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Taking Charge of Still’s

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

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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.

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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.
Still’s Disease
Adult Onset Still's Disease falls into a category of illness known is not a paint-
as rheumatic disease. Simply put, AOSD is a disease of
by-numbers
inflammation. As it progresses through the body it causes the
illness.


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.

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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
There
similar in sensation and intensity to an average winter are two phases
cold. From this point, almost all patients will experience of the illness:
several symptoms including severe joint and muscle the short term
pain, rashes and a high fever.
acute stage
Joint Pain
Inflammation and pain during the acute phase may
and the long
strike any joint in the body, but is most common in the term chronic
knees, ankles and wrists. The pain is often extreme: For phase.


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).

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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 The acute phase
like you don't need to know how a car works in order is categorised
to drive to work, it isn't critical to fully comprehend the by:
science behind the inflammation process.
- Sore throat
With auto-immune diseases like Still’s Disease, the
- Rash
body misidentifies parts of itself as a foreign invader
- Joint pain
and attacks itself, causing pain and inflammation. For - Fever
example, with Still’s Disease, the body labels the - Internal
synovium (this is the fluid that lubricates your joints) as swelling


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.

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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.

Still’s sufferers
Fever
Sufferers of Adult Onset Still's Disease almost always
spike with fevers
experience a fever that often spikes to over 40 degrees over 40 degrees
centigrade. centigrade –
that’s 104
The fever waxes and wanes throughout the day, and is
usually the highest in the late afternoon or evening. In
degrees
the morning and throughout the day, a normal (36-37 Fahrenheit.


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.

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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 It is of the
normally subside during this phase of the illness. Joint pain due utmost
to the rheumatic component of the disease is often present importance that
throughout the chronic phase of the illness. Although not you have a
usually as severe as the initial onset, chronic inflammation of carefully
the joints often leads to pain, discomfort and disability.
considered plan
It is of the utmost importance that you have a carefully to manage the
considered plan to manage the chronic phase of the illness. I chronic phase of
understand that you may be reluctant to start a long term the illness.


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

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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
Acute flare ups
family and support network of the person living with Still's
Disease.
occur with
most Still’s
Flare Ups sufferers.
Adult Onset Still's Disease seems to be a cyclical illness, and
acute episodes, or "flare ups" occur with most sufferers. These
These
episodes can be as severe as the initial onset of the illness, but episodes can
are usually shorter in duration. be as severe as
the initial
onset.


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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 This illness
will fit into one of four groups: usually
1. A small percentage of patients experience one acute becomes
episode and then go into complete remission.
harder to deal
2. Roughly a third (although this may be an inflated with – not
figure) of sufferers move into complete remission after a
ten year time frame.
easier.
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

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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.
There is –
The silver lining that shines out from the black cloud of Adult
most certainly
Onset Still's Disease is that there is -- most certainly -- hope.
Yes, you will probably need to make changes to your lifestyle,
– hope.


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.

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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
Your specialist, as the name implies, has a high level of
expertise in dealing with inflammatory diseases like Adult
has the
Onset Still's Disease. In most cases your specialist will be a expertise to
rheumatologist, although you may also be referred to an prescribe a
immunologist or a general physician.
treatment
Rheumatologists deal exclusively with inflammatory and auto- regime that
immune diseases like rheumatoid arthritis, lupus and ulcerative will help you
colitis, and have the necessary skills and expertise to prescribe
manage the
you a treatment regime that will help you manage the
symptoms of Adult Onset Still's Disease.
symptoms.
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.

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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
Of critical
required), physiotherapists and a pathology technician who importance is
will take your blood when tests are required. your
Of critical importance is your relationship with your medical relationship
team. It is very important that you not only trust your medical with your
team, but that you know how to effectively communicate with medical team


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

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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 Still’s disease
influenza, malaria, lupus and rheumatoid arthritis before the is often mis-
correct condition is identified.
diagnosed at
The speed in which your doctor diagnosed your illness is not a the onset and
comment on his or her competence - it is more due to the
is usually
elusiveness of Adult Onset Still's Disease itself. If we were
going to be completely accurate, AOSD is not so much a
diagnosed by
disease as it is a collection of symptoms. ruling other
There is no definitive test that identifies Adult Onset Still's
illnesses out
Disease. Usually it is diagnosed by ruling out other diseases first.


