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Archive for July, 2012

Once again, I could tell that it was time for my Infliximab (Remicade) infusion. A few troublesome joint were playing up and I was starting to feel more tired. I’ve got to the point where I look forward to my infusion day and I felt pretty positive today too.

I arrived on the ward in the morning and was given room number 12 – one I haven’t been in before (fascinating fact!) My nurse Lyndsey came and fitted my cannula and took my bloods; thankfully, she got it in first time, but then she knows my veins so well by now she could probably do it blindfolded. She took my obs too; my blood pressure was low, heart rate and temp a bit high, nothing unusual for me though really. So we settled down to watch the Olympics on the TV, while we waited for the blood test results to come back.

Lyndsey came in a while later and told us that my blood tests were back and my inflammation markers were all raised, so we needed to wait for my doctor to come and see me and give the go ahead before I was hooked up to my IV. These markers are usually a good indicator to disease activity but can also increase with severe infection. I’d say I was feeling generally well though and so this result came as a surprise to me. Yes there were a few niggling issues, but I wouldn’t have thought there was anything significant enough to cause such an increase, especially in my CRP, which was 50.

My doctor came and saw me a little while later and agreed I was looking really well. I mentioned the few niggles that I thought may be contributing to the raised inflammatory markers – the lower leg pain, elbow stiffness, finger stiffness, stomach pain and migraine; but he didn’t seem convinced that any of these would be causing such an increase.  We wondered if it was just that I was well ‘due’ the Infliximab but even that argument wasn’t convincing, as I am so much better than I have been over the past couple of years. In the end, we agreed to go ahead with the infusion and just keep an eye on things to make sure there was nothing underlying going on, like a bacterial infection.

It isn’t unusual for my blood tests not to match how I feel – I mean, ironically, they were perfect while on Tocilizumab, even though my joints were very obviously not! I’ll have the blood tests repeated in a week or two at my GP surgery, just to see if there are any further changes, but hopefully things should remain stable. We are also going to try an even higher dose of Infliximab next time (I’m currently on 300mg), and my next appointment is booked for four weeks time, meaning that I will get another infusion in before the school term starts and I (hopefully) return to work. It also doesn’t leave as long between seeing my Rheumy, just in case.

I was finally hooked up to the IV Infliximab at about 2.00pm and it went through great. I don’t even get the hot, giddy flushes that I did during the first couple of times.  It took just over two hours for the Infliximab and then half an hour for the Saline flush to go through before I was free to go. I’m always happy enough during my infusion; the individual rooms have a TV, I take something to read and have company too, so can’t really complain. It is a long day but it could be worse.

I left the hospital feeling pretty good – it’s been the first visit off crutches / sticks and the nurses that have known me for a while now were pleased to see so much progress. But at the same time, I am a little bit concerned about these blood test results. There are so many little troublesome things that I tend to push aside and ignore, I just hope that I’m not missing something.

Like I’ve said before, things are never straight forward with Still’s.

L

Ps. Looks like I had similar issues with my bloodwork at the start of my Orencia treatment according to this previous post.

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As well as living with Still’s Disease, over the past couple of years I have also developed a condition called Hidradenitis Suppurativa, due to being on Prednisolone for so many years. Hidradenitis causes swelling, abscesses and leaky channels to the surface of the skin, particularly around lymph and sweat glands (lovely I know). Last August I had a procedure to remove the worst affected area in my left groin, a procedure that took a long time to recover from, since it means leaving an open wound to heal. Eventually though, it did heal and I was just left with a neat scar. The surgeon wanted to do the same procedure on the right side, but it seemed to settle down, plus I became so poorly with the Still’s that it wouldn’t have been possible until now anyway.

