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Posts Tagged ‘PCT’

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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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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I phoned my Rheumatologist’s secretary earlier to let them know that I was going downhill a bit and having all this inflammation in my left arm – the elbow is still locked and won’t bend or straighten, shoulder won’t budge, wrist is burning and my fingers look like little sausages that I have to stretch open myself if I keep my hand too still.  In a way I’m glad it’s localised to this one limb right now at least, although the pain is getting worse, to the point that I see stars if I try to face my palm up ( I know… so don’t even try?!)

Anyway, the good news!  She told me that the funding for the Abatacept has finally been approved so now all I need is to wait for a letter from the ward with a date to start. Hopefully, I’ll be able to fit in two infusions before my friend’s wedding on July 2nd and (if it works, fingers crossed it will!) be well enough to enjoy it without constantly pacing myself as much as I am right now.

I also spoke to my Rheumy about the above problems and he suggested I increase the dreaded Prednisolone to 15mg and if that didn’t help over the weekend he would fit me in his clinic on Monday or Wednesday. I feel lucky that I have such a good Rheumy; he’s always quick to respond and never leaves me hanging like I know some do. In fact the whole  team of people that look after me there are great, which is why I’m happy to travel so far to see them.

Back to waiting I guess but at least this time I know that there is a light at the end of the tunnel 🙂

L

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The question dreaded by most people living with illness on a daily basis.

Should we just smile and say ‘I’m fine thank you’?  Do we go ahead and tell the truth and, if so, how much information do we share, is there such thing as too much information?

For a long time I practised the former; I put on a brave face and tried to make out that everything was fine. I didn’t talk much about my illness or experiences to anyone; in a way I was living two separate lives.  Perhaps at that point I still had hopes of recovering fully and carrying on where I had left off; all I know for certain is that the longer I tried to keep it up, the harder it became until I finally began to open up to people and accept Still’s Disease and all that comes with it, as part of my life.  Now when people ask how I am, I try to tell it as it is, albeit in various shades of the truth – obviously my doctors and those who are closest to me need to know when I’m feeling downright rotten or they might start wondering just why am I still in my pyjamas at noon/not up to cooking a meal from scratch/ready to bite someone’s head off.  It also means that they can try and help me as much as they can, help that is often much needed.  For others that I see from time to time I limit it to letting them know I’m having a good day/week/month or not. I think my favourite response is ‘not too good at the moment but I’m hopeful that will change soon’.   I know that some people are a little taken aback when they hear something other than the standard reply of ‘fine thank you’, but so what?  They asked the question, if they can’t handle the answer well that’s their problem.

So just how am I feeling today?

Honestly?

I feel rotten!

This is pretty much the norm at the moment.  I have been off work sick since January, when I was admitted into hospital, and since then I have been waiting for a new treatment regime that should hopefully include a drug called Abatacept or Orencia.  This has to be applied for and apparently my local PCT are dragging their feet over any funding decisions right now; my consultant expected to have heard back weeks ago, his registrar promised it would be last week at the latest but I’m still here, waiting and feeling a little bit worse every day.  Today, for instance, the joints in my left arm have gone from feeling a bit sore and tender to me barely being able to move them – shoulder, elbow, wrist and fingers.  In fact, my elbow is locked at a 120 degree angle and won’t straighten.  Strangely enough, this makes it easier for some people to understand that I am actually ill, since they can see an actual physical problem.  I just hope that news of this treatment comes before it is more than obvious.

L

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