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.

One: New York Yankees vs. The Little League

I don’t want to trivialise Methotrexate — becuase it is a powerful drug — but we need to get perspective here. Methotrexate is not chemotherapy. Firstly, chemotherapy is made up of a great deal more drugs than just Methotrexate, with exotic names like Leucovorin and Doxorubicin and other multi-syllabic drugs. Secondly, the methotrexate dose for use in controlling the symptoms of Still’s Disease is by far more diluted than the therapeutic dose of Methotrexate in chemotherapy. Where rheumatoid patients will seldom be prescribed more than 30mg of Methotrexate weekly, patients in the oncology ward are taking ten to twenty times that dose.

So comparing your Methotrexate dose to that of a person with breast cancer is like putting the New York Yankees up against the West Tahoe lil’ Tigers in the little league… Sure, it’s still the same game, but at a completely different level.

Two: Folate Acid isn’t Just For Pregnancy

Another pill that is often stereotyped is Folate Acid – not a drug, per se, but a naturally occuring substance that is noramlly associated with mothers-to-be that are trying to avoid any birth defects. So what do healthy babies have to do with Methotreexate? Not much. But folate acid is an exceptional cover for any symptoms of Methotrexate.

While I can’t promise that you won’t experience any side effects from taking Methotrexate, I can tell you that I’ve been taking up to 30mg of Methotrexate weekly with a cover of 5mg Folate Acid per day for over two years with nothing more than an upset stomach. So don’t go wig shopping for fear that you’ll lose your hair — with an appropriate folate acid prescription you’ll hardly know that you’re taking MTX (except for feeling a whole tonne better!)

Three: 1 + 1 Usually Equals 5

Before you start questioning my questionable mathematical skills, hear me out. There is a peculiar occurence in Still’s Disease treatment (that is not particularly well understood) called double (or triple) therapy.

The idea behind double therapy is that Methotrexate actaully increases the effectiveness of other drugs. Patients that have failed on Sulfasalazyne treatment and Methotrexate therapy seperately are amazed to see their symptoms fade away to nothing when the two drugs are used in conjunction. Pretty cool, huh?

This unusual occurence of synergy also works with Plaquenil, cyclosporine, Enbrel and a whole other host of common DMARDs and bilogic therapies.

So, what that means for you is that with the right combo of drugs, you and your doctor will quite possible be able to greatly reduce your dosage of seperate drugs by combing the whole lot together.

Four: Don’t Turn The Nursery Into A Media Room.

Another popular misconception is that Merthotrexate means the end of baby-making and inevitably means turning the planned baby’s room into a media room. Well, don’t pick up that paint brush quite yet.

It’s true that Methotrexate is dangerous when combined with a fertile egg and a batch of fresh swimmers, but the contra-indication is only good for when the drug is active in the body. When it comes to Methotrexate, the experts reckon that it’s all gone within three months.

Want to get a little one on the way? Talk to your doctor, bump up your steroid dose to cover your symptoms, put your MTX prescription on hold and eat well for a quarter. Then, it’s up to you and your partner to start that sweet Boom-Chikka-Wah-Wah.

Five: You Don’t Need to Be A Tee-Totaller.

Ooooh… this one’s a bit controversial.

Your doctor will probably tell you that Methotrexate and alcohol are not good bedfellows, but this doesn’t necessarily mean that this is the end of your drinking days.

Now before my inbox is flooded with emails from angry doctors across the globe, let me moderate this statement. Methotrexate puts strain on your liver and it means that it you won’t be able to process alcohol as well as you might normally do. As such, your half-a-bottle-of-Tequila days are most certainly done. But that doesn’t mean that you can’t enjoy a glass of wine once or twice a week. So long as you don’t drink on the day of or either side of your dose, your body will be able to handle a small tipple.

Remember that alcohol (in moderation) has some modest anti-inflammatory properties and some beverages contain valuable anti-oxidants. So, don’t believe that alcohol is the devil’s drink just becasue you’re on Methotrexate.

