Taking Charge of Still's Disease

Taking Charge of Still’s Disease

A report designed to help you understand your illness and take charge of your health

Learn more at:

www.takingchargeofstillsdisease.com

All rights reserved: www.takingchargeofstillsdisease.com

Disclaimer

The Author of this report is not a doctor and the information contained within should not be

construed as medical advice.

This information is delivered in good faith.

Government Disclosure Statement: The information, products and statements (herein

contents) contained in this web site have not been evaluated by the US food and drug

administration. The contents are not intended to diagnose, treat, prevent or cure any disease.

The contents are for informational purposes only and Taking Control of Still’s Disease makes

no claim to the accuracy or fitness for a particular purpose. The contents should not to be

construed as a substitute for treatment or professional medical advice. Your continued use of

the contents constitutes your agreement to be bound by the terms of use. Any actions arising

out of or in connection with the contents are at your sole liability. This legal notice may be

changed from time to time and without notice.


Symptoms

What is Adult Onset Still's Disease?

Adult Onset Still's Disease (or AOSD) is a very rare auto-

immune illness that affects only one person in every 100,000.

It affects both men and women and strikes people in the prime

of their lives - usually from the ages of 18-40.

Adult Onset Still's Disease falls into a category of illness known

as rheumatic disease. Simply put, AOSD is a disease of

inflammation. As it progresses through the body it causes the

inflammation of the joints, tissues and organs of the diagnosed

person.

Adult Onset Still's Disease is known as a systemic disease - it

moves progressively through the body and effects different

bodily systems.

How will Adult Onset Still's Disease Affect Me?

Still's Disease is not a paint-by-numbers illness. In fact, one

person's experience may be significantly different from

another's in terms of symptoms and intensity. With that said,

there are almost certainly a set of symptoms that all sufferers of

Still's Disease will share.

Still’s Disease

is not a paint-

by-numbers

illness.

“

”


When describing Adult Onset Still's Disease symptoms, it is

useful to look at the initial acute onset of the disease and the

long term chronic phase of the illness.

The Acute Phase

The acute phase describes the severe, relatively short lived set

of symptoms that ususally appear at the onset of the disease.

This phase lasts from two to four weeks, but may extend as

long as a couple of months.

Sore Throat

The illness usually starts with a sore throat that is

similar in sensation and intensity to an average winter

cold. From this point, almost all patients will experience

several symptoms including severe joint and muscle

pain, rashes and a high fever.

Joint Pain

Inflammation and pain during the acute phase may

strike any joint in the body, but is most common in the

knees, ankles and wrists. The pain is often extreme: For

example, an affected knee would probably prevent you

walking, moving the joint through its range of motion

or stretching in any way. The affected joint is often

visibly swollen and warm to touch. The nature of the

illness is that multiple joints are often affected at the

same time (your doctor might describe this to you as

being poly-articular).

There

are two phases

of the illness:

the short term

acute stage

and the long

term chronic

phase.

“

”


The inflammation process is very complex - in fact,

your doctor might even have problems explaining it to

you in detail! With that said, you don't really need to

have an in-depth knowledge of the inflammation

process to understand Adult Onset Still's Disease... just

like you don't need to know how a car works in order

to drive to work, it isn't critical to fully comprehend the

science behind the inflammation process.

With auto-immune diseases like Still’s Disease, the

body misidentifies parts of itself as a foreign invader

and attacks itself, causing pain and inflammation. For

example, with Still’s Disease, the body labels the

synovium (this is the fluid that lubricates your joints) as

an unwelcome guest and sends the body’s inflammatory

agents and defence systems to combat the “invader”.

Once this process starts, the trademark pain and

inflammation cycle continues throughout the acute

and chronic phases of the illness.

Rash

The next most common symptom is a salmon coloured

rash that moves across the body. The rash is usually

splotchy, slightly raised and fairly localized. The most

peculiar thing about the rash is that it often appears

without warning in a varitety of positions - one

morning on your thighs... that afternoon on the upper

arm... an hour later on your chest. The rash then often

disappears as quickly as it arises.

The acute phase

is categorised

by:

- Sore throat

- Rash

- Joint pain

- Fever

- Internal

swelling

”

“


Some people that have Adult Onset Still's Disease find

that there is not a discernable sensation that

accompanies the rash. For others, the rash can be

unbearably itchy or can feel like a mild sunburn.

Creams, ointments and cold packs do not usually bring

any relief.

Fever

Sufferers of Adult Onset Still's Disease almost always

experience a fever that often spikes to over 40 degrees

centigrade.

The fever waxes and wanes throughout the day, and is

usually the highest in the late afternoon or evening. In

the morning and throughout the day, a normal (36-37

degree) temperature is normally recorded by the

patient.

Another common experience for Still's Disease sufferers

is the incidence of night sweats that accompany the

fevers. These sweating episodes are normally drenching

- completely saturating your bedding. During these

sweats, dehydration becomes a real risk.

Internal Swelling

Although less common, sufferers may experience

swelling of the spleen, lymph nodes and lining around

the heart (pericarditis). Depending on the severity of

the swelling, this may lead to pain in the chest and

abdomen and may require hospitalisation.

Still’s sufferers

spike with fevers

over 40 degrees

centigrade –

that’s 104

degrees

Fahrenheit.

“

”


The Chronic Phase

Some people that are diagnosed with Adult Onset Still's

Disease only ever experience one acute episode. These cases are

the minority, however. For the majority of AOSD sufferers, the

illness moves into a long term chronic phase.

The rash, internal swelling and fever components of the illness

normally subside during this phase of the illness. Joint pain due

to the rheumatic component of the disease is often present

throughout the chronic phase of the illness. Although not

usually as severe as the initial onset, chronic inflammation of

the joints often leads to pain, discomfort and disability.

It is of the utmost importance that you have a carefully

considered plan to manage the chronic phase of the illness. I

understand that you may be reluctant to start a long term

medication regime, but it is critical that you don't try and "go it

alone" while the disease is in the chronic phase.

The most severe complication of chronic Adult Onset Still's

Disease is without a doubt joint destruction.

As the body continues to attack the synovial fluid around the

joints, the cartilage, tendons and ligaments that form the joint

can break down and cause permanent damage. Once the

damage has been done, it is irreversible and can only be

assisted by surgery.

This is not a path that you want to follow.