But now, I do need it doing. With the reduction of the Prednisolone the right hand side has flared up again and is swollen and sore with some drainage every now and again. Even the left side, below my scar and previous site, is tender.  I think this is what happened last time too – that my HS flares seem to be related to reducing the Prednisolone, although I’m not sure why that would be. So yeah, I should really have it seen too. The difficult thing is that I have been through so much illness this year and am just starting to feel pretty good, with lots of positive things happening in my life, that it is hard to make the phonecall to arrange the surgery and put myself back into the ‘sick’ role 😦 I was really lucky last time; as horrendous as the wound looked, it was never extremely painful and I had minimal infection. This time could be different and could set me back. There are risks as with any surgery.

The other thing is that I want to aim to go back to work in September, so I would prefer to get it done sooner rather than later, as I do not want to have to take time off for something else (did I mention I already need a procedure to take two wisdom teeth out?!) At the same time, I remember the discomfort of having an active HS site when I was last at work – that was not easy either. Plus, if the site becomes infected, it will jeopardise my Infliximab treatment and that’s the last thing I want.

There is so much to consider, so I’m giving myself this weekend to mull it over and if I decide to go ahead with it, I’ll phone on Monday.

What would you do? :\

L

Edit: I just reread the HS information on the above link and strangely, Infliximab is one of the suggested treatments so in theory I shouldn’t even be having this flare of it.

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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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It’s actually been quite a while since my last Physiotherapy appointment; first I was sick then my Physio Jo was, then there was a weekend or two away and my infusion… I’d been keeping up with my exercises – building up the number of repetitions and holds, using my 1lb weights for some and gradually getting stronger and stronger – until eventually I decided the stick was holding me back and that I felt better without it.

Jo knew nothing of this. I was planning on turning up to my appointment today, hobbling on both my sticks, then throwing them down to surprise her. Turns out I didn’t need to wait that long. I actually bumped into her in Marks and Spencer during my first outing in town on Friday and her reaction was just as good, with hugs all round.

So at my appointment today we were at a bit of a loss. No more walking between the parallel bars, what to do?! She assessed my balance whilst walking and said it was very good; I’m still not moving perfectly but these things take time. I told her about the pain I was experiencing in my lower legs and ankles, which at times is accompanied by heat and redness over the area. She checked both feet and ankles over and told me they were a bit tight, but that was only to be expected after so long off my feet, especially when I had been walking quite flat footedly while on crutches. Now that I was bending my foot properly when walking, the ligaments were being stretched out of their new comfort zone, causing the pain.

Again, it is going to take time but the pain should settle down as my ligaments get used to the normal walking motion again. To help, Jo has given me some gentle stretches I can perform whilst sitting – simply wrapping a theraband around the bottom of my foot, holding on to both ends, and pushing my foot down against it. Do the same with someone else holding the band and you can practise pulling the foot up / pushing heel down with some resistance too.

She had a quick look at my hands too, which are very stiff in the morning. I thought this was a new issue, but she thinks that perhaps other pain was so overwhelming in the past that, with it now gone, I’m noticing ‘smaller’ pains that have been there the whole time. Since stiffness is an issue, there is no point splinting the hands at night (which I have had before) because it will just restrict them further. For now, I’ll see how I get on with warm hand soaks before bed and in the morning, alongside some gentle finger and hand exercises to keep each tiny joint mobile. I need to keep an eye on the shape of fingers and especially thumbs though, as they seem to be bending inwards ever so slightly.

For the rest of the appointment we just talked about my progress so far and the future. We decided that I should have a break from the Physio dept, so that I could fill my time with something other than hospitals again. My next appointment will be in September, with some time in the pool too. But I have got some homework in the meantime, (as well as keeping up with my exercises). Jo wants me to learn how to think ahead again and to start making some plans and goals – small things like catching a bus on my own, going shopping with friends, trying an exercise bike and building up to a bike ride next summer, increasing my walking distance, aiming to complete the Cancer Research 5k, finding some ‘active’ hobbies and so on. I’ve always wanted to try Tai-Chi and it seems a gentle start, so I’ve promised to start a local class if I can find one.

