advantage. It might be that there isn’t a pattern for everyone, or at least not beyond it presenting alongside other symptoms, but it is at least worth looking into.

Once a flare does take hold and progress into joint involvement, my rashes and other systemic symptoms tend to gradually ease; perhaps not altogether, but they become less troublesome than the joint problems that follow. Again, I am aware that this may not be the case for everyone, just my own personal observations. If you wish to share your own with myself and others, please comment at the bottom of the page.

I’d be really interested to hear from other people about their own Still’s Disease rash/es; in fact, I have wondered if it might be a good idea to put together a collection of images to compare the differences and similarities between individual cases. A sort of project into Still’s Rash that we could eventually use as an information resource.  If anyone has any questions or thoughts on this, please feel free to email me at stillslifeblog@gmail.com

I am also going to include a brief poll here:

L

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Call it what you want: Crepitus, Joint Cracking, Popping, Grinding, Crunching, Snapping, Clicking… we have all probably experienced it in at least a couple of joints, if not all.  I decided to look into things a bit more and write a post about it after noticing a definite increase in the amount of crepitus I’m experiencing myself at the moment. Unfortunately, I think I’ve ended up with more questions than answers!

Crepitus of a joint can occur in Rheumatoid and Osteo Arthritis and is defined as the sound and sensation experienced when the cartilage around the joint has eroded away, reducing the joint cavity space and causing the surfaces to grind against each other.  Most of the time it causes no pain and isn’t a sign of anything serious (but a release of gas build-up in the synovial fluid), but when it is accompanied by pain does it become a reason for concern?

In Rheumatoid Arthritis crepitus can arise when ‘inflammatory tissue invades the cartilage and bone surface and causes cartilage and bone tissue destruction’, in which case, crepitus can be considered a clinical sign of joint surface destruction. And this is what we all want to avoid. So does an increase in joint sounds signify that things need to be controlled better, or, by this point, is the damage already done?

You would think that if it was a significant symptom, it would be evaluated alongside other symptoms in clinical practice, but I know it’s not something that I have ever really discussed with my Rheumatologist, since other symptoms always seem more relevent. However, my worry is that sometimes we ignore what is right before us, the most obvious things, and I wouldn’t like this to be one of those times. If crepitus really is a signifier of joint damage and it is getting worse, then obviously I need to do something about it.

I only found minimal information on the subject in my internet research today but I’ll post links to the most useful information that I have found at the bottom of the page. Any further information anyone has would be greatly appreciated.

A couple of final things though. There were two suggestions that kept cropping up as ways to reduce crepitus (in addition to disease control) and they were:

  1. Increase your intake of Omega-3 through oily fish and supplements.
  2. Gentle, low impact exercises to help keep joints mobile – in particular swimming.

So, it looks like I’ll have to put up with the snap, crackle and popping for now.

L

Links:

Patient Guide To Joint Cracking  (Johns Hopkins Orthopaedic Dept)

Joint Popping (Washington Orthopaedics)

Joint Cracking and Popping; Understanding the Noises Associated With Articular Release. (An Osteopathy-based article but still interesting)

Painful Cracking in Joints During Exercise  (Live Strong)

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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,

L

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Sore throat is mentioned in the majority of symptom lists for Still’s Disease but to me this seems very unspecific.  Since I currently have what I would describe as ‘Still’s Throat’, it got me wondering what exactly it is and how it relates to our other symptoms. One article states that:

“The sore throat of AOSD has been described as a severe, constant burning
pain localized to the pharyngeal area. A review of 341 cases revealed 69% of
patients experienced sore throat early in the disease course”

The few people I have spoken to with Still’s Disease seem to agree that it is not the same as an ordinary sore throat, with the pain being more of a burning / muscular type pain.  For me right now it is predominantly on the right side and makes swallowing and yawning difficult.  I can’t see any inflammation but when I have tried to ‘touch’ the painful area it seems also to effect the roof of my mouth; the throat/neck area on this side is also quite tender.  These things lead me to wonder if Still’s throat could be down to one of the following:

  1. Swollen glands, although this would also suggest some underlying infection; but perhaps it can also occur as a result of the over-active immune response that is going on in our bodies during times of active disease.
  2. Some sort of muscular/joint inflammation in the area – possibbly deferred from the jaw?  There is actually a tiny joint in the throat that can be effected by arthritis, called the cricoarytenoid joint.
  3. Some other unknown cause – suggestions on a postcard please.

I did find an article about severe sore throat being a presenting symptom of Still’s Disease; however, I can only access the abstract  and not the full paper… perhaps I can get my medical friend on the case.

I know it’s not the most major of symptoms – more of a niggle than anything else – but I hate not having answers and would love to solve this little mystery.

L

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