There are other untold effects of suffering with Adult Onset

Still's Disease. Living with pain and limitations on your

It is of the

utmost

importance that

you have a

carefully

considered plan

to manage the

chronic phase of

the illness.

“

”


lifestyle is frustrating and can seem to take over your life.

Many sufferers of Adult Onset Still's Disease develop other

conditions, and the onset of depression is common. This is

often caused by the pressure not only on the patient, but the

family and support network of the person living with Still's

Disease.

Flare Ups

Adult Onset Still's Disease seems to be a cyclical illness, and

acute episodes, or "flare ups" occur with most sufferers. These

episodes can be as severe as the initial onset of the illness, but

are usually shorter in duration.

Acute flare ups

occur with

most Still’s

sufferers.

These

episodes can

be as severe as

the initial

onset.

“

”


The Long Term Prognosis

There is a great deal of debate surrounding the long term

prognosis of Adult Onset Still's Disease.

When looking at the prognosis of the illness, often patients

that experience onset in adulthood are grouped together with

juvenile Still's Disease (where the remission rate is generally

higher), and thereby distorting the actual figures.

Authorities estimate that sufferers of Adult Onset Still's Disease

will fit into one of four groups:

1. A small percentage of patients experience one acute

episode and then go into complete remission.

2. Roughly a third (although this may be an inflated

figure) of sufferers move into complete remission after a

ten year time frame.

3. Approximately a third of sufferers will continue with

the illness, but experience only infrequent flare ups and

are almost completely managed by medication.

4. The remainder of the AOSD population continue to

suffer with the illness indefinitely.

For those that fit into the last group, the disease normally

becomes harder to live with - not easier. The illness becomes less

responsive to medication as the inflammation of the illness

becomes greater than the suppressive force of the treatment.

Adult Onset Still's Disease waxes and wanes, not only throughout

the day, but also throughout the life of the illness. Many people

This illness

usually

becomes

harder to deal

with – not

easier.

“

”


experience weeks or months of remission or reduced symptoms,

only for the disease to resurface later on down the road.

The Cloud's Silver Lining

If you have been only recently diagnosed with Adult Onset

Still's Disease, the prognosis of the illness can be very

confronting. So often Still's Disease strikes with no regard to

physical health, family history or environment.

To be told that you have a disease that may impact your life

greatly for a significant period of time can be a daunting

prospect.

The silver lining that shines out from the black cloud of Adult

Onset Still's Disease is that there is -- most certainly -- hope.

Yes, you will probably need to make changes to your lifestyle,

however if you follow the advice of your medical team and

consider the recommendations made in this report, this illness

is almost always completely manageable.

There is –

most certainly

– hope. “ ”


Still’s Disease Diagnosis

Your Medical Team

There will be at least two important members of your medical

team: your general practitioner or family doctor and your

specialist.

Your specialist, as the name implies, has a high level of

expertise in dealing with inflammatory diseases like Adult

Onset Still's Disease. In most cases your specialist will be a

rheumatologist, although you may also be referred to an

immunologist or a general physician.

Rheumatologists deal exclusively with inflammatory and auto-

immune diseases like rheumatoid arthritis, lupus and ulcerative

colitis, and have the necessary skills and expertise to prescribe

you a treatment regime that will help you manage the

symptoms of Adult Onset Still's Disease.

Although you will be referred to a specialist relatively quickly

by your family doctor, he or she is still a vital component of

your AOSD management plan. The main problem with

rheumatologists is that they are often booked solid for weeks

or months in the future – inflammation is a popular illness.

Your GP, in most cases, will be much more accessible and will

help you with a course of action to deal with related

complaints, prescriptions and any new symptoms that you may

experience.

Your specialist

has the

expertise to

prescribe a

treatment

regime that

will help you

manage the

symptoms.

“

”


Although your GP may refer you back to your rheumatologist,

they may be able to offer help in the meantime, either by way

of offering support or by providing an interim medication or

recommendation.

The other medical professionals that you may deal with over

the course of your illness are radiologists (if x-rays are

required), physiotherapists and a pathology technician who

will take your blood when tests are required.

Of critical importance is your relationship with your medical

team. It is very important that you not only trust your medical

team, but that you know how to effectively communicate with

them. If you are part of the Taking Control Of Still's Disease

newsletter, you'll be receiving practical tips and techniques

that you can use to maximise your relationship with your

medical team.

What Causes Adult Onset Still's Disease?

Newly diagnosed patients will always want to know how the

contracted the disease in the first place... this is not an easy

question to answer. Adult Onset Still's Disease is what is

known as an idiopathic disease, meaning that the aetiology or

cause of the illness is not yet understood.

The most common theory regarding the origin of the illness is

that it is an auto-immune illness, possibly caused by an

infection or microbe. Basically this means that the body

becomes hyper-sensitive to itself and begins attacking healthy

Of critical

importance is

your

relationship

with your

medical team

“

”


tissue. In the case of AOSD, the body's immune system targets

the lining around the joints, organs and other bodily systems.

Diagnosing Adult Onset Still's Disease

If I could take the liberty of making an educated guess, I would

say that your doctor was not able to diagnose you with Adult

Onset Still's Disease before you had taken several trips between

the blood lab and the doctor's office. Still's Disease sufferers are

often misdiagnosed with a host of other illnesses including

influenza, malaria, lupus and rheumatoid arthritis before the

correct condition is identified.

The speed in which your doctor diagnosed your illness is not a

comment on his or her competence - it is more due to the

elusiveness of Adult Onset Still's Disease itself. If we were

going to be completely accurate, AOSD is not so much a

disease as it is a collection of symptoms.

There is no definitive test that identifies Adult Onset Still's

Disease. Usually it is diagnosed by ruling out other diseases

first. Your doctor would have tested the following blood

markers to try and make a diagnosis:

Rheumatoid Factor

People that suffer with Rheumatoid Arthritis have

elevated levels of this marker. AOSD sufferers,

however, show no such elevation.

Still’s disease

is often mis-

diagnosed at

the onset and

is usually

diagnosed by

ruling other

illnesses out

first.

“

”


SLE (Lupus) Tests

Lupus, another auto-immune disease is identified

through a series of tests including CBC, ANA and ENA.

Again, Adult Onset Still's Disease patients show no such

elevation with these tests.

ESR

The ethrocyte-elevation rate indicates general

inflammation in the body. Normal ESR rates sit

between 1-15mm/hour. When AOSD is in its acute

phase, the ESR rate often exceeds 50mm/hour.