Caveat: I’m not a doctor. Always follow medical advice over mine. Always talk to your doctor about the medications that you are prescribed.

I’d love to hear what your experiences are with Methotrexate — please leave a comment below, or head on over to the community forum.

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.

The first treatment stage: Controlling the inflammation

If you have just been diagnosed with Still’s Disease, it is likely that your doctor will prescribe you both a prescription strength NSAID and a corticosteroid like prednisone. The aim of the game here is to control the inflammtion that causes pain, swelling and discomfort very quickly. Both NSAIDs and corticosteroids are very effective at offering rapid relief.

Although effective in the intial phases, steroids are not often used as a long term treatment option due to the severe side effects that are associated with these drugs and low long term tolerability. On the other hand, NSAIDs are useful tools, but most sufferers will not be able to control the disease with anti-inflammatory drugs alone.

The second treatment stage: Preventing long term damage.

Once the inflammation has been controlled, your doctor will want to get you on a DMARD (disease modifying anti-rheumatic drug).

It is here where it all gets complicated.

Still’s Disease for one is not necessarily Still’s Disease for the next. Different sufferers have different parts of the immune system that are disfunctional. To put this into perspective, the immune system contains over 40 different types of cytokines (a type of cell that allows the immune system to communicate with itself), B-Cells, T-Cells, Tumor Necrosis Factor cells, and macrophages… and any one of these could be causing your inflammation. And you guessed it: each is treated with a different drug.

The first line in treatment is usually either Methotrexate or Sulfasalazine. These drugs are considered generally effective when used correctly and are relatively well tolerated by most patients. For many sufferers, they will find that Methotrexate alone will be enough to control the illness indefinitely. Others, however, will find that their improvement is only modest and will need to explore the next stage in treatment options.

The third treatment stage: Doubling up

One of the peculiar attibutes of DMARDs is that they often work very well when combined together. Someone that does not initially respond well to Methotrexate alone will find that the efficacy of the treatment skyrockets as soon as another DMARD is added into the mix. At this stage, doctors will commonly prescribe sulphur based medication, malaria medication such as hydroxychloroquine (Plaquenil), gold salts or other more exotic medications such as the anti-transplant-rejection medication cyclosporin (Neoral) to increase the effectiveness of the Methotrexate.

These drugs suppress the general immune system, but many patients find that the treatment remains ineffective. In these cases, it is likely that your symptoms are controlled by one of the specialist parts of the immune system.

The fourth treatment stage: Bringing out the big guns – Biologics.

For ten years rheumatologists have been using a new class of medications known as anti-TNF biologics. These drugs, commonly referred by their brand names of Enbrel, Humira, Infliximab and Remicade provide relief to around 60-70% of Still’s Disease sufferers.

These drugs target a special immune system function known as Tumor Necrosis Factor and is responsible for cell death and the inflammatory response it encourages in the body. While these drugs are a godsend for some sufferers, others will find effective treatment continues to be ellusive.

The fifth treatment stage: Tap the T-Cells.

T Cells are one of the main enforcers of the immune system, and for a small amount of sufferers, the T-Cell delivery systems are faulty. After all other options have been exhausted, your doctor can use drugs like Aurentia to suppress T-Cell function – hopefully bringing relief.

The sixth treatment stage: Blast the B-Cells

B-Cells are the main causative agents in producing plasma – an important immune function that creates antibodies that can misfunction when a patient suffers from an autoimmune disease like Still’s Disease. Although rare, some patients’ disease function is dominated by B-Cell disfunction.  Here drugs such as Rutuximab can offer relief.

The important thing to remember about Still’s Disease treatment is that it can takes weeks, months or even years to arrive at an effective treatment regime. Don’t be too dissapointed if a medication is proving to bein effective: it is likely that your doctor will have another treatment option available. Although patience is most certainly a virtue, it is very likely that there will be a drug that will work for you — sometimes it just takes a while to arrive at an effective option.

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.

