Welcome to Taking Charge of Still’s Disease
Welcome to the Taking Charge of Still’s Disease website.
This website has been designed as a resource for everyone suffering from Still’s Disease. You can start by learning about Still’s Disease by clicking here.
Make sure that you join the support list, too. Once you join, you’ll receive periodic support, recommendations and product reviews delivered to your email inbox.
We also have an active and very support community to help you with any questions that you may have about living with Still’s Disease. You can visit the community forum here.
Please feel free to contact us.
Five Reasons Why Methotrexate Isn’t As Bad As You Think
Saying that my heart sank when my rheumatologist gave me a prescription for Methotrexate doesn’t do the experience justice. My heart didn’t just drop; it fell out of my arse and lay beating right there on the doctor’s floor.
I’m no medical student, but I recognised the drug name as soon as I saw it. Methotrexate only meant one thing to me: Chemotherapy.
Cancer Drug.
As soon as I made the link, I went straight to that old maxim: As Serious As Cancer. Ergo, my mind automatically jumped to a new maxim: As Serious As Methotrexate.
But is Methotrexate really that bad? Well, here’s five reasons why Methotrexate isn’t nearly as bad as you might think.
Why are there so many different treatment options for Still’s Disease?
If you have diabetes, your doctor gives you insulin. And if you have asthma, you are prescibed ventolin. Easy, right?
But why are there so many different types of medications that are used to treat Still’s Disease? Why isn’t everybody just on, say, Methotrexate or Plaquenil or Enbrel? Why is there so many treatment options available — and when should each be used?
The answer lies in the fact that the human immune system is incredibly complex and even doctors are only just coming to understand the intricacies of how auto-immune diseases like Still’s Disease actually function. Despite having many different options available to them, your rheumatologist will most likely approach the treating of your illness in a very systematic way.
Five tips to help loved ones come to terms with Still’s Disease
Still’s Disease will almost certainly have a large impact on your life. There’s no doubt: living day-in, day-out with pain, the loss of your previously good health and battling with medication is not an easy thing to do.
But what about the other people in your life? As people that care deeply for you, your friends and family can often feel helpless, frustrated and left in the dark. It can be destroying to see someone that you love that is in pain, and it can make it even worse if they do not fully understand what is going on and what they can - or can’t - do for you.
These five tips can really help you explain your illness to your friends and family, and set up a supportive framework for them to understand Still’s Disease better and how it will likely effect you in the weeks, months and years to come.
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The Taking Charge of Still’s Disease Report
At www.takingchargeofstillsdisease.com you can find a balanced and informative perspective on Still’s Disease and how you can manage the illness without just having to rely on the medications that your doctor prescribes.
If scrolling through websites is not your thing, and you would rather a PDF document that you can view, print out andd distribute, the Taking Charge of Still’s Disease Report is available on www.scribd.com:
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How does a doctor respond to Still’s Disease?
Continuing with the case study of Jonathan Zarin, a 26 year old New Yorker recently diagnosed with Still’s Disease, this interview features Dr. Ed Parrish andd looks at the disease itself, how Still’s can manifest itself in different patients and some of the advances in the development of effective treatments.
I love to see how posistive Dr. Parrish is about the prognosis of Still’s Disease. Whether a cure is close or not is debatable, but the medical community is closer than ever to having pharmacological tools to completely manage the symptoms of Still’s Disease.
The original source of this video can be found here:
www.creakyjoints.org
What did you think about this interview? Leave a comment below.
A case study in Still’s Disease
Have you ever started reading an article or website about Still’s Disease and think: “Is this person even talking about the same thing that I have?!”.
The experiences of Still’s Disease sufferers are certainly not cut from the same cookie-cutter. While Still’s Disease sufferer’s share similar symptoms as one another (rash, joint pain, fever and so on,) the onset, severity and circumstances can be very different from one case study to the next.
These two videos look at Jonathan Zarin’s experience with Still’s Disease. It’s important to look at other people’s experiences with this illness… in a world where there isn’t a lot of information or support about Still’s Disease, it’s good to know that you are not alone.
Jonathan Zarin Interview, part one:
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Generic drugs are dangerous and inefffective
Or so many people think.
In actual fact, generic drugs are every bit as good as the more expensive brand name drugs. Here is an extract written for the FDA office of generic drugs discussing generic drugs versus their brand name counterparts:
I am often asked if generic drugs are really as good as their brand-name counterparts. After all, goes the reasoning, don’t you get what you pay for?
Generic drugs are copies of brand-name drugs that have exactly the same dosage, intended use, effects, side effects, route of administration, risks, safety, and strength as the original drug. In other words, their pharmacological effects are exactly the same as those of their brand-name counterparts.
Is taking Methotrexate the same as starting chemotherapy?
For those that know my story (if not, join the mailing list!) I ‘went it alone’ without drug treatment for close to two years. A big part of that decision was due to what was written on my latest prescription from the rheumatologist: Methotrexate, 20mg.
You see, I didn’t actually read “Methotrexate 20mg”. I read:
“Chemotherapy: take until hair falls out, violent nausea takes hold and you become a CANCER patient.”
Looking back, I see this as a complete over-reaction, but it is a knee-jerk response that many people with inflammatory diseases like Still’s Disease have when the doctor starts to talk about Methotrexate as a treatment. The purpose of this post is to clear up some of the misunderstandings about methotrexate and give you a few key tips if you are about to start taking methotrexate.
Can you communicate with your doctor?
Doctors can be a funny bunch. All too often specialists an come across more as scientists who view your illness as a fascinating problem to be solved rather than caring, empathetic healers. This is not to say that every rheumatologist is to be tarred with the same brush, but regardless of which doctor you see, there are five key strategies that you can use to communicate effectively with your practitioner.
1. “Look into my eyes… deep into my eyes…”
Okay, well we don’t want to hypnotise our doctors, but making eye contact is a key communication strategy. With the trappings of the modern consulting rooms doctors can be easily distracted by test results, computers, notes, telephony systems and everything else that is there to make life easier and more efficient.
Wait until your doctor has finished with the distraction and you can make direct eye contact with them.
The Five Stages of Coming to Terms With Diagnosis
There I was, sitting in the doctor’s office when he looked me in the eye and said “Chris, I believe that you have Adult Onset Still’s Disease”.
“Okay,” I thought to myself. “So what? Just give me the cure and let’s just call this brief patient-doctor relationship a success and shake hands and say ta-ta.”
It wasn’t until I started the marathon research session over the next few days did I realise the gravitas of the situation. I had an incurable disease. That would almost undoubtedly cause more pain than it had already caused. The symptoms could be managed, but only with the help of heavy-duty medication. This, most certainly, was not a bad case of the flu.
Right there, at my computer, I felt my heart break. “No!” I thought to myself. “This is not happening to me!”
Little did I know that I had already started my journey with grief. When we normally think of grief it tells the story of loss. We feel grief at the passing of a close friend or family member, and we mourn accordingly. Of course, when a diagnosis like Still’s Disease is handed down, there is also loss - but in a different way….
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