CRP

The C-Reactive Protein rate is another inflammation

marker that measures the evidence of a special protein

that is secreted by the liver. Adult Onset Still's Disease

sufferers have been known to exceed 150 units -

compared to the normal rate of less than six units.

Viral and Bacterial Indicators

You may also be tested for mosquito-borne diseases and

other viral and bacterial infection markers. The

symptoms of these illnesses can often mimic those of

AOSD.

Others

Your doctor will also order tests that measure your

haemoglobin (Hb), ferretin, blood cell size (MCV),

platelet counts, as well as others to try and form a

diagnosis.

Diagnosis can

be drawn out,

depending on

your doctor’s

experience

with Still’s

Disease.

“

”


Once these tests have been compiled, your doctor will

complete a differential diagnosis. This is the process whereby

other illnesses are ruled out before identifying the actual

disease. This can be a drawn out process, depending on your

doctor's experience dealing with Adult Onset Still's Disease.

Often you will not be diagnosed with Still's Disease until you

are referred to a specialist.


Medication

Medication - Your Doctor's Toolkit

As we have already seen, there is no medically acknowledged

cure for Adult Onset Still's Disease. With that said, there is a

widely recognised protocol used by medical doctors to manage

the symptoms of AOSD.

Generally speaking, medication is used to either suppress the

body's inflammatory response or to slow down the progression

of the illness. The drugs used to treat Adult Onset Still's

Disease are fairly heavy-duty. As such, it is very important that

you fully understand the medication that you have been

prescribed.

NSAIDs - The Front Line in Treatment

Non-steroidal anti inflammatory medication - or NSAIDs - is

the front line in managing the symptoms of Adult Onset Still's

Disease. NSAIDs are found most commonly in over-the-

counter medications such as Neurofen, Advil and aspirin.

In most cases, your doctor will prescribe you a prescription

strength NSAID that will be more effective in reducing

inflammation than your over-the-counter alternatives. The

most commonly prescribed NSAIDs for Still's Disease sufferers

are the drugs Naprosyn, Naproxyn and Brufen.

These drugs work by restricting the body's production of pro-

inflammatory agents called eicasinoids. Although the specific

The drugs used

to treat Still’s

Disease are

often fairly

heavy-duty.

“

”


way that these drugs work is a little out of the scope of this

report, you will typically expect modest pain relief using

NSAIDs. These drugs can be used both as a reactionary

medicine - taken after the joint inflammation appears - or as a

preventative medicine taken at the same time daily.

While NSAIDs have the most tolerable side-effects of any of

the medications commonly prescribed for Adult Onset Still's

Disease, it is not to say that they do not have their dangers.

The most common complaint of NSAID users are gastro-

intestinal problems. NSAIDs do not only target the processes

that trigger inflammation, they also decrease the body's ability

to produce the protective lining of the stomach. Ulcers, gastric

bleeding, nausea and diarrhoea are all side effects of NSAID

use.

If you do suffer nausea or stomach upsets while using NSAIDs,

your doctor may prescribe you a new class of anti-

inflammatory drugs called COX-2 inhibitors. These drugs have

a similar effect to other NSAIDs, but are gentler on the

stomach due to their more targeted application to the body's

inflammatory agents. This class of drug is considerably more

expensive than other NSAIDs.

The most important thing, however, is that you understand

your medication. This includes the effects, risks and

contraindications of any medication that is prescribed to you.

If you are not sure, ask your doctor.

The most

important thing

is that you

understand

your

medication.

“

”


Steroids - Relief at a Price

The most effective medication that your doctor will have in

their tool kit for treating Adult Onset Still's Disease is

undoubtedly corticosteroids.

These types of steroids differ from the infamous anabolic

steroids that are used to increase muscle mass. Corticosteroid

(sometimes referred to as glucosteroids) mimic the function of

the adrenal gland's production of hormones that have a

profound effect on the body's inflammatory response.

Synthetic corticosteroids such as prednisone and prednisolone

are used for a variety of applications from asthma to migraines.

They are particularly effective in the treatment of auto-

immune diseases.

People that are crippled in the acute phase of Adult Onset

Still's Disease are often amazed to see their symptoms be

"switched off" after only a few days of taking corticosteroids.

The dramatic results come with a dark side, however.

Even short term use of corticosteroids can lead to a slew of side

effects including weight gain, depression, acne, osteoporosis

and an increased risk of infection. Long term use increases the

risk of more serious side effects such as Cushing's syndrome,

tumours, changes in mood and personality and eye

degeneration.

Corticosteroids cause physical dependency within only a few

days of commencing treatment. As such, it is vitally important

that you do not stop taking your dose without explicit

instruction from your doctor. Even missing one dose can lead

Steroids may

seem like

miracle drugs,

but above all

else they need

to be

respected.

“

”


to a crash of your adrenal system... this is not an experience

that you should ever want to go through!

When it is time to stop taking corticosteroids, this must be

done very slowly. For example, weening off a relatively small

dose of 10mg per day may take as long as a year to accomplish.

If your doctor prescribes you corticosteroids, it is very

important to discuss their long term medication plan for

treating your condition. During the initial onset of the illness,

a maximum dose of 60mg of prednisone or prednisolone may

be prescribed to you. With that said, steroids need to be used as

sparingly as possible - and if possible - avoided as part of a long

term treatment plan.

Corticosteroids may seem like miracle drugs, but above all else,

they need to be respected.

DMARDs - Preventing Long Term Damage

Disease modifying anti-rheumatic drugs (DMARDs) are a

group of drugs that slow down the progression of Adult Onset

Still's Disease and other rheumatic illnesses, particularly joint

damage. There are over a dozen drugs that fit into the DMARD

category, but we'll take a look at the some of the most

commonly prescribed DMARDs used in the treatment of Adult

Onset Still's Disease in more detail.

Sulfasalazyne

Going by the brand names of Azulfidine and

Salazopyrin, Sulfasalazyne is a sulphur based

DMARDs

slow the

progression of

the illness and

minimise its

symptoms.

“

”


medication that is often used as the DMARD of choice

by rheumatologists due to its relatively minor side

effects. Sulfasalzyne seems to work by reducing

inflammatory mediators in the body.