Of course there is also walking up the aisle to look forward to now and Jo may even be there to see it – she may be a Rheumatology Physio half the week but for the other half she is photographer extraordinaire…. so who knows, it’d certainly be nice having someone I know and Jo has turned out to be a friend as much as a great physio.

So anyway, even though I won’t be posting much about physio in the next weeks, you can rest assured that I am still working hard at it, because if a flare like this last one ever hits again I want to be ready for it!

L

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I had an appointment with the dental surgeon today, regarding my wisdom teeth, which came through malformed and black. The two on the left have now started to break apart and so my dentist felt that they needed to be removed. They’re not really causing me any pain, but they are providing an infection risk because of my Still’s medication.

The doctor I saw was really lovely. I can put up with doctors poking needles into various joints and performing all sorts of procedures on me… but when it comes to the dentist I’m an anxious wreck! She explained how my bottom tooth was vertically impacted and very close to my jaw bone, so she would have to remove a substantial bit of gum and bone, splitting the tooth root into two before removing it. I had an xray to check the position of the facial nerve; there’s a risk that they can damage this and cause drooping to the lip and numbness of the tongue. I’m hoping the risk is small and she was just covering herself, as I don’t want any more problems. Removing the top tooth, thankfully, appears to be more straight forward.

After telling me about gum splitting and bone cracking, that I would be bruised and swollen for about three weeks, she then asked me whether I would prefer a local or a general anaesthetic… guess what I picked –

General. I’d much rather be blissfully unaware as they torture my mouth thank you very much.

I had my last two teeth out via General Anaesthetic too, so I’m hoping this won’t be a problem. She seemed to think there may be an issue surrounding my Tacchycardia, but I seem to remember them saying it was easier for them to monitor this during a General Anaestheti, where you’re hooked up to monitor… and trust me, if I were awake it would only make my heart rate rocket even more than normal!

So, all the paper work is done, I just have to wait for them to get in touch with a date now. In the meantime, I’ll be trying to book a holiday before its due, so I don’t look hideous on any holiday photos!

L

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I wanted to get back to writing about some topics that are important to us all and work seemed a good place to start, since it is one of the major concerns to people when first diagnosed with Still’s Disease. It’s also something I’m having to seriously think about right now.

I want to start on a positive note by saying that it is definitely possible to work when you have Still’s Disease – a question I get asked a lot by the newly diagnosed. Of course, you first need to find the right treatment plan to control your Still’s and this can take longer for some than others. Every individual case of Still’s is different and people’s ideas of work are different too, so there are a lot of factors at play; but, generally speaking, it is possible. And not only is it possible, it is beneficial too.  Work can provide the Still’s patient with exercise, stimulation, friendship, confidence and a sense of achievement, all of which help to combat elements of depression that often accompany chronic disease.

But that’s not to say it is easy.

When I was younger and people asked me what I wanted to be when I grew up I would answer ‘a vet’ or ‘a doctor’ or ‘a journalist’… all very different but all careers. I was bright and had no doubts that I would one day have a good career, earning a decent wage. Half way through high school though, when I was struck again by illness after a long period of remission, this all changed. I stopped aiming for careers and simply aimed at being well enough to work a job, any job. I still went to university and even gained a first class degree, but I never felt that I would realistically be able to manage the pressures of a career.

I still don’t know whether I was right to give in to Still’s in this way and it’s not something I’m advising either. I know some people would argue that you can overcome disability and shouldn’t let it get in the way of your dreams. Usually I’m one of the first to claim as much, but a big part of me thinks I’m just being realistic in this and allowing myself to work around the Still’s rather than having it knock me back constantly. And here is why:

Studying was easy enough – I could pace myself and work around the bad days; rest when I needed to; struggle through an hour lecture, when feeling ill, knowing that I could catch up on my borrowed ‘spoons’ the next day… But even the most tedious working day is structured and (mostly) unbendable.  If you’re late to work because you really needed that extra half an hour to get on top of your pain, to shake off the stiffness in your joints or simply to catch up on sleep, is your boss really going to be amenable or could you find yourself facing disciplinary action? And when are you going to catch up on all those ‘spoons’ you lost ploughing through the bad days to reach targets and deadlines? There’s a good chance that all those borrowed ‘spoons’ are going to keep piling up until, one day, they come crashing down around you.

