I have been getting some questions about Swine Flu from patients with APS. This article was written by a patient from the Hughes Syndrom foundation www.hughes-syndrome.org Please know that Antiphospholipid Syndrome is called Hughes Syndrome in the UK. I am sure you will find it of interest and assistance. If you are concerned you have Swine Flu. Please contact your GP or local hospital, call first and explain your concerns. Print this out and take it with you.
Hello to all our Hughes Support members,
I have been watching this swine flu pandemic quite closely - having an interest in the study of illnesses and how they spread (my MA is in Health Services Research) so I will tell you what I have learned. However I am NOT an expert and obviously all advice should be personalised to your own personal case via your health professional. I am speaking mainly from an academic viewpoint and not a practical one!!
Firstly it is the influenza virus designated Pandemic/H1N1/09 but the press have encouraged most of us to name it 'swine flu'. This is not strictly correct as it is in fact a mixture of swine, avian and human influenzas.
The reason it is a pandemic is that is a completely new virus. This has never before been met by humans and so absolutely no one has complete immunity to this novel virus. It is this that makes it a pandemic - it means the whole world is susceptible to it at the same time. This is why we have epidemic levels of flu being recorded in London and Birmingham now and yet we are in the middle of our summer, not a traditional time for a 'flu epidemic.
The seasonal flu vaccinations we have every year are to protect us against seasonal flu. These vaccinations only last for about a year and that is why you have to have a new one each year. In addition the dominant strain of flu varies each year, although all the seasonal flu's have been around on and off for years and so the population as a whole has some immunity to them. Our seasonal flu vaccines will NOT protect us against swine flu as the swine flu virus is a completely new virus.
The scientists are as I write this working desperately hard to create a swine flu vaccine. They already have inactivated the virus and now are reproducing it - either in cells or in eggs. Then they have to test it through clinical trials and then they will start a vaccination programme. It is likely to commence in late August. There is likely to be two vaccines needed 3 weeks apart - as we will need more vaccine than usual as this is completely new virus and we have no immunity in our blood to it at all.
Until the vaccination all we can do is hope we don't catch it. If we do, treat ourselves as we would normally with influenza - which is more serious than a cold and makes you feel generally rough for a few days with a temperature and cough. If you are in a high risk group - one that usually is offered the seasonal flu vaccine you should immediately CALL your GP. You must on no account go to A&E or a doctors surgery if you have swine flu. Having said this (!) obviously if you are EXTREMELY unwell then you must go to A&E. But be sensible, it is to try and stop the disease spreading to vulnerable people - such as those sick and in hospital recovering from other illnesses and operations. If it gets into the hospitals it could be very troublesome and probably dangerous for the patients.
If you are in a high risk group you SHOULD be immediately offered Tami flu if you fulfil the criteria - temperature greater than 38 degrees, cough, cold, aching limbs, vomiting or diarrhoea etc . . . . You must start taking the Tami flu as soon as you have received it - which will be by getting a 'flu friend' - a well friend to go and get the voucher from the doctors and then take it to the Tami flu collection point - which is usually a local pharmacy. For best response Tami flu should be taken within the first 48 hours of symptoms of 'flu.
If you get any worrying symptoms such as breathlessness, confusion, dehydration etc, contact your doctor urgently or if VERY SICK go to A&E but try to get a well person to go in first and warn them you have probable swine flu and you are very sick. They should have a separate room for these cases and a 'swine flu doctor'.
If you get better and then appear to get worse again, you must contact your GP as it is likely you will have a secondary bacterial infection. This is when you would need antibiotics, and the UK have ordered extra antibiotics for this scenario.
Pandemics always follow a certain pattern. The worst having been 1918-19. This carried a mortality rate of over 2%. However, this was at a time when there were no antibiotics, critical and intensive care was not so advanced and there was no Tami flu. In addition this is the first pandemic in history (wow!) to hopefully be producing a vaccine. All these factors should make this pandemic less severe than the 1918 one.
However, there are a few hallmarks of pandemic flu. They generally make younger people (5-45) sicker than seasonal flu. There are more excess deaths in this group whereas usually the excess deaths in the over-65 group. Pregnant women are always particularly at risk from a pandemic strain and this has always been the case. This is because pregnancy makes you immuno-suppressed and also restricts the lungs. In this pandemic the evidence coming through is that some underlying condition put you more at risk of complications - primarily respiratory problems, then obesity, and diabetes, immunosuppression, renal and neurological disease. This encompasses a lot of the population - including a lot of APS/Lupus sufferers.
However as APS/Lupus sufferers we are well used to already being careful. We are emotionally more used to dealing with health uncertainties and therefore may not be as anxious as the general population. We should try and avoid busy indoor places - such as concerts, theatres, cinemas, Tesco’s - this was the list my GP gave me on Monday . . . . . .
Remember to wash your hands before you eat and try not to touch your eye, hands or nose EVER!
You only have to do this until the vaccine - which will hopefully get to vulnerable groups by end August - end September!
I hope this is helpful.
If anyone has any other questions, please ask and I will try and find out.
love
Cathy x
Group Moderator
Hughes Support Forum