Due to the fact that this drug increases the body's

toxicity, nausea is the most common side effect with

Sulfasalazyne use. The drug can also cause headaches,

mouth sores and diarrhoea. These side effects are

normally controlled by adjusting the dosage. In rare

cases, Sulfasalazyne can cause fever and an intense

itching rash. These symptoms disappear once the

medication is stopped.

Methotrexate (MTX)

Methotrexate (MTX) is the next most commonly

prescribed DMARD in the treatment of Adult Onset

Still's Disease.

Methotrexate is a slow acting, but effective medication

that is taken only once a week by the patient. While

Methotrexate does not have major side effects (although

nausea is not uncommon), it is important that it is not

used in conjunction with sulfa-antibiotics, and alcohol

should be avoided while on Methotrexate.

Also very importantly, pregnancy needs to be strictly

avoided while taking Methotrexate. If you are sexually

active and could get pregnant, you need to be using

effective contraception.

DMARDs

that are

effective in

treating

rheumatic

illnesses are

sometimes

discovered

quite by

accident.

“

”


It is important to be patient with Methotrexate, as it

can take two or more months to show any significant

effects. Your rheumatologist will also schedule regular

blood tests while you are on Methotrexate to ensure

that your liver or blood count is not irritated by the

medication.

Anti-Malarial Medication

Anti malarial drugs such as chloroquine and

hydroxychloroquine are also used in the treatment of

rheumatic conditions. While they have a mild

immunosuppressant function on their own, they are

often used to increase the effectiveness of Methotrexate.

The biggest benefit of combining chloroquine (most

commonly prescribed under the brand name Plaquenil)

with other DMARDs is that they are steroid sparing -

allowing you to reduce the dosage of the more powerful

- but more dangerous - corticosteroids.

The typical side effects of Plaquenil and other

chloroquine brands are dizziness, headaches and rashes.

In rare cases, damage to the eye can lead to loss of

vision. As such, your doctor will ask you to undergo

regular eye checks to ensure that there is no macular

degeneration present.

TNF- Inhibitors

There are a set of new drugs on the DMARD scene that

are proving to be very effective in the fight against

Adult Onset Still's Disease, known as Tumor Necrosis

Methotrexate

is often used in

conjunction

with other

medicines

which often

increases the

effectiveness of

the drug.

“

”


Factor alpha (TNF alpha) Inhibitors. These drugs are

very effective in significantly reducing the body's

inflammatory response to Still's Disease.

TNF Inhibitors are currently available in the US under

the brand names of Humira, Infliximab and Entracept

and are administered by a weekly injection. These drugs

are very expensive; in fact, typical retail prices of these

drugs are around $18,000 per year.

Before prescribing you a TNF inhibitor, your doctor

will conduct a series of blood tests to make sure that

you do not carry Lupus, Tuberculosis or other

infections.

Minocycline

Another type of therapy that is gaining momentum, but

still remains controversial is Minocycline therapy.

Minocycline is an antibiotic that is used commonly for

acne and mild skin infections, however it also exhibits

some immunosuppressant properties by inhibiting the

cell death that leads to inflammation.

Rheumatologists are in debate of the virtues of

Minocycline treatment, and to date no serious

controlled experiments have been conducted. Should

this treatment be accepted into the mainstream medical

protocol of treating Adult Onset Still's Disease, it could

prove beneficial for patients to avoid the dangerous side

Some

Still’s Disease

medications can

be extremely

expensive.

“

”


effects of taking corticosteroids and the more heavy-

duty DMARDs.

Although medication is an important and usually necessary

part of your Adult Onset Still's Disease management plan, it

should not be your only consideration.

The next part of this report looks at alternative therapies that

have been scientifically proven to assist in the management of

illnesses like Adult Onset Still's Disease.

Although

medication is an

important and

usually

necessary part

of your

management

plan, it should

not be your only

consideration.

“

”


Alternative Therapies

Alternative Therapies - Compliments to your

Management Plan

Alternative therapies can play an important part in your Adult

Onset Still's Disease management plan. Alternative therapies

used to lie on the fringe of the orthodox medical society, but

are now increasingly considered as viable compliments to

orthodox medicine.

This page is not meant to be a comprehensive guide to

alternative therapies - that could take up a whole report by

itself! This is intended to be an introduction to some of the

more established therapies that have established credibility in

treating illnesses like Adult Onset Still's Disease.

Traditional Chinese Medicine - Balancing Ying

and Yang

Traditional Chinese medicine, or TCM, covers a diverse range

of therapies from herbs to martial arts to acupuncture. The

premise of all these therapies centers around the idea that the

human body is not made up of individual 'parts' but is rather

one inter-related system. For example, the heart is not seen as

an individual muscle that pumps blood, but is seen as a

function that influences the liver, spleen, lungs and so on.

This interconnected system is goverened by the flow of chi

through the body. This 'life force' flows through the body's

systems and is goverened by meridians or pathways located in

Alternative

therapies are

now seen as a

viable

compliment to

orthodox

medicine.

“

”


various parts of the body. Ill health is caused by disruptions to

these meridians.

In the most well known of TCMs, acupuncture seeks to align

these meridians by inserting very fine needles into specific

parts of the body. Acupuncture has been scientifically proven

to assist in a wide range of illnesses, but the jury is still out

regarding its effectiveness in managing Adult Onset Still's

Disease. Acupuncture may be more effective as a tool to assist

your general wellbeing than providing lasting relief to the

symprtoms of AOSD.

If you decide to include acupuncture as part of your

management plan, you can expect your practitioner to perform

a diagnosis by analyzing your pulse, the surface of your tongue

and by interview. A session normally lasts around an hour, and

you will be ususally required to make follow up sessions.

Acupuncture is considered to be be completely safe when

administered by a qualified practitioner.

Homeopathy - Like Curing Like

Homeopathy is an established natural therapy that treats

patients by prescribing a remedy that consists of a compound

extremely diluted in water or alchohol. Don't think that the

dilution makes the remedy less effective; homeopaths work

under the premise that the process in which the remedy is

prepared 'activates' the solution. In fact, as the remedy

becomes more diluted, it becomes more potent.

Acupuncture

may be an

effective tool

in assisting

your general

well-being.

“

”


Homeopaths aim to identify the root cause of the illness and

believe that until this underlying problem is resolved, the

patient's ill health will continue. This is a holistic therapy and

homeopaths believe that the root cause of the illness may lie in

the patient's physical body, emotional state or spiritual body.

