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Posts Tagged ‘Medical Opinion’

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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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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It saddens me that for once Google has alerted me to a ‘Still’s Disease’ article and it has to be something like this.  Georgiana, age 4, has Still’s Disease and has recently had her funding application to start Tocilizumab turned down by the PCT after a two month wait.

From the information given in the article, she has tried one other medication that didn’t work and the PCT are arguing she should try others before moving on to Tocilizumab, which is one of the newest treatments available and has a good record at treating Still’s Disease successfully.  I can see the point in trying other drugs first; as I tried to show in my Treatment section, Rheumatologists have a certain pattern they follow when prescribing drugs to try.  On the other hand, it would seem cruel to try Georgiana on drugs like Methotrexate and the other highly toxic DMARDs usually turned to first, when their side effects could also be damaging to her health.  But there are a whole host of Biologic options to try these days.

One of the best things about the Biologic drugs (which aren’t completely without serious side effects) is that they are tolerated well and have a good success rate at keeping disease progression under control – so I feel for children especially, we should be starting them right away, before any further damage is done by both the disease and other medications.  Georgiana currently seems to be taking only a high dose of steroids and her mother is already concerned about the longterm side effects after just months. Treating her properly now could save her from becoming someone like me, who has been on them for 14 years and will probably need treatment for the effects of that on my body too, in years to come.

I do wonder what the drug is that the PCT want Georgiana to try instead.  How someone can say it is ‘unlikely to work’ and will ‘waste another 8 weeks with uneccessary treatment’ is confusing to me though.  I don’t think anybody can be sure what drugs are going to work for any one person – Cyclosporin proved a wonder drug for me, for example, and I barely hear of anyone being prescribed that these days; maybe it just doesn’t work for many, but I’m glad we at least tried – it gave me almost ten years of normality.  No treatment is a waste of time, although it is understandable that some may feel that way.

What the main complaint seems to be about here is the frustrating way we have to go about treating Still’s Disease and similar conditions – it’s a game of trial and error and unfortunately that means a lot of ‘wasted’ time and waiting, which must seem a helluva lot longer to a 4 year old and parents that just want to see her well.  You have to try different drugs and it can take months before it becomes clear whether they are working or not; before you might have to move on to another and start the process over again. There isn’t any one drug that a rheumatologist can prescribe, confident that it will absolutely, definitely work. I’ve been doing the trial and error thing for over 18months this time round, I waited almost 6 months for my funding and there is still no guarentee, even with a drug like Orencia – just as there is no guarantee that Tocilizumab is the drug for Georgiana.

But what I do agree with is that if her rheumatologist thinks Tocilizumab is her best option, (and he wouldn’t have applied for funding otherwise),  then she should at least be given the funding to try.  Because, by cutting out trying other more old-fashioned drugs with all their risks, hopefully you will be able to fast track children to the road to recovery at a lesser cost to NHS.

I do hope they fight the PCT’s decision and that they get access to the Tocilizumab quickly.  But I also hope that if they are unsuccesful, or it looked like it would take time,  that they won’t completely dismiss other treatments thinking that this is the only one for her (I know how easy it is to be set your heart on one, Anakinra anybody?). Most of all, I hope they do find the drug that will turn little Georgiana’s life around, to give her the childhood she deserves and soon.

L

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Since my google alert for “still’s disease” hasn’t been throwing much my way, I thought I’d widen the criteria to include Systemic Juvenile RA to see if that was more productive, since there is a crossover between the two.  This is all a learning curve for techno-shy me, but it proved to be a good move as I think this article is pretty interesting:

Monitoring Serum IL-18 Levels is Useful for Treatment of a Patient with Systemic Juvenile Idiopathic Arthritis (sJIA) Complicated by Macrophage Activation Syndrome.

Macrophage Activation Syndrome  is a complication of Still’s Disease – something I never knew until reading this.

IL-18 is expressed in activated macrophages, so it makes sense that monitoring levels is useful.  However, it states that it is also useful in monitoring the activity of disease itself and I wonder if it could be the basis of an IL receptor like Anakinra or Tocilizumab in the future. (I’m not a scientist so these are just my idle ponderings).

Lastly, I noticed that the patient was treated with Cyclosporin – a drug that gave me relief for many years but that doesn’t seem to be prescribed very often; I wonder why?

Maybe we’ll see more on the article front from now on…

L

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Home from my Rheumy visit and feeling a bit tender; ended up needing my shoulder injected too as there was quite a bit of fluid there.  Steroids always seem to do the trick for me and it usually only takes a few days for things to settle down after having a joint injected so I’m confident I will see some improvement soon.  If only there weren’t so many side effects, treatment would really be that simple. 

I was prompted to discuss this with my rheumy earlier, when a certain conversation got me thinking about the pros and cons of steroid therapy as it stands.  I hate the stuff, but I have to say it works when I need it to and when things get tough, a temporary increase is usually the first thing we try to settle things down.  I have been on various doses over the past fifteen years and that is with just one break, which happens to coincide with my most serious flare up. When I am well I tend to hover around the 2.5mg – 5mg dose and the highest I’ve been on is 80mg when I was very first diagnosed; the rest of the time I’m somewhere in between. 

I hadn’t been overly concerned about this until recently, taking the view that it was important to feel as well as possible and to reduce symptoms and any possible joint damage.  Then I happened to see my consultant’s registrar in clinic and he said that one day I/we would regret all the steroids I have had to have over the years in various forms (Oral, IV, Joint Injections).  Of course this worried me; I have already experienced a lot of effects already, including an increased susceptibility to infection, and persistant tachycardia. Then there are things like heartburn, stretchmarks (ugh) and weight gain (double ugh), which aren’t pleasant but are bearable in comparison to the pain of a flare or joint damage.

The most worrying ones for me are those that are possible in the future, such as adrenal failure, Glaucoma, Diabetes and Osteoporosis.  I know that my bone density is already below the normal range and I am at risk of developing diabetes anyway since it runs it my family.  As for adrenal failure, the possibility of this was already mentioned when I last tried to wean myself off Prednisolone altogether four or five years ago; I could never get past the 2.5mg mark without showing some signs of this.  Perhaps it’s about time that I do start to think about how these and other possible contraindications could effect me in the long-run. 

I guess what surprised me was that two rheumatology practitioners, working together, could have such different opinions on my treatment with steroids: The consultant, who increased my Prednisolone dose and gave me two cortisone shots to ease the flare and the registrar, who was extremely reluctant and in fact wanted me to reduce the dose, despite the flare.  I know one has more experience than the other and perhaps that is the best factor to base a decision on… but how do you know for sure which approach is right?

On top of weighing the risks with the benefits it also becomes a matter of weighing the present with the future; we are always being told to live for the moment and of course we all want to feel as well as possible now.  And is it really worth putting present health on hold to protect the health of a future, in which anything could happen – for better or for worse?

Perhaps it’s simply trying to find a balance between the two? Weighing the risks and benefits of all sorts of things becomes part of life with Still’s Disease after all.

Food for thought.

L

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