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.

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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 Diagnosis can
between 1-15mm/hour. When AOSD is in its acute
be drawn out,
phase, the ESR rate often exceeds 50mm/hour.
depending on
CRP
The C-Reactive Protein rate is another inflammation
your doctor’s
marker that measures the evidence of a special protein experience
that is secreted by the liver. Adult Onset Still's Disease with Still’s
sufferers have been known to exceed 150 units -
Disease.


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.

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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.

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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
The drugs used
you fully understand the medication that you have been
to treat Still’s
prescribed.
Disease are
NSAIDs - The Front Line in Treatment often fairly
Non-steroidal anti inflammatory medication - or NSAIDs - is heavy-duty.


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

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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- The most
intestinal problems. NSAIDs do not only target the processes
important thing
that trigger inflammation, they also decrease the body's ability
to produce the protective lining of the stomach. Ulcers, gastric
is that you
bleeding, nausea and diarrhoea are all side effects of NSAID understand
use. your
If you do suffer nausea or stomach upsets while using NSAIDs,
medication.


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.

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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
Steroids may
profound effect on the body's inflammatory response.
Synthetic corticosteroids such as prednisone and prednisolone
seem like
are used for a variety of applications from asthma to migraines. miracle drugs,
They are particularly effective in the treatment of auto- but above all
immune diseases.
else they need
People that are crippled in the acute phase of Adult Onset to be
Still's Disease are often amazed to see their symptoms be
respected.


"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

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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 DMARDs
sparingly as possible - and if possible - avoided as part of a long
slow the
term treatment plan.
progression of
Corticosteroids may seem like miracle drugs, but above all else, the illness and
they need to be respected.
minimise its
symptoms.


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

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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, DMARDs
mouth sores and diarrhoea. These side effects are
that are
normally controlled by adjusting the dosage. In rare
cases, Sulfasalazyne can cause fever and an intense
effective in
itching rash. These symptoms disappear once the treating
medication is stopped. rheumatic
illnesses are
Methotrexate (MTX) sometimes
Methotrexate (MTX) is the next most commonly
discovered
prescribed DMARD in the treatment of Adult Onset
Still's Disease.
quite by
accident.


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.

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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
Methotrexate
hydroxychloroquine are also used in the treatment of is often used in
rheumatic conditions. While they have a mild conjunction
immunosuppressant function on their own, they are
with other
often used to increase the effectiveness of Methotrexate.
medicines
The biggest benefit of combining chloroquine (most which often
commonly prescribed under the brand name Plaquenil) increases the
with other DMARDs is that they are steroid sparing - effectiveness of
allowing you to reduce the dosage of the more powerful
the drug.


- 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

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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 Some
drugs are around $18,000 per year.
Still’s Disease
Before prescribing you a TNF inhibitor, your doctor
medications can
will conduct a series of blood tests to make sure that
you do not carry Lupus, Tuberculosis or other be extremely
infections.
expensive.


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

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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. Although
The next part of this report looks at alternative therapies that medication is an
have been scientifically proven to assist in the management of
illnesses like Adult Onset Still's Disease.
important and
usually
necessary part
of your
management
plan, it should
not be your only
consideration.


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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 Alternative
are now increasingly considered as viable compliments to
therapies are
orthodox medicine.
now seen as a
This page is not meant to be a comprehensive guide to viable
alternative therapies - that could take up a whole report by
compliment to
itself! This is intended to be an introduction to some of the
more established therapies that have established credibility in
orthodox
treating illnesses like Adult Onset Still's Disease. medicine.