Once this root cause has been identified, the homeopath will

use the concept of 'like curing like' to cure the illness. When

certain compounds (made from herbs, plants, minerals and

even organic tissue) are made into a remedy and given to

healthy people, they exhibit the symptoms of the particular

illness. When these same remedies are given to a person that

actually suffers from the illness, this leads to a complete cure in

the homeopathic paradigm.

Homeopathy is well established, particularly in Europe. Its

effectiveness in treating Adult Onset Still's Disease and other

rheumatic conditions is still debated. It is considered as a safe

theray and does not have significant side effects or

contraindications.

Physical Therapies - A Healing Touch

Massage therapists, osteopaths, physiotherapists and

chiropractors are all practitioners of physical therapy. On top

of this list there are a host of other therapies like Bowen

therapy, Rolfing, Kinesiology and Fendelkrais that all focus on

the manipulation and treatment of the body.

Homeopathy is

well

established,

but its

effectiveness in

treating

rheumatic

conditions is

still debated.

“

”


The claims of physical therapists vary - from relief of the

symptoms of Adult Onset Still's Disease to an all-out cure.

While this claim that Still's Disease can be cured by

manipulating the spine, joints or muscles in the body is far

from proven, physical therapy can certainly relieve pain,

promote general wellbeing and restore mobility, especially to

the joints affected by the arthritic component of the illness.

These therapies are generally considered safe when practised

by an experienced practitioner - with one major exception.

When you suffer from Adult Onset Still's Disease, there is a

vertebrae in the neck that is often specifically weakened.

Because of this, any manipulation of the neck should be

avoided at all costs! This will be especially true if you see a

chiropractor or osteopath. If you do see one of these

practitioners, make sure that they understand this risk. If they

debate this, or seem unsure in any way, find another

practitioner!

An Important Caution

Obviously, this is not a comprehensive guide to alternative

therapies that may help with Adult Onset Still's Disease. The

thing that is true for all alternative therapies is that they

should only ever form a part of you management plan.

At this point I just want to make one thing very clear:

YOU HAVE A SERIOUS ILLNESS.

When you

only have a

hammer, every

problem looks

like a nail.

“

”


I know that this may seem like a case of stating the obvious,

but it is important that you fully understand the implications

of this. The idea that Adult Onset Still's Disease can be

completely cured by alternative therapy alone is not proven

and is highly doubtful. The simple fact is that Adult Onset

Still's Disease can lead to serious, permanent joint damage if

you do not reduce the inflammation and stop the progression

of the disease.

The tendency of many health practitioners (and this includes

medical doctors!) is that the often believe that their method is the

only method worth trying. Have you ever heard the saying:

"When you only have a hammer, every problem looks like a

nail"? This can be definitely applied to health care! The secret of

lasting health lies in a balanced approach.

When considering an alternative therapy, talk it over with your

doctor first. According to research, two-thirds of patients

suffering from arthritic diseases like Adult Onset Still's Disease

will try an alternative therapy. This means that your doctor will

probably be a lot more open to the idea of you trying a therapy

that compliments the medical treatment than you first may have

thought.

Remember, what you are trying to accomplish is a well balanced

plan. Do you think Donald Trump makes all of his financial

decisions by himself? Of course not. He uses financial advisors

for that. Do you think he only uses one advisor? Of course not!

He would have several different advisors, all giving him advice

from different perspctives.

The secret of

lasting health

lies in a

balanced

approach.

“

”


When considering your health, you should enlist a team that has

different skills, approaches and outlooks.

The next step in taking control of Adult Onset Still's Disease is

taking a close look at some of the supplements that you should

definitely consider including into your management plan.


Supplements

Dietary Supplements - Sorting the wheat from

the chaff

If you go down to your local health food store, you will see

row upon row of expensive dietary supplements from vitamins

and minerals to tonics to balms to... well, you name it and

there's a supplement of some description that matches. With

all of the miracle claims attached to supplements, after being

diagnosed with Adult Onset Still's Disease it is tempting to buy

up hundreds of dollars worth of supplements.

You're a smart person. You know that you don't need to walk

out of your health food store with ten shopping bags crammed

full of pills, powders and potions. This section looks at the two

key supplements that you should be taking every day - Fish oil

and a quality whole food multi vitamin.

Fish Oil - The anti-inflammatory relief in a bottle.

Unless you've been living under a

rock for the last five years, you've

probably already heard about the

health benefits of fish oil and other

omega-3 sources. And with good

reason, too.

Fish, especially deep water fatty fish

have very high levels of omega-3.

This naturally occurring fatty acid has several beneficial effects

You do not

need to spend

hundreds of

dollars on

supplements to

manage your

illness.

“

”


on the body. Omega-3, taken in sufficient amounts, promotes

the creation of eicasinoids - a part of your body's anti-

inflammatory mechanism. Fish oil has been used to reduce the

severity of rheumatoid diseases for decades (do you remember

your grandmother forcing cod-liver oil down your throat?

Well, she was right!), and its effectiveness is well documented

and scientifically supported.

You can obtain omega-3 from several sources, including some

plant oils, krill (the tiny prawn-like creatures that whales eat),

mussels and other shellfish and by eating deep sea fish. By far,

the easiest to obtain and most cost effective omega-3 source is

found in medical-grade fish oil.

You can buy fish oil either as a soft-gel capsule or it can be

bought as a liquid. If you were taking fish oil as a general

wellbeing supplement, soft-gels are great. You would typically

take one or two capsules in the morning with any other

supplements that you would take. The trouble is, when taking

fish oil for the anti-inflammatory effect required to manage

your Adult Onset Still's Disease symptoms you would need to

take eight to ten capsules every day... and that is a to do on a

daily basis! Because of this reason, you should seriously

consider liquid fish oil as an alternative.

I know that those memories of the foul tasting cod liver oil are

probably flooding back to you know and the prospect of liquid

fish oil might not be an attractive option. The great thing about

many modern fish oils is that they are flavoured with plant oils

and much of the 'fishiness' is removed. This means that you

On a

scale of one to

ten for anti-

inflammatory

effectiveness,

fish oil comes

in as a twelve.

“

”


can take a small amount (10mls) of pleasantly flavoured

lemony oil and get all of the anti-inflammatory benefits of fish

oil without needing to take a handful of capsules.

