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Posts Tagged ‘Juvenile Arthritis’

I was surprised to find six new articles about Still’s Disease in my inbox this morning, thanks to the drug Tocilizumab being approved in the treatment of children with Systemic Juvenile Idiopathic Arthritis.  This drug is being hailed as a wonder drug in the treatment of Still’s (sJIA), with patients so far showing a 90% increase in wellbeing; as these articles state, even children that were previously wheelchair bound have been given a new lease of life.  What I didn’t know, is that Tocilizumab is actually the first drug to be approved to specifially treat sJIA/Still’s.

The first article from the Daily Mirror tells of a young girl with sJIA, who was bullied for being in a wheelchair and was crippled by pain, even with Morphine, but is now leading a ‘normal’ life thanks to Tocilizumab; she talks about how it has literally transformed her life, which is what we all want.

The next article  from the Daily Mail is my particular favourite, since it features my Paediatric RD Eileen Baildam, who played a major part in the drug trials:

“Dr Eileen Baildam, consultant paediatric rheumatologist and triallist at Alder Hey Children’s Hospital, Liverpool, has treated 12 children with the drug and seen them all make a remarkable recovery.  She said ‘These are very sick children, the disease affects every single joint in their bodies as well as heart and lungs. They can die from heart failure and other conditions if they don’t get treated. It’s much worse than rheumatoid arthritis in adults.”

The article goes on to say how two thirds of patients treated with Tocilizumab had a 70% improvement after just three month, with this increasing to a 90% improvement after a year of treatment, with little or no side effects.  The drug costs the same as similar biologic therapies available, but the NHS is currently assessing whether this will prove cost effective in the treatment of children.  Dr Baildam says:

 ‘I hope and expect it will be approved and I think it should be given to children as soon as they are diagnosed to limit the disability caused by this dreadful disease.’

And I would agree with this – surely in offering this drug to children as soon as they are diagnosed will limit the amount of damage the disease causes, mean less hospital admissions, tests and procedures, plus shorten the length of time spent by doctors trying different medications, many of which have serious side effects that could in turn lead to hospital treatment being required.  All these things would suggest that early treatment is absolutely cost effective.

The other articles are all pretty similar but I’ll link to them anyway: The Independant Health News and The Liverpool Daily Post; the sixth one was very basic so I’ll leave that out.

All of this is extremely good news for Still’s patients, whatever their age.

L

Ps. To see why the terms Still’s Disease and sJIA appear to be interchangable in this article, please read my earlier post ‘Confused About Still’s Disease?‘  This interchangability causes much confusion.

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According to the article, the drug known as RoActemra or Tocilizumab has been approved for usage in children over the age of 2, who are suffering from Systemic Juvenile Idiopathic Arthritis, or Still’s Disease, in the EU.

This is very good news, as I have heard nothing but good things about the drug so far. I also have a fellow Still’s buddy who is doing very well on it.  Only recently, I posted about an article on a young girl who had been refused funding for Tocilizumab by her local PCT, one reason being due to her age.

I hope that the news gives this family, and others, another treatent option and, more importantly, some relief.

L

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Following on from yesterday’s retrospective post, I spent the night on the Short Stay Ward with a view to have a CT scan and a couple of other tests today.  Before I carry on, I would like to point out that I have no problem staying in hospital and I’m not one of these people that look for a reason to complain or be awkward.

I’ve mentioned here before that I often struggle in the mornings at the moment, ranging from needing help to sit myself up in bed, to waiting for my painkillers to work before I can function well enough to shower, dress and generally move about better.  This morning was one of those days that I woke up unable to really move thanks to pain and stiffness, not even to lift the blanket away – as a young person, this is difficult to admit and I would certainly never exaggerate or play on it in any way.

The breakfast lady woke me and put a bowl of cereal and a hot drink on the bedside table; I told her that I needed some help to sit up and eat and she said she’d let someone know.  Twenty minutes later, someone else came and took my uneaten breakfast away and placed my tablets on the table instead. Again, I tried to explain that I hadn’t eaten because I needed help to get myself up and would do to take my tablets too, she said she’d let someone know but later came back with a wash bowl and told me to have a wash as ‘it would make me feel better’. I tried to explain that I couldn’t get myself up AGAIN but she just huffed and went away before I had chance to finish.

I was starting to really hurt now, being stuck as I was in the same position.  Then half an hour or so later, two nurses came to change the bed and told me I’d have to get up. I tried to explain again that I would need some help sitting up; their response was to stand and stare then say ‘Just swing your legs round and sit yourself up’. Not very helpful but I kept calm and tried to explain that I couldn’t as I was in a lot of pain. ‘So why haven’t you taken your painkillers then?’ they asked me, quite sharp by this point. I couldn’t believe they had to ask. ‘Well it’s not like we can lift you up, you’re not a baby’. The other one spat.