1. Tell it to ‘em straight

It’s very important that you don’t try and downplay the condition. Saying that Still’s Disease is “just a flash-name for arthritis” won’t help the situation. Uncle Tom’s arthritic thumb that aches whenever it is about to rain is not the same as Still’s Disease.

A good way of explaining Still’s Disease to a loved one is to take this four step approach:

1. Start with the basics.

This is the text-book definition of Still’s Disease. You can start by telling them that Still’s Disease is very rare and is an illness of inflammation. It causes your joints to become extremely painful, you can develop a rash very quickly and that you experience night sweats and fevers (and whatever other symptoms that you may experience).

In addition to discussing the illness with them, it’s a great idea to leave some reading material with them – so that they can digest the information at their own speed. The International Still’s Disease Foundation provides free brochures to Still’s Disease sufferers. They can be requested at the website, here.

2. Explain the treatment options

Explain to them that Still’s Disease does not have a cure, but that it is manageable with medication. It’s also important that you fully explain any new medication to them. For example, if you’ve been prescribed methotrexate, tell them that your alcohol intake needs to be significantly reduced. Telling them upfront is much better than sitting at a party looking glum while everyone trying to have a good time and is wondering why you haven’t touched your white wine spritzer.

If your medication has potential side effects, this is the time to tell them.

3. Explain how Still’s Disease progresses

Still’s Disease is often a cyclical illness and this can be a hard thing for friends and families to come to terms with. Explain to them that the illness is worse at different times of the day, and that even after weeks of feeling good the illness can flare suddenly and severely. Explaining this to loved ones can make it easier for them to understand the nature of the illness.

4. Answer their questions

Make sure that you give them an opportunity to ask you questions. Even if you don’t have all the answers (you’re not a doctor, afterall!), it is important that you discuss all of the subtleties of the illness with them. Just imagine if someone that you loved started to avoid you because they assumed that Still’s Disease was contagious!

They will have a lot of questions for you. Be patient, remain rational and talk to them.

2. Explain — in your terms — how you feel

There are definite benefits in first describing Still’s Disease to your loved one in a non-emotional, rational way. This sets up the parameters of the illness, gives you a vocabulary you can use with one another and gives them a basic knowledge of what Still’s Disease is. Once you have done this, though, you really need to step out of the ‘textbook’ mode and into the ‘feelings’ mode.

Explain to them how the illness makes you feel, both physically and emotionally. The term “pain” means different things to different people. Saying that when your knee flares it “hurts” and you “can’t put any weight on it” only tells a small part of the story. Explaining to them that when your knee flares it is like broken glass in your joints when you move it, but relatively pain free when you are not moving is getting better. Telling them that when you start to feel your knee flare you feel scared and panicky starts to give them a complete picture.

They want to help support you through your illness, but they need to know how Still’s Disease effects you, mind, body and soul.

3. Tell them how they can help.

In the eyes of a carer, there really is nothing worse than feeling useless.

Often there is not much that a loved one can do for you while you are in the middle of a bout of inflammation. Often the Still’s Disease sufferer just wants to be left alone, and moans and groans aren’t requests for help. The first thing that you can do to help your loved one care for you is to tell them when they can’t help. Explain to them that it is okay just to leave you on the couch and not to fuss if you are in the middle of a flare-up. If you tell them this before the fact, they will have a deeper level of understanding when they are trying to make you drink a cup of tea and you’re telling them just to leave you alone.

After telling them how they can’t help, tell them how they can! Supporting someone with a chronic illness goes much further than just helping when they are experiencing physical pain. As a sufferer, you will need someone to talk to, a shoulder to cry on, someone to pick up your medication once in a while, someone to go to the doctor’s office with you, someone to keep you on track with your medication, diet and exercise.

Whatever you need support with, ask for help. While this is difficult for some people to do, it is important for you to do so – and you’ll find that it is very important for your carer in order for them to feel worthwhile.