Fish oil truly is the most important dietary supplement that

you can take for an illness like Adult Onset Still's Disease. In

fact, to paraphrase from Dr. Barry Sears, on a scale of one to

ten for anti-inflammatory effectiveness, fish oil comes in as a

twelve.

You have to be careful though! Not all fish oils are effectively

flavoured! Arguably the best fish oil on the market is the

Carlson brand. It is cost effective, tastes as good as fish oil can

possibly taste and comes highly recommended.

Multi-Vitamins - Getting the most from your food.

Your body has been designed over thousands of years to

extract all of the necessary minerals and vitamins that it

requires from a balanced, healthy diet.

That's the idea, anyway.

When you suffer from a chronic disease like Adult Onset Still's

Disease, however, you are well served by taking out some extra

insurance by way of a high quality multi-vitamin. Your body

needs a host of vitamins and minerals required for optimum

function, but the real important ones for people with

You are well

served by

taking out a

little added

insurance in

the form of a

multi-vitamin.

“

”


rheumatic illnesses like AOSD are vitamin C, B vitamins and

others with anti-oxidant properties like folic acid.

Vitamin C has far broader health benefits than just reducing the

severity of colds and flu. It is a powerful antioxidant that has been

shown to reduce inflammation in patients suffering with

rheumatoid arthritis. As such, it is likely that this is also an

important vitamin for sufferers of Adult Onset Still's Disease. The

B vitamin group promote a healthy immune system and have

been scientifically proven to reduce stress - certainly something

that you will be struggling with as an AOSD sufferer.

Whilst there are a host of multi-vitamins on the market, I use and

recommend the Whole Food Multi Vitamin from

www.mercola.com. It is one of the few multi-vitamins on the

market that is contains only natural ingredients, rather than

chemically synthesized minerals and vitamins. It is actually

specifically designed to complement your diet - rather than

replacing it.

Adding a good quality fish oil and multi-vitamin are essential

parts of your Adult Onset Still's Disease management plan. For

less than $50 a month, you will certainly see real benefits; both

in the reduction of your symptoms and increased energy levels.

There are a host of other supplements on the market, and some

of them may be beneficial in reducing the severity or

frequency of your symptoms as well as reducing any side-

effects that you may experience as a result of the medication

For less than

$50 a month,

you will see

real, lasting

benefits.

“

”


that you are on. I encourage you to research other supplements

that may offer you assistance


Diet for Still’s Sufferers

This part of the report will probably not tell you a lot that you

don't already know. There isn't really a secret to a healthy diet

- what you learnt in grade school about fruit and vegetables

and the importance of a balanced diet still largely holds true

today.

There is a great deal of debate around "eating for arthritis" and

whether food has any direct effect on the symptoms of

rheumatic disease. Whether or not the research has been done,

I speak from experience when I say what goes in your mouth

significantly affects the symptoms of Still's Disease, as well

impacting on your general wellbeing.

We'll start by looking at the foods to avoid when you have

Still's Disease, before looking at some of the most popular 'anti-

inflammatory' diets that are on the market.

Foods to avoid

Sugar

Processed sugar is just about everywhere. If you've

bought something in a packet, tin or jar, chances are

that it is packed with sugar. The amount of sugar in the

modern western diet has serious health implications,

most commonly seen in its role in obesity and diabetes.

As if this isn't enough, sugar has added implications for

you and your Still's Disease.

There is a

great deal of

debate

whether food

has any direct

effect on the

symptoms of

rheumatic

disease.

“

”


When you have sugar (especially white, processed

sugar), your blood sugar levels increase and your

pancreas secretes insulin to try and balance out the

change in blood chemistry. Insulin also has an

inflammatory effect and is linked to increased cortisol -

one of your body's inflammatory agents. It's a simple

equation: more sugar leads to more inflammation.

Here are some simple tips that you can use to reduce

the amount of sugar in your diet:

1. Cut out the soda. If you are going to cut one thing out

of your diet and one thing only, make it soda. Soda is

packed full of sugar - in fact just one can of cola has

TEN teaspoons of sugar in it.

2. Learn what sugar is called. Sugar is seldom called

sugar on food packaging. It also goes be the name of

sucrose, fructose, dextrose and corn syrup. Don't worry

how they're different - they're all have a similar effect

as one another.

3. Switch your treat. Try switching from milk chocolate

to dark chocolate when you are after a treat. Not only

do you get a reduced-sugar sweet, you also get the

added anti-oxidant benefit of dark chocolate.

4. Don't get overwhelmed. Don't aim to eliminate ALL

the sugar in your diet. As I said before, sugar is

everywhere. When you're starting out, just aim to

eliminate the big sources of sugar like soda, candy and

It’s not about

being strict.

It’s all about

being sensible.

“

”


milk chocolate. You can move onto eliminating 'hidden'

sugar later on.

5. DON'T switch sugar for artificial sweeteners. That's

like jumping out of the frying pan and into the fire.

These chemical-laden sweeteners have a range of

negative health effects and should be avoided at all

costs.

Saturated and Trans Fat

Fat is an essential part of staying healthy and needs to

form a part of your balanced diet. The trick is to make

take your fat intake from the right sources. There are

two main types of dietary fat; omega-3 that comes from

some seafood and some plant oils and omega-6 fat that

is found in vegetable oils and animal fat. In a healthy

diet, you should try and balance your omega-6 to

omega-3 ratio at about 1:1. In your average western

diet, however, the ratio has become more like 20:1.

Not only are we consuming much too much omega-6

fat, we are also doing horrible things to it. Deep frying

oils, Crisco and margarine are all hydrogenated fat -

meaning that they have been super heated in order to

stabilise them and increase their shelf life. Did you

know that heart disease was almost non-existent prior

to the existence of publicly available hydrogenated fat?

Now heart disease is Western society's most wanted

killer.

You need fat in

a healthy

balanced diet.

The trick is

making sure it

is the right

type of fat.

“

”


Hydrogenated, saturated and trans fat exist in a high

percentage of processed foods. Food makers love trans

fat because it makes food look good, taste good and last

longer. Your body's inflammatory responses, however,

see these types of fat like a red rag to a bull. Saturated

and Trans fat increase inflammation, are closely linked

to the onset of obesity and are thought to increase

cholesterol levels, leading to heart disease.

Here are some simple tips that you can implement to

balance the good and bad fats from your diet:

1. Increase the amount of deep sea fatty fish and take a

high dose fish oil into your daily diet to increase your

intake of omega-3 'good' fat.

