Posts Tagged ‘Medical research’

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.



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

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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.


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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.


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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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 🙂


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)

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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…


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I was only talking about this the other day – can the foods we eat affect disease activity / pain levels?  This article  claims that up to a point it can and, although it is quite vague, there may be one or two pointers you can pick up. Could help us understand more about the rollercoaster nature of this disease.


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I’m not sure how many people with Still’s Disease are treated with Orencia (Abatacept) compared to other available drugs but since this is next in line for me I’ve requested alerts to any articles that may be relevant. 

This news, received yesterday, seems promising for those who do take it, as a new injectable version of the drug could soon be approved.  Currently, you need to receive Orencia via monthly infusion at the hospital or a more local health centre if one is available.  For the majority of people, I would guess that this is a small price to pay for being well, but there will be some who find the trip impractical and would much prefer access to it within their own homes.  Of course, the other bonus is that it frees up space and money taken up by treating patients in hospital on such a regular basis, rather than the more distant support you receive while taking home injectables such as Enbrel and Anakinra.

It would probably mean the waiting time to start would be less too, which would have suited me fine!


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I had a nice surprise today when my ‘Bridezilla’ friend dropped by to see how I was on her way back down to London.  It was nice to see her and talk about her wedding next month as it gave me chance to focus on the things I’m excited about rather than worrying I won’t be able to enjoy it.  I was hoping to get two Orencia infusions in before the actual day but that is looking less likely as time goes on, perhaps even one will bring me some improvement though… I’ve got to stay positive.

The other good thing about seeing this particular friend is that she is involved in medical research, although her current field is Osteoarthritis rather than Rheumatoid (I’ll sway her eventually I’m sure).  Still, she is able to get me information that I can’t access myself and has promised to look into any studies with Orencia and Still’s Disease.  All the information I have at the moment relates to its effectiveness in treating Rheumatoid Arthritis, which seemed pretty promising with 73% of people showing signs of benefiting from the drug.  Of course, as my rheumy pointed out (dashing my enthusiasm slightly), us Still’s patients are a slightly different kettle of fish so these figures do not directly apply to us.

I felt a bit silly for getting carrying away and forgetting this important factor but he reassured me that he was still very optimistic about Orencia for me, as its mechanism is similar to the Cyclosporin that was a successful part of my treatment for almost nine years and also the Ig therapy I had in my teens, although I’m not sure just how effective that was.  He also said that usually you can see some improvement after the second infusion or within the first month, so there’s still hope that I could feel better for the wedding yet.  Here’s hoping.


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