4. Work out the details.

Having a plan makes living with a chronic illness so much easier. If you are having this discussion with your spouse, sit down with them and list out all of the ways that your illness will effect your family life and start to form contingency plans. Here’s a few things that you may want to consider to start you off:

– Budget. Still’s disease medication and treatment can be very expensive. Work out ways that you can trim the budget to accommodate your medical costs while avoiding getting into debt.

– Hobbies. Were you both avid rock climbers before you got sick? Use this time to define your limitations and think of other ways you can be involved with your hobbies and activities without having to give them up.

– Vacations. Even though money may be a bit tighter now that you have Still’s Disease, now it more important than ever to take vacations. Being sick is stressful. You need to make sure that you are allocating quality time to devote to rest and relaxation with your loved ones.

– Work. Will you need to stop working, or need time off from work? Discuss with your partner options and strategies to accommodate changes to your life relating to your employment.

5. Enough about you, let’s talk about me.

If you follow these tips, your loved one will have a pretty good idea by now what Still’s Disease is, how you feel about it and some of the impacts that the illness will have on your shared life. But how are they feeling?

Your loved one will no doubt have a whirlwind of emotion flying about. As much as your life will change, so will theirs. Are they feeling hopeless? Angry? Frustrated? Scared? Encourage them to talk to you, and even though it is going to be really tough on you to live with this illness, don’t think that it is easy for the carer, either!

Managing Still’s Disease will not just be a challenge for you, it will also be a challenge for your friends and family. Focus on sharing the load and support them in supporting you.

The real secret to getting your friends and family to come to terms with your diagnosis of Still’s Disease is open, ongoing, two way communication. The people that are successful in managing Still’s Disease are the ones that have a trusted support network and share their feelings with their friends and families.

How did your friends and family react when you told them that you had Still’s Disease? Please leave a comment below.

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:

Taking Charge of Still’s Disease

What else would you like to see on the site? Please let me know by leaving a comment below!

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.

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:

Jonathan Zarin Interview, part two:

Both of these videos can be found at their original source here:

http://www.creakyjoints.org/

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.

Many people become concerned because generic drugs are often substantially cheaper than the brand-name versions. They wonder if the quality and effectiveness have been compromised to make the less expensive products. The FDA (U.S. Food and Drug Administration) requires that generic drugs be as safe and effective as brand-name drugs.

Actually, generic drugs are only cheaper because the manufacturers have not had the expenses of developing and marketing a new drug. When a company brings a new drug onto the market, the firm has already spent substantial money on research, development, marketing and promotion of the drug. A patent is granted that gives the company that developed the drug an exclusive right to sell the drug as long as the patent is in effect.

As the patent nears expiration, manufacturers can apply to the FDA for permission to make and sell generic versions of the drug. Without the startup costs for development of the drug, other companies can afford to make and sell it more cheaply. When multiple companies begin producing and selling a drug, the competition among them can also drive the price down even further.

So there’s no truth in the myths that generic drugs are manufactured in poorer-quality facilities or are inferior in quality to brand-name drugs. The FDA applies the same standards for all drug manufacturing facilities, and many companies manufacture both brand-name and generic drugs. In fact, the FDA estimates that 50% of generic drug production is by brand-name companies.

Another common misbelief is that generic drugs take longer to work. The FDA requires that generic drugs work as fast and as effectively as the original brand-name products.

Sometimes, generic versions of a drug have different colors, flavors, or combinations of inactive ingredients than the original medications. Trademark laws in the United States do not allow the generic drugs to look exactly like the brand-name preparation, but the active ingredients must be the same in both preparations, ensuring that both have the same medicinal effects.

Resource: Office of Generic Drugs, Center for Drug Evaluation and Research, U.S. Food and Drug Administration (FDA), 5600 Fishers Lane, Rockville MD 20857.