I was just trying to explain that all I was asking was for a bit of a push/ support on my back to prop me up in a seated position, from which I’d eventually be able to unfurl my locked arms and legs, when the first nurse grabbed me by the (extremely painful) arms and started to drag me to the edge of the bed; because I ended up horizontal across it, the second nurse proceeded to grab my ankles and pull me by them too. I don’t know if they were expecting a miraculous recovery, for me to sit up and say ‘okay I give in, I can actually sit up I just wanted to make a fuss…’ but if it had carried on a few seconds more I’d have ended up on the floor.

Thankfully, at that point, a doctor appeared and asked them what was going on.  I just burst into tears and in all my life, in all the times I’ve spent in hospital, I have never cried. But then I have never been made to feel so humiliated either.  The doctor calmed me down and asked me what the problem was; as soon as I told him he gently gave me the right support to prop me up in bed so that I could take my painkillers and told the nurses that it was actually in my admission notes that I was having some mobility problems and might need some help.

As always, I was moving much better after a couple of hours and had to then listen to the two above nurses discussing how I’d had a ‘miraculous recovery’, at the end of my bed of all places! When I tried to explain to them the reality of living with Still’s Disease and flares, I was met with dirty looks and they promptly walked off, but I had to put up with petty, snide remarks for the remainder of their shift.

You can probably tell that this incident upset me but I’d been told that my CT Scan was booked for 2.45pm and that I could go home if it was clear, so I just kept my head down reading until that time, still thinking it best to get the scan done.  Sure enough, at 2.45pm I was taken down to the scanning room, only for them to tell me that I was supposed to have a green canula fitted to inject the contrast that would show up my blood vessels.  The ward knew this but nobody had even tried. The doctor there did try to insert one, but because of my bad veins she couldn’t manage and so I was sent back to the ward with the promise that someone would insert the canula there and take me back down before it closed at 5pm. Funnily enough, nobody did.

It became obvious to me that I wouldn’t be getting the scan until the next day and I couldn’t bear another morning like this one, so I made the decision to discharge myself against their advice. The ward matron was on duty by that point and wanted to know my reasons and so I told her about my experience.  She did apologise and said she had a friend with Still’s Disease; I hope that at some point she stands up for this friend and myself, by educating the two ignorant nurses in question.

Anyway, I have never been so relieved to be away from a hospital. What I have accounted here is my own main experiences but I also witnessed a lot of other mistakes and mistreatment of patients that I will be including in a formal complaint to the hospital.  Now, my doctors might think me clingy, but this had made me feel even more certain that I don’t want to be treated anywhere else but at my own hospital, with people that know my background; people I trust.

Oh, and I never did get the blood transfusion!

L

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I know, two posts in one day must seem a bit obsessive but I was forwarded this article  and just had to comment about it, since I related to it in more than one way. Plus, it is coming up to the end of July, which has been Juvenile Arthritis awareness month in the US, so it seems a good time to look back on things.

First is the story of Brynn, who has a form of Juvenile Arthritis and talks about having to deal with the fact that she is unable to do a lot of the things she would like to – play volleyball and soccer etc – while she fights through some level of pain because she is determined to participate in other activities that she loves.  Of course I’m reminded how, as a child, I couldn’t continue my dance classes; and then, as teenager, how I had to stop all the things that I loved too – horse riding, athletics, cycling, netball, hockey… I went from being the talented, sporty one that was always on the go, to the one who could only sit on the sidelines and watch, in just a matter of months.

Coming to terms with these limitations is one of the hardest parts of living with this illness; it’s not just a one off occurrence but something you have to deal with every day.  I have never stopped wanting to do those things (and other things that crop up over time), but I have to be realistic without giving up hope that maybe one day it will be possible. In the meantime, I’ve realised how important it is to find things you enjoy and can do, even if only in small bursts.

I scroll down further and see the heading ‘Hurt to Be Touched’ embedded in the article and am drawn to it straight away.  That’s a phrase we used so often during the early days; in fact, the whole description of Ashley Matthews’ experience is identical to how my symptoms presented at 14 – the muscle weakness and tenderness, the pain that even a hug from my parents could cause, having to be carried up and down the stairs, not being able to stand or even roll myself over in bed. I remember the films and photographs that my paediatric rheumatologist took of me trying (and failing) to sit up and pull myself up off the floor…

Then I see the word Dermatomyositis  and it all makes sense because, as I have briefly touched upon in My Story, this was actually my previous diagnosis and it still resonates with me.  Like me, Ashley was first treated with a massive dose of Prednisolone and had to endure cruel taunts as a result of the effects.  I was lucky in that I had nothing but support from children at my own school, but not everyone was understanding – strangers, even adults could be insensitive. I remember my local shop keeper refusing to sell me a Mars Bar because ‘I looked like I’d had too many already’.