2. If you are after a convenient fast food meal, stay away

from your deep fried chicken joints and fried meat patty

burger houses. Choose a tastier, healthier option like a

sandwich bar or a lamb kebab.

3. Doughnuts are packed full of trans fat, sugar and salt.

Do yourself a favour and just say no.

4. Avoid deep frying anything at home. Opt for shallow

frying food (in moderation) in a good quality olive oil.

5. Choose healthier options from the Chinese take-out

menu. A lot of stir-fries, sweet and sour and fried rice

meals are prepared using a lot of fat. Choose fish,

vegetables or roasted dishes.

The better

your diet, the

better your

general health

will be.

“

”


As you can probably tell, I am not advocating a sin-free diet

here. You don't need to There are just a few foods that you

should try and avoid that significantly up the level of

inflammation in your body. While it takes a little while to get

used to life without sugar, it's well worth the effort.

With that said, the better your diet, the better your general

health will be. In addition to a healthy balanced diet low in fat

and sugar and high in fruit and vegetables and unprocessed

foods, there are several 'anti-inflammatory' diets on the market

that have a loyal following with many sufferers of rheumatic

diseases. While the idea that food triggers the symptoms of

illnesses like Still's Disease is still under debate by the medical

community, the anecdotal evidence supporting these diets is

widely positive.

Anti-inflammatory Diets

The Non-Nightshade Diet

There is a widely held theory that the acidity in a

certain group of vegetables triggers the body's

inflammatory mechanisms. These vegetables are found

in the nightshade family and include most famously

tomatoes, capsicums, potatoes and eggplants.

In the 1940's an uncontrolled study of 5000 patients

suffering with rheumatoid arthritis were asked to

eliminate nightshade related foods. After seven years,

almost 75% of the group reported that their pain and

Any diet must

be trialled for

several months

before you can

accurately

measure its

effectiveness.

“

”


disability had steadily declined since starting the diet.

While this diet is lacking scientific proof, the results

seem positive. You can't really get into too much

trouble with this diet, and may be worth trying. You

need to make sure that you are on the diet for several

months before you can accurately evaluate its

effectiveness.

The Dong Diet

This diet is based on a traditional diet from Chinese

medicine and is much more stringent that the non-

nightshade diet. People that undertake this diet can eat

all vegetables apart from tomatoes, and must avoid all

fruit, meat, dairy, herbs, alcohol as well as all

preservatives, sweeteners and preservatives.

In the early 80s a group of arthritis sufferers were asked

to go onto the Dong diet. While the results were

positive, there was no discernable difference between

patients that followed the Dong diet and those that ate a

healthy, balanced diet.

The most concerning this about the Dong diet is the

absence of fruit, which provide the body with anti-

oxidants that are proven to be beneficial in managing

the symptoms of illnesses like Still's Disease. I would

certainly recommend discussing this diet with your

doctor before eliminating such a wide range of foods

from your diet.

Some diets

have been

scientifically

trialled with

rheumatoid

arthritis

patients with

promising

results.

“

”


Metabolic Typing

Dr. Joseph Mercola developed the Metabolic Typing

diet with the idea that there is no perfect diet for

everybody. After you conduct the survey on the

www.mercola.com website, you are armed with a

better understanding of how your body is hard wired to

respond to food and you are labelled as either a 'Carb

Type', 'Protein Type' or 'Mixed Type". Depending on

your type, you will follow a diet that maximises your

body's response to certain foods.

For people with autoimmune diseases, it is more a diet

for ultimate wellbeing. With that said, this well

established and well researched and documented diet

has been trialled with rheumatoid arthritis sufferers

with positive results.

I hope you can start to see your management plan taking shape

by now. You need to pay equal attention to all of the sides of

the treatment: the therapeutic use of medication, the advice of

a qualified complimentary practitioner, a healthy diet and a

high performing supplementation regime to see real and

positive change in the intensity of your symptoms.

The final part to the jigsaw is tweaking your lifestyle to

accommodate for your illness. Now don't get me wrong - this

isn't about "giving in" to your illness - this is about changing

the way that you do a few simple things that will reward you

with profound positive change.

Use your

management

plan to see

real and

positive

change in the

intensity of

your

symptoms.

“

”


Part VI: Still's Disease Lifestyle

If you consider the recommendations in this found on this

report closely, you should be well on the way to taking control

of your Still's Disease. The final component of your

management plan is to make a few small - but important -

changes to your lifestyle.

We're not talking about major, life changing things here

either. There are just a few well considered choices that you

can make that will make living with still's disease much easier.

Exercising Your Body

The last thing that you will want to do when you are in the

middle of a flare up is to exercise. With that said, exercise

remains one of the most powerful preventative practises that

you can do to protect your joints and manage your symptoms.

Exercise stimulates the body's systems, removing toxins and

restoring the chemical balance of your body's inflammatory

systems. It also aids in the mobility of the major joints. You

know what happens if you let a door's hinges rust with disuse...

it becomes pretty darn difficult to open the door! The same is

true for your joints. If you don't test their full range of motion

regularly, they also become stiff, difficult and painful to move.

With all that said, I wouldn't recommend that you join the

wrestling squad or taking up high-impact aerobics. You need

The final

component is

to make small

– but

important –

changes to

your lifestyle.

“

”

“


to choose something that is low impact and relatively gentle.

That's not to say that you can't have a good workout, though!

Here's a rundown of my top Still's Disease exercises.

Qi Gong

Qi Gong is a lesser known, but well established

Traditional Chinese Medicinal discipline. It works by

cultivating chi, or life force in your body by the practise

of meditation and a series of slow, graceful movements.

Qi Gong is causing quite the stir in the orthodox

medical community over the last few years thanks to

some large trials on cancer patients that has yielded

some very promising results. People that regularly

practise Qi Gong report an increased feeling of peace

and wellbeing, as well as seeing relief in a wide range of

ailments, including rheumatoid conditions. The best

thing about Qi Gong is that it can be practised at home

in as little as 20 minutes a day. I have personally seen a

lot of benefit by using Qi Gong as part of the

management plan of my own Still's Disease symptoms. I

find the simple exercises fantastic therapy on my joints

and after practising, I am always instilled with a deep

feeling of peace and contentment - even on my bad

days.

You may want

to avoid the

wrestling

squad when

choosing a

suitable

exercise for

yourself!