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

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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 Acupuncture
symprtoms of AOSD. may be an
If you decide to include acupuncture as part of your effective tool
management plan, you can expect your practitioner to perform in assisting
a diagnosis by analyzing your pulse, the surface of your tongue
your general
and by interview. A session normally lasts around an hour, and
well-being.
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.

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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

Homeopathy is
well
established,
but its
effectiveness in
the homeopathic paradigm.
treating
Homeopathy is well established, particularly in Europe. Its rheumatic
effectiveness in treating Adult Onset Still's Disease and other
conditions is
rheumatic conditions is still debated. It is considered as a safe
theray and does not have significant side effects or
still debated.


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.

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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. When you
These therapies are generally considered safe when practised
only have a
by an experienced practitioner - with one major exception. hammer, every
When you suffer from Adult Onset Still's Disease, there is a problem looks
vertebrae in the neck that is often specifically weakened.
like a nail.


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.

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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 The secret of
of the disease. lasting health
The tendency of many health practitioners (and this includes lies in a
medical doctors!) is that the often believe that their method is the balanced
only method worth trying. Have you ever heard the saying:
"When you only have a hammer, every problem looks like a
approach.


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.

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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.

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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
You do not
diagnosed with Adult Onset Still's Disease it is tempting to buy need to spend
up hundreds of dollars worth of supplements. hundreds of
You're a smart person. You know that you don't need to walk dollars on
out of your health food store with ten shopping bags crammed supplements to
full of pills, powders and potions. This section looks at the two
manage your
key supplements that you should be taking every day - Fish oil
and a quality whole food multi vitamin.
illness.

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

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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 On a
and scientifically supported.
scale of one to
You can obtain omega-3 from several sources, including some ten for anti-
plant oils, krill (the tiny prawn-like creatures that whales eat),
inflammatory
mussels and other shellfish and by eating deep sea fish. By far,
effectiveness,
the easiest to obtain and most cost effective omega-3 source is
found in medical-grade fish oil.
fish oil comes
in as a twelve.


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

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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 You are well
possibly taste and comes highly recommended.
served by
taking out a
Multi-Vitamins - Getting the most from your food. little added
Your body has been designed over thousands of years to
insurance in
extract all of the necessary minerals and vitamins that it the form of a
requires from a balanced, healthy diet. multi-vitamin.


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

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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 For less than
been scientifically proven to reduce stress - certainly something
$50 a month,
that you will be struggling with as an AOSD sufferer.
you will see
Whilst there are a host of multi-vitamins on the market, I use and
recommend the Whole Food Multi Vitamin from
real, lasting
www.mercola.com. It is one of the few multi-vitamins on the benefits.


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

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that you are on. I encourage you to research other supplements
that may offer you assistance

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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 There is a
today. great deal of
There is a great deal of debate around "eating for arthritis" and debate
whether food has any direct effect on the symptoms of whether food
rheumatic disease. Whether or not the research has been done,
has any direct
I speak from experience when I say what goes in your mouth
effect on the
significantly affects the symptoms of Still's Disease, as well
impacting on your general wellbeing.
symptoms of
rheumatic
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-
disease.


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.

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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: It’s not about
being strict.
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
It’s all about
packed full of sugar - in fact just one can of cola has being sensible.


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

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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. You need fat in
Saturated and Trans Fat a healthy
Fat is an essential part of staying healthy and needs to
balanced diet.
form a part of your balanced diet. The trick is to make
take your fat intake from the right sources. There are
The trick is
two main types of dietary fat; omega-3 that comes from making sure it
some seafood and some plant oils and omega-6 fat that is the right
is found in vegetable oils and animal fat. In a healthy
type of fat.


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.

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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


The better
high dose fish oil into your daily diet to increase your
intake of omega-3 'good' fat.
your diet, the
better your
2. If you are after a convenient fast food meal, stay away
from your deep fried chicken joints and fried meat patty
general health
burger houses. Choose a tastier, healthier option like a will be.


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.

