National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session

LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, MARIE KIRWAN & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS TALK GIVEN BY LIVINGSTONE CHISHIMBA CLINICAL FELLOW AT THE NATIONAL ASPERGILLOSIS CENTRE NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Support Meeting for Aspergillosis Patients Fungal Research Trust

Programme
1pm Introduction
1:05 Livingstone Q & A
1:45 (More) Questions
2:00 Tea & Coffee
2:15 Discussions:
Lewis Fraser runs 100miles around Everest, climbs 12 000 feet
Carers
EPP
Did we win?
Any Other Business
3:00 Close

Patient meeting -Q &A Dr Livingstone Chishimba University Hospital of South Manchester

Q4
Does climate make any difference?

CAUSES OF ASPERGILLOUS LUNG DISEASE

Q5
Female going through menopause does that effect Aspergillus?
I ask this as I am 48 years and pre-menopausal and when i have a run of hot flushes my breathing is a lot worse....and I have to put my steroids up to help...

Fungi are in the air

Exposure in the garden

The tsunami and Sakseniae vasiformis

Source of Aspergillus

Hospital demolition Hansen et al. JHI 2008; 70: 259-264.

Heavy excavation! Nihtinen et al. 2007 BMT

ASPERGILLOSIS

Q16
From an epidemiological perspective, do you see an increase in the number of fungal related disease - both typical and invasive and do you think that it is related to global warming?

EU caseload of aspergillosis Immune dysfunction Frequency of aspergillosis Immune hyperactivity Frequency of aspergillosis Subacute Invasive Aspergilloma Chronic cavitary Chronic fibrosing Locally invasive . After Casadevall & Pirofski, Infect Immun 1999;67:3703 30,000 - 70,000 cases ~7,500 cases ABPA Severe asthma with fungal sensitisation Allergic sinusitis Acute Invasive

Is Invassive Aspergillosis increasing ?
Yes but varies with regions, age and underlying conditions
Frankfurt German
The prevalence rose from 2.2% (1978–82) and 3.2% (1983–87) to 5.1% .
mainly due to a significant increase in Aspergillus infections
The highest infection rates were found in aplastic syndromes (68%), followed by AML (25%) and AIDS (19%).

Incidence of Cryptococcus gattii infection British Columbia, Canada Source: BC Centre for Disease Control 2007 Cases per 100,000 population Average incidence 1999–2006: Vancouver Island: 2.8 cases per 100,000 Mainland: 0.65 cases per 100,000

Likely ABPA caseload 1%+ of adult asthmatics attending clinic have ABPA In UK - ~5,000,000 with asthma, >3M adults In Europe - >17,000,000 adults with asthma ~ 150,000 adults with ABPA in Europe ~12% of those with CF have ABPA EU CF population ~150,000 = ~ 17,500 patients

Key issues
Air as a source of human infection
Water as a source of human infection
Other environmental sources of human infection

INVESTIGATIONS AND DIAGNOSIS

Q9
From the specialist level to the local consultant level (Internist in the US), how is the information disseminated and monitored? Who is responsible to identify changes - both good or bad? How does the "team" work operationally as well as clinically.

Q6
In diagnosing Aspergillus or related fungal disease (i.e. mucor),
what medical tests are typically ordered (i.e. specific type(s) of blood work, CT scans, etc.)? Are they part of a standardized protocol?

Q7
In taking a patent's history to ascertain the cause(s) is there a standardized format/protocol that clinicians follow (i.e. identify chronic diseases, cancer patient, allergy to molds, etc)?

Q8
After diagnosis and treatment has begun, is there a standard protocol of tests to monitor the progression of the disease and markers to trigger additional testing/treatment?

Q10

Is there regular fungal disease related education for clinicians on a regular basis? If so, what are the topics? Is this education started in medical school? Is it a requirement of the medical school curriculum?

Q12
When a patient comes to you for a new or recurrent appointment, what information can they provide that will make your job easier?

Q11
What things can a patient - or patients' family - look for to see a worsening change in condition.
Specifically related to those patients that have an underlying medical condition as well as aspergillus or other fungal related disease.