”

“


Walking

Yep, the thing that you've been doing since you were

twelve months old still serves as one of the most

popular and most effective exercises on the face of the

planet. Set a brisk pace - just enough to get you

breathing hard - and keep it up for at least 30 minutes.

Aim to get out for a walk at least four times a week.

Like anything, it is important that you have the right

equipment. Invest in a good pair of walking shoes and

you will enjoy walking more and it will be much easier

on your body. Many exercise shoe stores have special

equipment that can analyse your footprint. With this

information, a good store clerk will be able to

recommend you the best pair of shoes for you. Make

sure that you tell them that you need extra support for

your knees, hips and ankles.

When you walk, don't make it a chore. Load up your

iPod with music or podcasts. Go to the pound and adopt

a dog. Walk with your partner or a friend. Buy a

pedometer for $40 and challenge yourself to beat your

record.

Yoga

Yoga is a very effective method of stretching your

entire body, strengtheing your core and harmonising

mind, body and spirit. There are several different

schools of yoga that are practised in the west. The most

common type of Yoga, and the one most suitable for

sufferers of Still's Disease is Hatha yoga. Hatha Yoga

Always discuss

your condition

with your

instructor

prior to a

session.

”

“


classes will take you through a series of asanas (poses)

where form and breath are very important. Most classes

are suitable for beginners, and a good instructor will

show you easier alternatives to the more difficult

postures. It should be noted that the more vigorous

forms like Astanga and Bikram Yoga should be avoided

- they can be pretty tough on your joints.

When practising yoga, always talk to the instructor

before the class and discuss your condition with them.

There are certain postures that should be avoided,

especially when strain is placed on the wrists, knees or

neck. They will give you alternative postures to practise

that reduce the pressure on your vulnerable joints.

There are dozens of yoga classes in your local area that

will be suitable. I can personally recommend the Yoga

in Daily Life school that holds classes in most major

cities.

Swimming

Swimming is the ultimate non-contact exercise. If

walking is uncomfortable for you, definitely consider

swimming as an alternative exercise. Many people find

cool water soothing to their joints and the water's

buoyancy allows you to move through a greater range

of motion.

While you're down at the pool, why not check out and

see if they hold aqua-aerobics as well? Especially if you

used to participate in more vigorous workouts, this

The most

important

thing is to get

to know your

limits.

“

”


could be the thing for you - believe me, it's a heck of a

workout.

The most important thing to keep in mind when exercising is

to get to know your limits. Sure, you could probably go down

to the gym and hammer through a weights session or a Spin

class and get through it okay. But is that worth spending the

next three or four days laid up in bed because you over did it?

Aim for gentle, sustainable exercise that you can practise on a

regular basis. Just remember to listen to your own body - it has

a very good way of telling you to slow down!

Exercising Your Mind

Exercising your mind is not really about making you smarter,

quicker or wittier (although exercising your mind often has

these positive side-efffects!). This is about your coping

strategy. It is very difficult when you suffer from a chronic

disease. Your body and mind are almost constantly under

stress of some description, and that stress can spill over and

flow into your family life, your relationships and your work.

I cannot emphasise enough the importance of having a

strategy to manage your stress threshold. There are some very

effective techniques that you can implement that will reward

Just remember

to listen to

your own body

- it has a very

good way of

telling you to

slow down

“

”


you in truckloads as part of your Still's Disease management

plan.

Meditation

We have what is known as a 'stress threshold'. Have

you ever noticed how something is very stressful to

you, but it doesn't bother someone else at all? Have you

ever looked at those people with amazement - nothing

ever seems to phase them? Wouldn’t it be great to be

able to increase your stress threshold so that the "little

stuff" just doesn't sweat you at all?

Meditation has this incredible side effect. With

dedicated practise, you actually increase your stress

threshold. The effect for you and the management of

your illness will be profound: you will be given skills to

actually live with your illness and constructively

process the stress of having a chronic illness.

I cannot more strongly recommend the excellent

meditation product offered by Centrepointe. It takes all

of the hard work out of meditation (would you believe

that sitting quietly is actually really challenging to do?).

What this technology does is to coax your brain waves

down to the lowest reaches of the delta state - this is

where you go in deep, peaceful sleep - and where the

therapeutic effect of meditation occurs.

This is a life changing product, and I mean that with all

sincerity. I strongly encourage you to take a moment

You will be

given skills to

actually live

with your

illness and

constructively

process the

stress of

having a

chronic illness.

”

“


and check out the Centrepointe website for some more

information.

Planning your day

By now, you should have the following things working for you

in your management plan:

1. A carefully considered and responsible medication

regime

2. The practise of an alternative therapy to address your

illness holistically

3. Effective high-dose fish oil and multi-vitamin

supplementation

4. A diet that controls the inflammation in your diet.

5. A light and enjoyable exercise routine

6. The dedicated practise of some sort of meditation

With all of these things working for you, you will be well on

the way to taking control of Still's Disease. The final piece of

the puzzle is to plan your day so that you can avoid flare ups

and stay in the optimum of health.

The key to remember here is that you can do most things - just

don't try and pack them into one day! If you know that tonight

is the night that you are going to the U2 concert and you're

going to be out until midnight, don't also make that the day

The last thing

that you want

to be doing is

spending all of

your energy

focussing on

your illness -

you need to be

spending that

energy

focussing on

your life.

“

”


that you go for the two hour walk in the country side. If you

are going for a long weekend mini-break, make the preceding

week as stress-free as possible. You would also be best to pay

special notice to your diet through this week - that way your

body is in peak condition to enjoy your holiday.

There's not really any secret to planning your day. Of course

the last thing that you want to be doing is spending all of your

energy focussing on your illness - you need to be spending that

energy focussing on your life.


Making it Happen.

Now there comes the real challenge: making these changes

happen for you. You do have a choice here... you can stick

your head in the sand, ignore your illness and battle with Still's

Disease for years, or you can choose to make some carefully

considered changes, and take control of Still's Disease.

If you want to hear about more great tips and tricks about

living with your illness - as well as receiving comprehensive

reports on some of the products and strategies raised on this

website, please make sure that you're part of the Taking

Control Of Stills Disease mailing list.

I wish you all the health and happiness in the world.

Good luck, my friend.

Choose to

make some

carefully

considered

changes in

your life, and

take control of

Still's Disease.

“

”

Documents

Taking Charge of Still's Disease