Source: http://www.medicinenet.com/script/main/art.asp?articlekey=46204

You can purchase generic Still’s Disease medication online usually substantially cheaper than you can from a local pharmacy. While there are a lot of scammers out there, I use and recommend www.drugdelivery.ca for buying my medication. This resource is not actually an online pharmacy, but an escrow service that works between you and the online pharmacy. That means that you can trust that you’re not going to be hung out to dry by some unscrupulous pill pusher.

You can learn more about drugdelivery.ca by clicking here.

Have you purchased drugs online? What was your experience? Leave a comment below.

]]> http://www.takingchargeofstillsdisease.com/2009/05/generic-drugs-are-dangerous-and-inefffective/feed/ 0 http://www.takingchargeofstillsdisease.com/2009/05/is-taking-methotrexate-the-same-as-starting-chemotherapy/ http://www.takingchargeofstillsdisease.com/2009/05/is-taking-methotrexate-the-same-as-starting-chemotherapy/#comments Mon, 04 May 2009 01:58:51 +0000 Chris B http://www.takingchargeofstillsdisease.com/?p=377

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.

1. One brick does not make the Taj Mahal.

The first thing that needs to be cleared up is this: Methotrexate is not chemotherapy.

Methotrexate is one of many drugs that can make up a chemotherapy treatment regime. Even so, let’s put this into perspective: When Methotrexate is prescribed for Still’s Disease it is prescribed as a Disease-Modifying-Anti-Rheumatic-Drug (DMARD) in relatively low doses. To start you off, your rheumatologist will prescribe you 10mg (or less) of Methotrexate per week. If your response is promising, your doctor may increase your dose over time to a maximum of 30mg per week. Compare this with the usual dose for Methotrexate in chemotherapy where the prescription is more along the lines of 500mg per week.,and you’ll see that it is like eating one M&M versus eating the whole bag.

Methotrexate is a toxic and dangerous drug, but as a DMARD the chances that you will bruise, lose your hair and become violently ill is about as slim as slim can be.

2. Methotrexate is not like shaving.

The most important thing to remember about Methotrexate as a treatment for Still’s Disease is that it is not a drug that you take every day. The cardinal rule is that Methotrexate must be taken only once a week. Choose a day for your Methotrexate dose, set an alarm or write it in your diary and stick to it.

When choosing your Methotrexate day, consider your lifestyle. Methotrexate can make you a bit ill the next day, so consider your commitments and choose your dose-day accordingly. My biggest tip with choosing your dose day is to avoid the weekends. It is really important that you have some quality time each week to spend with your friends and family. You don’t want to battle through the week only to be spending every Sunday feeling lousy because of your medication.

3. “I’ll have my martini VERY dry…”

And by ‘dry’ I actually mean ‘non-existent’. Methotrexate and alcohol does not mix.

Methotrexate is stored in the liver and puts you at greater risk of developing cirrhosis and fibrosis of the liver. Any alcohol consumption makes it even harded for your organs to do their job properly. When your doctor puts you on Methotrexate, they will also schedule you blood tests every six to eight weeks to monitor your liver and kidney functions to make sure that everything is staying within their normal levels, but your alchohol rules of thumb will probably be:

- No alcohol on your dose day or on the days either side;

- Your doctor may allow you one or two standard drinks per week and only on your non-dose days;

- You may not get drunk, pissy, sloshed or tipsy, ever. (Sorry)

4. Other Methotrexate sponsored stop signs

Methotrexate as a treatment for Still’s disease has some other important contraindications, namely:

- You may not use sulfa-based antibiotics while you are taking Methotrexate. Because you are a good patient that never self-medicates, it is important that you only take the drugs that you are prescribed, and if you are on any other medication, it is absolutely critical that your doctor knows about them before you start on Methotrexate.

- If you are sexually active, and could get pregnant (or get your partner pregnant), you need to be using reliable contaception like condoms or the birth-control pill. Methotrexate has been linked to birth defects and may also cause damage to sperm, so if you are planning a family, you need to talk to your doctor before starting on Methotrexate.