A.11
Worsening condition: depend on type:
Acute:
↑ SOB, cough, fever,
Coughing blood
lethargy
subacute.
Lack of energy
Recurrent chest infections, breathlessness.
Appetite
Wt loss

TREATMENT

Q15
What is your opinion regarding treatment of mold allergies for those patients that have history of fungal or invasive fungal disease? Does invasive fungal disease differ in approach?

Q20

Other than tablets or medication or surgery can aspergillosis be lasered or frozen?

Q21
Can it be killed by radiation?

side effects of medication

Q3

Are all makes of itraconazole the same?

Q3. Itraconazole
capsules or a solution (liquid) to take by mouth.
Absorbed in different ways. Take the brand prescribed.
Itraconazole capsules are usually taken with a full meal.
Itraconazole solution is usually taken on an empty stomach.
Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand.
Take itraconazole exactly as directed.
Do not take more or less of it or take it more often than prescribed by your doctor.

itraconazole
Your doctor may tell you to take itraconazole capsules with a cola soft drink if you have certain medical conditions or are taking any of the following medications:
cimetidine (Tagamet);
proton-pump inhibitors such as esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec), pantoprazole (Protonix), and rabeprazole (AcipHex); or ranitidine (Zantac). Follow these directions carefully.

Q27
Since I've been on itraconazole, I've developed a tremor in both hands.
Has anyone else experienced this?

A27. What side effects can itraconazole cause?
diarrhea or loose stools
constipation
Gas
Tremors (1.65% patients)
stomach pain
heartburn
sore or bleeding gums
sores in or around the mouth
headache
dizziness
sweating
muscle pain
decreased sexual desire or ability
nervousness
depression
runny nose and other cold symptoms
unusual dreams
Most are short lived and dissappear

Thank you for your attention

Heavy excavation! Nihtinen et al. 2007 BMT

Himalayan Challenge

Himalayan Challenge The Himalayan 100 Mile Stage Race has been describe as the 'most beautiful' and the 'toughest' marathon in the world. The Runners Times magazine ran an article on the marathon. Their opening line was: "There are lots of good reasons not to do the Himalayan 100 Mile Stage Race. The first three are that it’s really, really, really hard."

The Location

The route
Day 1 - October 18, 2011 (Tuesday) SANDAKPHU 24 miles Day 2 - October 19, 2011 (Wednesday) SANDAKPHU 20 miles
Day 3 - October 20, 2011 (Thursday) RIMBIK 26.4 miles
Day 4 - October 21, 2011 (Friday) PALMAJUA 13 miles
Day 5- October 22, 2011 (Saturday) MANEYBHANJANG MIRIK 17 miles

Donations so far www.everestendurance.co.uk

Thank You
Massive Thank You to Lewis & Aaron
from the Fungal Research Trust

Discussion
What do you want to hear about in the next 12 months?
Vitamin D – Moved to New Year - Livingstone
Fatigue & muscle pain – Have had speaker suggested
Cardiothoracic surgery
Help at home /everyday life (Used to be FALLS service at Manchester) – have moved
Weight loss – Xmas ‘Party’ Debbie/Marie
Cleaning & freshening products – breathing problems
Tips for travel insurance
Carers – coping, impact on their lives - see website
Anxiety/panic attacks – psychological methods to improve
Practical help with preparing for end of life
Vaccines – why we use them (Georgina – March?)

Manchester Carers

http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

Expert Patients Programme
Will try to get a ‘Patients Champion’ to talk to us on the benefits of Expert Patients Programme
Originates in 1990, Stanford University USA
Bad title/name? Nothing to do with being an expert on your condition & getting stroppy with your consultant (!)
It is about better self management , becoming aware of all the services the NHS offers you. If we want our NHS to give us what we need, we have to take a more active role in telling them what that is.

Expert Patient Programme
The aim is that expert patients should:
Feel confident and in control of their lives.
Aim to manage their condition and its treatment in partnership with healthcare professionals.
Communicate effectively with professionals and be willing to share responsibility for treatment
Be realistic about the impact of their disease on themselves and their family; and
Use their skills and knowledge to lead full lives.