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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 Any diet must
diseases. While the idea that food triggers the symptoms of
be trialled for
illnesses like Still's Disease is still under debate by the medical
several months
community, the anecdotal evidence supporting these diets is
widely positive.
before you can
accurately
measure its
Anti-inflammatory Diets effectiveness.


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

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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
Some diets
fruit, meat, dairy, herbs, alcohol as well as all have been
preservatives, sweeteners and preservatives. scientifically
In the early 80s a group of arthritis sufferers were asked
trialled with
to go onto the Dong diet. While the results were rheumatoid
positive, there was no discernable difference between arthritis
patients that followed the Dong diet and those that ate a
patients with
healthy, balanced diet.
promising
The most concerning this about the Dong diet is the results.


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.

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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
Use your
respond to food and you are labelled as either a 'Carb
Type', 'Protein Type' or 'Mixed Type". Depending on
management
your type, you will follow a diet that maximises your plan to see
body's response to certain foods. real and
For people with autoimmune diseases, it is more a diet positive
for ultimate wellbeing. With that said, this well change in the
established and well researched and documented diet intensity of
has been trialled with rheumatoid arthritis sufferers
your
with positive results.
symptoms.

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.

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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 final
component is
to make small
– but
important –
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
changes to
remains one of the most powerful preventative practises that your lifestyle.


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

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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
You may want
some large trials on cancer patients that has yielded
some very promising results. People that regularly
to avoid the
practise Qi Gong report an increased feeling of peace wrestling
and wellbeing, as well as seeing relief in a wide range of squad when
ailments, including rheumatoid conditions. The best choosing a
thing about Qi Gong is that it can be practised at home
suitable
in as little as 20 minutes a day. I have personally seen a
lot of benefit by using Qi Gong as part of the
exercise for
management plan of my own Still's Disease symptoms. I yourself!


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.

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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 Always discuss
sure that you tell them that you need extra support for
your condition
your knees, hips and ankles.
with your
When you walk, don't make it a chore. Load up your
instructor
iPod with music or podcasts. Go to the pound and adopt
prior to a
a dog. Walk with your partner or a friend. Buy a
pedometer for $40 and challenge yourself to beat your session.


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

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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
“ The most
important
thing is to get
to know your
limits.
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

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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?
Just remember
Aim for gentle, sustainable exercise that you can practise on a
to listen to
regular basis. Just remember to listen to your own body - it has
a very good way of telling you to slow down!
your own body
- it has a very
good way of
Exercising Your Mind
telling you to
Exercising your mind is not really about making you smarter,
slow down


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

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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
You will be
able to increase your stress threshold so that the "little given skills to
stuff" just doesn't sweat you at all? actually live
Meditation has this incredible side effect. With
with your
dedicated practise, you actually increase your stress illness and
threshold. The effect for you and the management of constructively
your illness will be profound: you will be given skills to
process the
actually live with your illness and constructively
process the stress of having a chronic illness.
stress of
having a
I cannot more strongly recommend the excellent
chronic illness.
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

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and check out the Centrepointe website for some more
information.

The last thing


Planning your day
that you want
By now, you should have the following things working for you
in your management plan:
to be doing is

1. A carefully considered and responsible medication


spending all of
regime your energy
2. The practise of an alternative therapy to address your focussing on
illness holistically
your illness -
3. Effective high-dose fish oil and multi-vitamin
supplementation you need to be
4. A diet that controls the inflammation in your diet. spending that
5. A light and enjoyable exercise routine energy
6. The dedicated practise of some sort of meditation focussing on
With all of these things working for you, you will be well on your life.


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

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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.

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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 Choose to
considered changes, and take control of Still's Disease.
make some
If you want to hear about more great tips and tricks about
living with your illness - as well as receiving comprehensive
carefully
reports on some of the products and strategies raised on this considered
website, please make sure that you're part of the Taking
Control Of Stills Disease mailing list. changes in
I wish you all the health and happiness in the world. your life, and
take control of
Good luck, my friend.
Still's Disease.


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