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Archive for August, 2011

Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?

L

Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

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I started this blog at the beginning of June this year, with lots to say but not really sure if anybody would be interested in reading it.  I knew there were plenty of people out there with Still’s Disease, but finding them was a different matter – we tend to blend in with the RA crowd, or there is confusion regarding the interchangable term Systemic JIA.  Then slowly, but surely, more and more people found their way here, through links, facebook and search engines… and today we reached 1000 hits.

The Top Ten Posts so far have been:

  1. Home Page
  2. My Story
  3. A Slightly Better Day
  4. Still’s Disease
  5. Confused About Still’s Disease?
  6. Articles Section
  7. First Orencia / Abatacept Infusion
  8. Round Two
  9. Poor Veins For IVs Blood Tests
  10. Two Cortisone Shots Later

I hope that the information I post has been useful to some people; it is difficult to find info that corresponds directly to Still’s Disease rather than RA, but it is out there and I’ll keep on posting what I find.  My intention was always to use this blog as a stepping stone to creating a UK Still’s Disease website and I’m hoping to soon make that a reality, so watch this space.

Thank you for reading,

L

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This article outlines results from some recent studies into this question, which must be on the mind of many of us. It covers each of the non anti-TNF drugs individually, but the risk of cancer in each does not seem significantly greater than for people not treated with Biologics.  Of course, because these drugs are still relatively new, long-term effects have yet to be established and continued research is required. Still, it’s a promising start.

Edit: For some reason the above link doesn’t work for everyone, so I copied the article here.

Ps. The Guides for Diclofenac and Indometacin are now accessible from the Treatments tab.

L

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Not much to report on the personal front, apart from the fact that the hospital called me to postpone my Surgery until Friday 26th August.  I’m not sure if this is a good idea or not, since I want to heal in plenty of time for New York, plus I also have reservations about it being the day after my Orencia infusion.  I’d ring my consultant for advice but he is still on holiday, so I’ll have to see what the GP says. I also need to see what I do about the antibiotics too, since I will finish them over a week before the operation date now.

I finally decided to start working on the ‘Treatment’ section of the blog today. I hope to eventually cover all of the treatment options for Still’s Disease, with personal accounts of those that I have had experience with; I’d also invite anyone reading to share their own experiences of each drug in their individual comments section.

The first treatment I’ve put up is Naproxen, because that is often the first drug doctors prescribe when there are signs of joint pain and inflammation. Please let me know if you think I’ve missed anything out and keep watching for further treatments – I’ll try and post each time I update them.

Now I’m off to put my feet up and watch Season of the Witch on dvd; pyjamas at the ready!

  L

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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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As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.

This could be down to the Orencia and Methotrexate combination I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th.  I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit.  I was confused  but decided to listen to my body and take every day for what it was; time would tell in the end.

I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still having active disease and joint involvement.  Perhaps this is the case for me, or maybe it just takes little longer to dampen down the inflammation?  But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:

Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off.  The most recent increase to 20mg was just under two weeks ago and I’m still currently taking it, grateful for some relief.  We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least). 

But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers?  I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the frustration of having to do it all over again with another drug.

I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even want to think how bad I’d feel without them!  I just wish there was an easier way.  It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost.  Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden.  There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.

This doesnt mean I have given up on the Orencia working for me.  I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet.  I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good. If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.

It’s a battle of wills, but we must keep fighting.

L

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Just a mini post.

I’ve had a couple of good days this week; not sure what I owe them to but hey, I’m not complaining.  Today I went on a bus into town for the first time in… well a long time!  I went with my boyfriend’s grandma and she moves at my pace so that was reassuring.  We had a wander round the little shops and then stopped for some lunch and a warm drink before heading back, but I was out of the house for about three hours and it felt good!

I’m tired now, but worth it tired.  Although, I think I did have a mix up with my painkillers – we were out when I was due a dose and I missed it and couldn’t remember whether I took it when I got back (brain fog), so just taking my next one before bed.  This means I could have missed a dose, or maybe two…oops. I’ll have to try and take one during the night because the other day when I missed a dose it took it’s toll the next day.

I’ve now got my pyjamas on, my feet up, with a lovely cup of Horlicks, watching a cute kids’ film called Marmaduke (a must see for any dog lover!), then it’s an early night for me.

All in all a good day; maybe things are on the up 🙂

L

Ps. I’m also blaming Mtx ‘Brain Fog’ for the fact that I poured water from the kettle over my cereal this morning, instead of into my teacup… :\

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