Feeds:
Posts
Comments

Archive for the ‘Articles and Research’ Category

You’ll be pleased to know that I am pretty much caught up with my hospital adventures and so can focus on other blogging needs that have been neglected of late. The first of these is to trawl through all the Still’s Disease articles I’ve been sent since my stay, in order to update the Articles Section, as I know these are popular with many readers. I’ll start with February; happy reading:

New Hope For Children Suffering Rare Illness – Health Canada approves Actemra / Tocilizumab for the treatment of Systemic Juvenile Idiopathic Arthritis.

Jab That Ends The Agony of Rare Childhood Arthritis – New NHS treatment brings relief to nine out of ten young patients (Daily Mail).

New Drug to Treat Childhood Arthritis Approved – Four-year-old Evie Harnes was treated with Tocilizumab, which has allowed her to return to normal life (Includes video). You can also read about Evie’s new lease of life in this article.

NHS Given Go Ahead to Prescribe New Drug to Ease Pain of Rare Rheumatoid Arthritis – Another Tocilizumab Article From the Daily Mail.

NICE Recommends Earlier Use of RoActemra –  It is vital that patients have effective options available as soon as one treatment approach fails.

Better Care For Systemic Idiopathic Juvenile Arthritis – Standardizing Care Could Help Patients and Future Research.

Actemra (Tocilizumab) Shows Superiority Over Adalimumab – A similar article can be found here also.

Anakinra (Kineret) Turns Young Sportsman’s Life Around After Rare Arthritis Hits – Baseball star was told he’d never play sports again after being diagnosed with Still’s Disease.

Riding Along With Ellen Price – A Cyclist With Adult Onset Still’s Disease (AOSD) Shares Her Story.

These will all be added to the Articles Section too, to be accessed easily in the future. Tocilizumab / Actemra is featured heavily in Still’s news right now, so it is nice to see Kineret / Anakinra get a mention too. Especially as this drug is currently in the lead in our Top Biologic Treatment Poll right now!

I also wanted to post this video; it isn’t recent but it was posted on the Still’s Disease Cure Facebook Page the other day and I thought it would be interesting for those who haven’t seen it before. It isn’t often that Still’s Disease appears in the media! It is an interview with Jill Zarin, who stars in The Real Desperate Housewives of New York County, and whose son Jonathan suffers from Still’s Disease.

L

Advertisements

Read Full Post »

I have been updating the Articles page with recent stories featuring Still’s Disease worldwide; a lot of them are Tocilizumab / RoActemra based, but this isn’t a personal bias, it just happens to be in the news a lot right now and is fast becoming the new ‘wonder drug’.

Here are some of the other articles that stood out:

Canadian Woman Honoured For Career Helping Disabled Persons. – Traci Walters has spent her career helping disabled people through the Independant Living scheme; she herself, has lived with Still’s Disease since the age of 12 and I found one of her statements, that we should be promoting ‘disability pride’ quite touching.

FDA Accepts Application For New Pfizer Arthritis Drug – I’m posting this as I know myself and others are interested in any prospective treatments for Still’s Disease and this could be one. Tofacitinib is an ORAL biologic drug, inhibiting the Janus Kinase Enzyme (JAK). Although research surrounds treatment of RA, it is worth keeping an eye on.

Another drug, MOR13, is in the early stages of clinical trials for treatment of inflammatory disease, as is CCX354, the future development of which will be funded by GlaxoSmithKline.

For those of you taking Methotrexate, it may be useful to know that a Dr from Manchester feels that Ondansetron Quells Methotrexate Nausea

Norfolk’s Reverend Pat is Mother to the Untouchables – Read Pat’s story about her determination to make a difference to the lives of people in India, despite having to deal with numerous Still’s Disease flares throughout her life.

Finally, I also found an extract that discusses a series of books, whose central character is a man with Still’s Disease :

‘ In Cedilla (Faber), Adam Mars-Jones continued the odyssey of John Cromer, a young man confined to a wheelchair with Still’s disease. I’m already looking forward to the next instalment: I know of nothing else quite like this in current literary fiction’.

The first book is called Pilcrow and received rave reviews; I’m going to see if I can download them both on my Kindle and, if so, may review them myself shortly!

That’s all for now, I’m off to work on the Treatments section.

L

Read Full Post »

It was nice to see a few of articles addressing Still’s Disease these past two days; I’ll post links to them here but, as always, they can be found in the Articles section too.

The first article  addresses the news that the safety and efficacy of Tocilizumab has been found to be sustained at the two year mark, meaning that improvements seen in the initial trials were still felt by the patient after two years.

The second article is the story of a young Australian girl with Still’s Disease, who has found some relief with Tocilizumab.  The drug was only approved for use in children this month in Australia; they can now access the drug on compassionate grounds, but adults are still waiting for the drug to qualify for subsidy and can only access it privately.