So I can really empathise with both girls in the article and know there are many others going through the same.  The main point I want to get to though, relfects back to the title of the article and is the statement that it finishes with – a quote from Ashley Matthews herself – which I think is extremely inspirational. On dealing with her illness, she says:

“Anything that’s thrown my way is a lesson and I learn from it.”
 
This has always been my philosophy too. It is horrible to deal with any illness as a child and to carry it with you into adulthood. I would never say it was easy to live with, quite the opposite… but we can and do learn to cope with what life throws at us and I think we are stronger for it, as both these girls and many others have shown.
 
L

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I know at times I am, and never more so than when I started to look into things more for writing the Still’s Disease section of this blog.   It seems that I’m not the only one either, as a brief exchange between tweeters proved earlier today, prompting me to write this.

The main issue seems to be a confusion around its relationship to other conditions. Questions that arose were:

  • Is Still’s disease the same as JIA?
  • If you are diagnosed with Still’s Disease as a child, does this diagnosis change to RA in adulthood?
  • Is there a difference between Still’s Disease in adults and children?

I can try and answer, but as always I am using only my own knowledge / resources and obviously, I’m not a doctor.

Still’s Disease seems to be interchangeable with the term Systemic Juvenile Idiopathic Arthritis and it’s true that it was first described in children.  However, it is not simply a juvenile form of RA, the systemic features can often be more apparent than the joint issues. I know this is often the case for me – Mainly, I have fevers that peak at various times of the day, a rash that thankfully comes and goes (I’ve posted a couple of pictures here), enlarged glands, enlarged spleen and liver, tachycardia, the dreaded sore throat and swallowing problems, episodes of Pericarditis and then the funky bloodwork. I’ve also experienced degrees of Liver and Kidney damage in the past, although thankfully it has all been reversible. 

These things usually appear first in each flare-up and then the joint issues follow alongside, often quite acutely, but not everyone is the same.  There have been times when I’ve had to be admitted into hospital purely for the systemic symptoms, without any obvious joint involvement; on the other hand, I had surgery on my right shoulder when I was otherwise well.

So if a child presents with such striking systemic symptoms alongside joint pain and swelling, they are likely to be given a diagnosis of Still’s Disease or Systemic Juvenile Idiopathic Arthritis.  If an adult were to present with these symptoms, they would receive a diagnosis of Adult-Onset Still’s Disease; this is where the term sJIA becomes redundant (Adult-Onset Systemic Juvenile Idiopathic Athritis anyone?) and why I think we should stick to the term Still’s Disease. 

Similarly, a child with Still’s Disease can grow into an adult with Still’s Disease, with the symptoms remaining the same.  Perhaps for some, the systemic symptoms subside and their diagnosis is changed to Rheumatoid Arthritis, but in my own experience the diagnosis has stuck.  My Rheumatologist also makes a distinction between Still’s Disease and Rheumatoid Arthritis and their similar, but separate, treatment. For example, Anakinra is a drug no longer prescribed for RA but has proven to be particularly successful in the treatment of Still’s Disease, and, when recently discussing the success rate of my current treatment Orencia (73% improvement for people with RA), I was reminded that this did not apply to me directly as a Still’s patient. 

Although part of the same family of disease and sharing many symptoms, the two are separate – the best way I can describe it is similar to the difference between Lupus and RA.  Unfortunately (for us at least), Still’s Disease is not widely known like Lupus and even people who recognise terms such as JIA, RA, sJRA and so forth, may not understand the distinction and/or similarities between those and Still’s Disease.  This makes it very hard to try and get information and support as someone who is newly diagnosed, and for the rest of us to try and raise a bit of awareness.

Perhaps we need to stop the interchangeable name and stick to one recognisable term to clarify things and reduce confusion?

L

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I thought this was worth mentioning here since Still’s Disease was originally thought to be a form of Juvenile Arthritis – I know that I was affected as a child and that things may have been different if there hadn’t been such denial surrounding children and arthritis.

I was also alerted to this inspirational story about Kristy McPherson, an American golfer who has had much success despite being diagnosed with Still’s Disease as a child.

So spread the word, Children can get Arthritis too.

L

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