Which is exactly what happened to me at the start of this flare.

I was fortunate enough to find a combination of medication that controlled my Still’s symptoms and I took the risk of accepting a fulltime job. It wasn’t a career exactly, but it was a job that I enjoyed and it felt fantastic just to be working. Things started off well and I managed fulltime hours for about two years, but slowly more and more symptoms began to come through and I was spending all my spare time trying to fight the fatigue or sleeping to catch up on all the borrowed energy I was surviving on at work. Soon, even that wasn’t enough, and I kept on deteriorating until I ended up in hospital.

I know that working fulltime wasn’t completely responsible for this two-year flare from hell, but it sure didn’t help and it has made me aware of how much harder it would be working in a high-pressure career. My job was relatively easy and stress-free, the type you could leave behind at the end of the day, unlike most careers. That makes me think I made the right decision to change priorities back then; that I wouldn’t be able to manage a career as such. But knowing something, doesn’t necessarily make it easy to accept and I’m often tempted to change my mind.

Anyway, I am now at the point in my rehabilitation where I can actually consider returning to work at some point in the near future; this time working part-time hours. I had hoped to return to my previous job; I still have a contract with them but, even so, it seems they are reluctant to take me back on, knowing my medical history and having experienced my ‘shortcomings’ first hand. It will go before a board of governors, who will make a final decision in the next couple of months, although I’m not expecting things to go in my favour.

Which got me thinking – would it be better to find some business venture that I can pursue on my own terms rather than searching for employment again? I have so many concerns about working for an employer when I have an ongoing medical condition, now that I have experienced ‘the system’. I’m sure these questions are the same for a lot of people so I’ll make a list (or two):

Returning to a Previous Workplace:

  • Will my employer and/or work colleagues treat me differently? Will they lose the respect they had for me before I was off sick? Will they hold back on giving me certain responsibilities because they worry I will have further prolonged absences in the future or that I cannot cope with them physically? Will I fit in with them on a social level or will I be treated as an outcast?
  • Will my job be at risk? Will there be more chance of me losing my job to funding cuts than others, because I am now seen as disposable or a liability? When it comes to such decisions, most employers would surely choose employees that are healthy and won’t require the additional costs of covering absences of ill health.
  • Will there be resentment towards me?  Will my employer feel trapped into employing me because of legal legislation in the disability act? Will colleagues feel I don’t pull my weight or that I receive special treatment? Will they begrudge me the time I need for hospital treatment and doctors’ appointments?
  • Will I be able to manage my previous working hours and workload and what happens if I can’t?  It is impossible to know what our bodies are capable of after such a prolonged period of illness, until we actually try. Therefore, it is impossible to make promises or commitments, even with a phased return. What happens if I realise something just isn’t going to be possible?
  • Will they provide adequate support? It can often look great on paper but I need to make sure it translates into reality too.
  • Will I still be considered for promotions?  Or again, will I now present too much of a risk to put further trust and responsibility in.

Finding New Employment:

