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Posts Tagged ‘Miracle Cure’

Thanks to the cortisone injection in my knee on Thursday, the inflammation is settling down. I can bend it more and am no longer hobbling along like a penguin (or at least less so, I haven’t had chance to test myself out of the house yet).  I’m also getting better at stairs, although I’m still slow because of my sore hip, but maybe that will settle down soon too.

Thus continues my love-hate relationship with steroids.

But for now,  I’m 🙂

L

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I thought I’d post this article, as it sounds like promising research to me. Scientists claim to have found a protein that stops immune cells from going on a ‘rampage’ and destroying healthy joint & cartilage tissue.  Apparently, it is a lack of this protein that may cause the symptoms of Rheumatoid Arthritis.

When the scientist injected a form of this protein into an animal with RA presentation, its symptoms disappeared, so it looks like another type of treatment could be on the way in years to come.

Who knows, maybe one day they will finally find a universal treatment that helps every single case, rather than relying on the trial and error method of gaining control over the disease.

L

 

Edit: A similar article on the same subject can be found here.

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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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Today marks the start of round two in my current treatment plan: Tonight I need to take my second dose of Methotrexate (just as the nausea was subsiding) and then tomorrow afternoon I am off to the hospital for my second Orencia infusion. 

The Methotrexate has surprised me a little; I wasn’t expecting to feel so sick on such a small dose and then there was the bone pain that came out of nowhere – I can see myself becoming part of the club that dreads that day of every week.  I also can’t help thinking that I was better off without it but, then again, it is early days so I need to give things a chance to see how they pan out.  If I see my consultant tomorrow I will mentioned the side effects I experienced – maybe there is something I can take to help with the nausea etc…

He never said whether he would be popping by to see me during my infusion tomorrow, but I haven’t spoken to him since the first one and I would think he’d be interested in seeing how things went.  He’ll probably think I’m crazy when I tell him I felt a big improvement straight away – or maybe he’ll just be encouraged that this is the right drug for me.  I feel excited in a way, because if I notice such a difference this time then it means it must be the Orencia helping.  But what if it doesn’t? Am I going to feel disheartened?

I’m a bit concerned about the vein situation, since the drip struggled to go through my ‘best’ vein last time and I don’t have a whole lot of options – they have suffered from the monthly IV Ig and other IVs over the years.  I’ll just have to drink lots of water in the morning and hope for a miracle.

Wish me luck

L

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I wanted to post this article  since this young girl seems to have some sort of Juvenile Arthritis that could be connected to Still’s Disease – plus she is pretty local to me too; in fact Alder Hey Children’s Hospital is where I got my very first diagnosis at age 3.  She has responded very well to Tocilizumab and isn’t the first, from what little I know of the drug, which is always good to hear!

L

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Well, after all that worrying about how I was going to physically manage my friend’s three day wedding event, things turned out pretty well and I had a fantastic time!  I practically bounced out of bed each morning and felt much like my old self; in fact, I didn’t struggle at all.  I had expected that, after such a long day with so much standing etc, I would have to excuse myself from the evening reception quite early… but no, I was still there at midnight and even managed a dance or two. Unbelievable!

I don’t want to be too hasty in claiming that the Orencia infusion has worked a miracle; friends have suggested I may be running on adrenaline or even some sort of placebo effect and they may be right.  BUT… I am feeling stronger in myself, as if some sort of energy / essence that had been lost, has returned.  The joints are still stiff, some are swollen but there is less pain and I’ve always said that the fatigue is the hardest thing to deal with, so to me there is a noticeable difference and I do believe that I felt it straight away.

First there was the warm, tipsy, glow I felt after the infusion and the sensation that I could clench my hands again and feel some strength in them, while we were driving home.  Then, when I was trying to drift off to sleep, I felt what I can only describe as lots of little fireworks in my bloodstream – as if I could feel the stuff circulating in my veins.  Perhaps I have an over active imagination but that’s exactly what I felt. 

When my alarm went off at 8.00am the next day, I felt ready to take on the world; there was no slow rolling over and unfolding myself painfully out of bed, testing out my wobbly legs and struggling to heave myself up. I didn’t need to wait for my painkillers to kick in before taking a shower, dressing and managing the stairs.  Instead, I did those things the way most people take for granted – without even thinking – and even decided that I would NOT increase my dose of Prednisolone to 40mg after all, I felt so good that I was sure I wouldn’t need it.

And I didn’t need it.  And even now, when it’s all over and everything should have hit me / caught up with me, I am still feeling pretty good!  I don’t really know what to think… is it too early to call this a miracle drug? Obviously, I don’t want to get my hopes up to much but – 😀

Whatever it’s down to, I hope it lasts!

L

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