Lastly, is an article about a young woman with Still’s Disease, who has also been given a new lease of life thanks to Tocilizumab.

Certainly seems to be the drug of choice right now.

L

 

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

After posting yesterday  about my ongoing problem with Hidradenitis and Pilonidal Sinus, I thought it might be worth discussing the relationship between Still’s Disease, it’s treatments and infection, because I’m sure it is something we all worry about at one time or another.

Early on in my diagnosis, I remember a GP assuring me that, due to the overactive nature of the immune system in autoimmune diseases, I would be less likely to suffer from every day bugs such as the common cold – the logic being that my body would fight those off along with everything else. It is true that I’ve never had a major problems with coughs, colds and the like, but I’ve always wondered how much truth there was in this suggestion.  Every other doctor I have come across since has suggested that I am more at risk of infection, but is this purely due to all the immuno-suppressant medications I take, or is the Still’s itself a factor?

Trawling through the internet I couldn’t find any article that specifically addressed the relationship between Still’s Disease and an increased/decreased risk of infection -but the general consesus of what I did read seemed to be that Still’s Disease in itself did not increase susceptability to infection. It seems likely then that it is our medications to blame for any increased risk; but unfortnately, the more severe the disease activity, the stronger these drugs are and the greater the risk of infection.

One particular study  I found, on the relationship between RA and infection, claimed that even with immuno-suppressant DMARDs, there was only a sight increase in risk of infection and this was mainly found in patients taking Methotrexate or Cyclosporin.  Only Corticosteroids such as Prednisolone presented evidence of a substantial risk, with the level of this risk related to the dose.  As for the newer, Biologic treatments, it is still early days and more research is needed, but there does seem to be some concern surrounding them:

“…most doctors feel that the TNF blockers are more likely to cause serious infections when compared to patients who are not on these medications.”

This may seem like a mixture of findings but the conclusion is that we still have to be extra careful; why?

  1. The majority of patients being treated for Still’s Disease will be taking at least one immuno-suppressant drug, maybe more; these include Corticosteroids, DMARDs and Biological Therapy. In dampening down the immune system these drugs also lower your resistance to infection, meaning your body is at greater risk of being overwhelmed by any infection you do pick up.  This is why a common cold or flu virus can quickly develop into Pneumonia.
  2. As I have discovered, prolonged use of these medications can also lead to chronic infections, such as skin infections, sinus infections and upper respiratory tract infections… which are plain stubborn to treat.
  3. If you were to develop a serious infection, you may have to stop taking these medications to allow your body to recover more efficiently, which leaves you at risk of a major flare in Still’s symptoms.
  4. Many people with Still’s Disease will agree that catching an infection in itself can lead to an increase in Still’s symptoms.  A common cold no longer feels so ‘common’ when accompanied by fevers, rash and joint pain.  In some cases this is only short-lived but, for others, it can be a major setback.

So, what can we do to protect outselves from this increased risk of infection? Of course, the easiest thing to suggest is to stay away from people that you know are sick, but this isn’t always possible – trains, buses, shops and restaurants are full of strangers unwittingly sharing their germs with us.  I only have to watch a film at the cinema and I’m plagued with swollen glands and sore throat for the next couple of days.  But there are some things we can do to improve our chances:

  • Stay uptodate with vaccinations – make sure you get your annual flu jab, the pneumococcol booster when necessary and any others that are deemed important at the time – eg. Meningitis, Swine flu..
  • If you do develop an infection, get it treated by a doctor as soon as possible.
  • Before surgical procedures, you may need to stop certain medications temporarily and /or take a course of antibiotics beforehand.
  • Make sure any open infection – wounds, abscesses etc are covered and always wash your hands after handling dressings.
  • Keep your hands clean, especially in public places.  Try and carry a small bottle of hand sanitizer with you and use after touching things like bus poles, money, tables and other people (discreetly in this case!).
  • Don’t use air hand-driers in public toilets as apparently these just blow germs floating around from the toilets straight on to your hands; use tissue or paper towels instead.
  • Don’t share foods, drinks or cutlery with others.
  • Boost your immunity by eating a diet full of fresh fruit and vegetables, taking gentle exercise and with certain supplements.
  • Keep your maintainence dose of steroids as low as possible – easier said than done sometimes.

Here’s to keeping happy, healthy and infection free 🙂

L

Further reading:

Is infection a side effect of Dmards and Biologic Drugs?

Infection Risk with Biologic Drugs

Rates of Serious Infection in Patients Receiving Anti-TNF Therapy

Immunisation For Rheumatoid Arthritis Patients (NRAS)

Infections, Drugs and Rheumatoid Arthritis (JRheum)

Read Full Post »

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

Read Full Post »

Older Posts »