  • Should I tell my new/potential employer about my disability / medical history? I have always been honest about my Still’s Disease in the past, but this is the first time it has gotten in the way of my employment significantly and seeing people’s reactions to it makes me wonder if it would only disadvantage me.
  • How do I explain my previous absences from work to potential employer? Knowing that there is every possibility it could happen again and require them to fund cover and/or sick pay? Surely this is going to put off every employer from employing me and yet it would be wrong to lie? Some people use this factor to whittle down the number of applications, without even looking at the rest of the qualifications, no matter how brilliant!
  • How do I know that I will be able to manage the duties and responsibilities? As above, it is difficult to know what our bodies are capable of and this is bound to be more difficult without a ‘gradual return’ to work, where there is awareness of my medical background (and hopefully some support).
  • How much do I disclose to colleagues about my limitations? On one hand I don’t want people expecting me to do things that I can’t manage, on the other I don’t want to seem incapable. Plus, again, I want to be able to fit in and hopefully make friends.
  • What happens if I do struggle or if I need to take time off work due to ill health?
  • How will I manage the pressure of potential absence that having an illness puts on me? It’s not just the physical side of the illness we have to do deal with, but often the psychological effects too. Knowing that I may struggle, need time off work, etc in the future can be quite stressful in itself.
These are just some of the questions I can think of right now, but I know there must be many more. I’m sure that anyone who has considered employment or has had to have time off work because of their Still’s Disease will recognise a lot of them. They may sound very negative, but in my experience they are realistic issues that we need to think about. Unfortunately, despite Disability and Equality Acts within the workplace, many employers do not want to employ people with complicated medical backgrounds and histories of prolonged absence – we are a financial burden.

Despite this, my gut feeling is that we should be honest with potential employers, at least in the later stages of the employment process (when they have already seen how brilliant we are!). This means that if you do struggle or need time off for appointments or due to a flare, then they can show some sort of willingness to support you. Otherwise, if it did come to a flare of your illness, there may be some resentment that it hadn’t been mentioned in the past, that they weren’t given the chance to support you or simply that they wouldn’t have made the same choices with that knowledge, as wrong as that may be. Plus, surely keeping something like this to yourself is going to fester inside you and just create additional stress that you don’t need? That’s my opinion anyway.

If returning to your previous job after a prolonged absence, it is important to get the right support in making that transition back into the work place – both physically and emotionally. Most employers in the UK are entitled to provide support to employees with a disability and Still’s Disease is covered by the Disability Act here. Help that has been suggested to me by Occupational Health so far has been: Transport to Work through Access to Work; Alterations to my workspace to ensure my desk, chair, computer etc are all positioned correctly and comfortably; Voice recognition software to limit typing time, hands-free phone headsets, relocation to a different role if necessary, workplace assessments to see if any other adaptations could be made to make my working life easier… and so on.

Even more important though, is finding work patterns that fit around your Still’s:

  • Suitable hour – Working part-time is an obvious option, but how are these hours broken down – across two days or in smaller chunks throughout the week; which suits you best?
  • Suitable times of day – Maybe afternoons are easier for you than mornings; this needs to be taken into consideration too.
  • Suitable days – you may not be up to much after taking medications such as Methotrexate early on in the week, but much better later on in the week.
  • Appropriate breaks – Both ‘tea breaks’ within your day at work and time off in between working days, to give your body chance to recover its energy resources.
  • Opportunities to alternate between sitting and standing throughout your working hours if possible, to make sure joints aren’t over-stressed but also that you don’t seize up either.
  • Some people may prefer to leave work behind at the end of the day; others may like the opportunity to be able to pace themselves by being able to take it home with them.
  • Think about traveling to work and distances / effort it takes getting there; are there any options to work from home if necessary?
  • Try and find a job that gives you plenty of chance to rest and pace yourself, with minimal stress; perhaps something you can even enjoy!

It may be that these terms & conditions rule out the high-flying, high-paying careers you dreamt of once, but surely your health is more important? If you think you will struggle financially, see what benefits you are entitled to supplement your wage with.

So, to round things up. You can have Still’s Disease and manage to work and it is beneficial to do so, but you may have to make some changes and sacrifices and it isn’t always going to be easy. You will always have an extra workload from the Still’s itself and that can be quite the pile!

Pace yourself,  keep stress to a minimum and get support from others and you should be okay.

Good luck
L
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Useful Links:
Working With Arthritis (Arthritis Care)

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I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into jeopardy, plus I have to save some goals for the future right? 😉

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

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