- Being on Methotrexate can make it more difficult for your body to fight infections and in very rare cases lead to life-threatening infections in your lungs. If you develop ulcers in your mouth, or you develop a sore throat or chest infection, let your doctor know straight away.

5. “Lean on me, when you’re not strong…”

Methotrexate can lead to folic acid deficiency which has some pretty crummy side effects including mood changes, depression, irritability, nausea and gastro-intestinal problems. As a result, your doctor will probably prescribe you a folic acid supplement to take daily which significantly reduces the side effects of the methotrexate treatment.

Folic acid supplementation generally does not have side effects, but in rare cases can cause nausea and insomnia as well as abdominal bloating and loss of appetite. As folic acid can also lead to vitamin B12 deficiency, you are also well served taking a good quality multi-vitamin to further support your medication regime.

6. Patience is a virtue

Finally, it is important that you are patient with your Methotrexate treatment. With illnesses like Still’s Disease it can take 6-8 weeks to see any improvement and up to three months to see the full effect.

In addition to playing the waiting game, your doctor may also start you on double or even triple therapy to make the Methotrexate more effective. Certain drugs when combined have increased effect upon each other. Commonly Plaquenil (hydroxychloroquine), Salazopyrin (Sulfasalazine), and Neoral (Cyclosporin) are prescribed to increase the effectiveness of the Methotrexate. This is done with the hope to reduce the reliance on corticosteroids with the ultimate goal of removing steroids as a treatment.

Be patient, take your blood tests and you will likely find that Methotrexate is a tolerable and effective medication.

Please remember that this is general advice only, and you should always talk to your doctor about any new medication that you may be starting. In the Medication section of this website you can learn more about Methotrexate by watching the short video that is posted there.

If you are starting Methotrexate, you may also be able to save big bucks on your medication costs by considering a generic brand. If you are interested, you can learn more about buying Methotrexate online by clicking here.

What has been your experience with Methotrexate? Please leave a comment below.

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.

2. “It hurts. In a prickly-throbby-crushing-stinging-burny kinda way…”

While most doctors spend more time in their studies learning about the illness rather than their communication skills, doctors are trained to think in general terms and then in specific terms. As such, when describing your symptoms, try to move from general descriptions and then refine your experience to specific statements.

For example, you might tell your doctor that you have frequently have a rash that appears on your arms, legs and trunk. Then, describe how the rash appears at night time after 6pm and has a raised, splotchy appearance that itches and is warm to touch.

4. “I feel like crud, but I look great!

Doctors are also trained to move from subjective statements to objective data. Your communication success will skyrocket if you can discuss your experience with Still’s Disease in a similar way.

For example, when describing joint pain, you might start by telling your doctor that the constant pain makes it difficult for you to walk and that makes you feel tired, fatigued and irritable. You might describe the pain on a scale of 1-10; “It’s a constant ’6′ but at nights it spikes to a solid ’8′..” Once you have described the feelings, then go on to describe exactly which joints are affected, describe the level of swelling and any other physical characteristics that the inflammation may have.

4. “Tell it to me straight doc, will I ever play the mandolin again?”

It is very important that you describe to your rheumatologist how Still’s Disease affects your life. Go into detail about the impacts that your relationships, sleep and quality of life may be experiencing as a result of your illness. This is undoubtedly the best way that you can convey to what level the illness is affecting your life and can tell your doctor much more than the results of a blood test.

It is important that you remind your doctor that you are a person and not a diagnosis or file-number.

5. “Have…you…got…that…?”

Pause between parts of your story. Give your doctor the chance to ask questions, make notes and refer to your patient file.

Although your rheumatologist is the expert on Still’s Disease, it is ultimately your responsibility to clearly communicate your story with them. Remember that while your condition has a huge impact on your life, it really has very little impact on your doctor’s. That is not to say that they don’t care – quite the contrary – but they do see 10 to 20 patients a day, every day. As such, use these communication strategies to make sure that your story is getting through to them loud and clear. You’ll be suprised at the positive impact that this will make on your health care.