EPP benefits proven in the UK
Research Confirms Expert Patients Programme Benefits
In a randomised trial carried out by the National Primary Care Research and Development Centre, researchers found:
Increases in people's confidence to manage their condition
Gains in energy
Improvements in quality of life
High satisfaction with the course
Improvements in psychological wellbeing
Improvements in partnerships with doctors

AOB
New patients information leaflets (nearly) ready to go
Available NOW
Aspergillus bronchitis – coming soon
Funguide Cook book – keep sending in recipes
Donate by mobile phone – now in operation, automatically gift aided
Send ASPR44 2 to 70070 to donate £2,
can also donate £3, 4, 5 or 10 by substituting the 2
Discussed emergency out of hours number – we have insufficient staffing for this at the moment but

Nursing Times Award – did we win???

Thank You
“ The best chance we have of beating this illness is to work together”
Living with it, Working with it, Treating it
Fungal Research Trust

Q24
When I started taking an antifungal I felt worse than I did before for a while, then I improved. I have been told that this is because when I first take the antifungal it kills a lot of fungus and this initial ‘die-off’ causes me to feel worse – is this true?

Q1
Is it really necessary to stay on Prednisone so long? I'm wondering if a quick 2-3 week blast is adequate or does it really need to be months at a time?
Right now I feel fine yet I theoretically am going to be taking Prednisone for another 2-3 months. I do know that I need to taper off regardless of when I stop taking it to avoid adrenal issues.

Q2
Everything I read talks about all the long term side effects of taking Prednisone but I don't ever see anything that defines what 'long term' is? Is that referring to taking a maintenance dose forever? Or is having 1-2 bouts with ABPA per year that need to be treated with Prednisone considered long term?

Q25
I have been diagnosed with ABPA.
Is it really necessary to stay on Prednisone so long? I'm wondering if a quick 2-3 week blast is adequate or does it really need to be months at a time? Right now I feel fine yet I theoretically am going to be taking Prednisone for another 2-3 months. I do know that I need to taper off regardless of when I stop taking it to avoid adrenal issues.
Everything I read talks about all the long term side effects of taking Prednisone but I don't ever see anything that defines what 'long term' is? Is that referring to taking a maintenance dose forever? Or is having 1-2 bouts with ABPA per year that need to be treated with Prednisone considered long term?

Q28
I am concerned that my adrenal glands may not recover after several years taking corticosteroids.
I have terrible morning fatigue which I understand might be caused by this? What can I do?

Adrenal insufficiency.
symptoms
Extremely low adrenal activity is known as Addison’s disease. It is characterized by
weakness,
fatigue,
low blood pressure,
changes in skin color,
dehydration,
anorexia,
nausea,
decreased cold tolerance and dizziness.
What can you do?
Need to see your doctor
Confirm diagnosis
Drink enough fluids
Some medications eg BP meds may be discontinued by your doctor
Changes to some meds eg seretide may be done.
Keep warm.
Avoid standing for long times
Take replacements as described.
See a specialist endocrinologist

Q24
Bloating –
my medication does not help as it gives me awful headaches ?
What causes it and how can we prevent it/ease the problem? Is it caused by my bowels not processing food quickly/constipation?

A24.Bloating
results from excess water retention in the subcutaneous tissues of the body. This fluid can collect in a variety of areas – such as the feet, legs, thighs, and ankles – but is typically most pronounced in the abdominal region.
The fluid may also collect in the bowels causing indigestion.
Some medicines, such as prednisone or itraconazole can cause fluid to accumulate in the subcutaneous tissues of the abdomen.

headaches
Can occur with any medication though more common with some.

Q29
What is the effect of alcohol on haemoptysis – ie 1 glass of wine?

PATIENT-DOCTOR RELATIONSHIP

Q13
What is your philosophy in regards to partnering with your patient and how much of a voice does your patient have in his/her medical care?

Q26
Does anyone have any recommendations on how to handle a doctor whose advice I don't agree with?

National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session

by Graham Atherton on Nov 04, 2011

Accessibility

Categories

Tags

Upload Details

Usage Rights

Statistics

National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session — Webinar Transcript