How easy do you find it to communicate with your doctor? Please leave a comment below.

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….… Instead of losing someone or something close to us, we lose living without pain, we lose things that used to be easy. Life will never be the same, and we suffer loss. When we suffer loss, we start the process of grief.

1. “You, Sir, must be mistaken…”

The first stage of grief is denial. This is the voice inside your head that screams “No! You have it all wrong! I can’t be sick! You’ve mixed up the blood tests and got it all wrong! Just tell me that you’ve made a simple mistake and I won’t sue you… please?”

You won’t pause to cry or even acknowledge the diagnosis. At this point you don’t even have the illness (at least in your own head). I remember siting at a cafe eating hot chips while my girlfriend sobbed next to me. I remember thinking: “What’s the big deal? Even if I do have this ‘Still’s’ thing, I won’t even notice it. It’ll be gone before the next full moon.”

2. “Don’t get me angry. You wouldn’t like me when I’m angry…”

The next stage in the grief process is anger. You scream “why me?” and lash out at everyone and anyone. You blame the doctor for giving you the diagnosis. You blame your family for not understanding. You blame god for creating this disease and you blame Sir George Frederic Still for finding the damn thing in the first place and putting his name to it.

Probably more than anyone or anything else, so often you turn your anger back onto yourself and blame yourself for getting sick. When you are in this stage and look back with 20/20 hindsight, everything from not taking echinacea to having too many drinks last Christmas will seem the likely cause of your illness.

You fume, cry and whine.

3. “I’ll trade you one Still’s Disease for a flu, a dodgy knee and a nervous tic…”

Once the anger subsides, the bargaining stage of the grief process begins. Although this is almost never rational, you hold negotiations with yourself (“Once I stop hurting, I’ll go to the gym four times a week and never eat chocolate again”), with God (“Dear God, what’s the chance of throwing a brother a lifeline here?) or with the doctor (“I know you have a new drug up your sleeve. I’ll be part of the test trial. C’mon, it’ll be a win-win!”) and with anyone else that could be part of a trade.

It is not uncommon for people in this stage to wish, pray and beg.

4. “Excuse me, someone’s left their black dog here with me…”

Depression follows the bargaining stage. I remember feeling completely hopeless, lying in bed with tears streaming down my face, thinking to myself “How can I live like this for the next 50 years?!”. I slid quickly into a black hole of bitterness, self pity and numbness.

In this stage, all hopes at gaining any control back over your life seem to slip out of your grasp. This stage often has side effects. Drug and alcohol abuse, addictions to food, sex or anything else that brings pleasure – no matter how fleetingly – often take hold in this stage.

Unless resolved, many people stay in this stage for weeks, months or even years slipping further away from the final stage.

5. “I wouldn’t invite it to dinner, but we’re getting along now…”

The final stage of the grief process is acceptance. This doesn’t mean the difficulty of living with the illness is any less, but the walls of resistance are broken down. Instead of fighting the diagnosis, you accept the illness as part of you and your life. In this stage many people find a silver lining to their illness: maybe it introduced you to someone or something that you appreciate. Maybe it allowed you to find faith or spirituality. Whatever it is, illness – believe it or not – can be a major personal development tool.

Everyone has heard the story of the cancer patient that hours before their death find suddently find peace and beam with a radiance that they never had found in their ‘healthy’ life. Acceptance can appear in the most unlikely of situations.

The interesting thing about the grief process is that the stages are sequential. You will always move through denial before reaching anger, and so on. So how long does the grief process take? Well, that depends. Some can move through the process relatively quickly, while others stagnate in a stage for weeks or months. Getting counselling through a qualified therapist helped me, as well as dedicated meditation practice.

Remember that this process isn’t something to fight. It’s normal to feel pain, anger, loss and frustration when a diagnosis like Still’s Disease is handed down – it proves that we’re human. When we embrace these feelings instead of resisting them, we gradually move towards strength, healing and ultimately accepeptance.

What stage in the grief process are you? Please leave a comment below.