Resources : Support  Glossary  Education  FAQs  Medical papers  Other good reads
Q : I am thinking of getting a tattoo, is this a good idea?
A : There are risks even for healthy people associated with getting a piercing or a tattoo, the most obvious of these is infection of the pierced skin. If you have been on corticosteroids for some time, your skin will also be thin in places. In some cases there can also be an allergic reaction to the ink, some colours more so than others. If you are on immunosuppressants, the recovery from infection will be prolonged or become difficult so only use reputable studios, ask to see their approval certificate and check out its validity. Also as a side note this also goes for salons that do fingers and toes. You can more easily get a nasty fungus while on immnosuppresents! Do your research when using any of these intimate personal services and be comfortable with hygienic practices and sterilisation of any equipment you will be in intimate contact with. If they are uncomfortable with you checking then maybe they are not the place for you. If you decide to go ahead, make sure that the person delivering the service knows about your autoimmune problems before they start. Talk to them about what precautions they recommend for you and if you are on blood thinners talk to your doctor about this and the other issues above before committing. Aftercare is important too. You should get advice on what types of skin lotion are best for you and keep up the procedures for a bit longer than recommended, until you're sure its completely healed. Here are some guidelines from the Mayo clinic and a video from the NHS in the UK.

Q : Are there any Diets that can be recommended to help or cure?
A : It would be great if there was such an effective diet, unfortunately there is no peer reviewed research that shows anyrestoraive effect of a particular diet. Of course,eating a sensible balanced and nutritious diet will ensure that your body has another weaponin the fight against new infection, this is sensible. There are a few good documents on the Lauren Currie Twilight FoundationWeb site which talks through many of the issues.
Q : Is Ginger beneficial to EGPA suffers and are there any downsides?
A : Some health professionals recommend ginger to fight nausea and other mild pain, particularly osteoarthritis. The studies on these claimed benefits are still ongoing. Ginger should only be taken regularly in consultation with your doctor as there can be side effects for example for those with gallstones, bleeding disorders, hypertension and diabetes. There are potential interactions with medication taken for these conditions and even those who are pregnant should control daily quantities. Also ginger should not be given to young children. For a more in depth review see this article by the University of Maryland Medical which also references support documents.
Q : Grapefruit , should I be eating it?
A : It is certainly an area for serious evaluation in your own circumstance. Grapefruits contain a group of chemicals, furanocoumarins, which can affect the amount of time it takes for a drug to be broken down by the body concentrating their effect.See this article for more information and get advise if you are unsure.Prescription drugs and grapefruit a 'deadly mix' NHS Choices.
Q : Superfoods , do they do you any good?
A : We are all continuously bombarded about diet through the media, interest groups and those looking to make a quick buck from the latest fad. Superfoods such as blueberries, goji berries, chocolate, oily fish, wheatgrass, pomegranate juice, green tea, broccoli, garlic and beetroot typically feature in lists of things you should eat. It should be said, whatever the effectiveness of these foods, they cannot negate unhealthy eating, lack of exercise, smoking, excessive alcohol and so on. Given a healthy lifesyle there is still debate about the actual benefits. This article from the NHS, which covers current thinking and research can be downloaded Miracle foods myths and the media NHS Choices.

Q : Why am I putting on weight, is there anything I can do about it?
A : Unfortunately, if you are taking long term corticosteroids some weight gain is almost inevitable due to increased appetite and distribution of body fat to the stomach and elsewhere. Oedema can also be a side effect of EGPA or medication you are taking. Exercise, healthy diet and a dicussion with your doctor about oedema control would be good starting points.  More from Cortisone-info

Q : Can leukotriene receptor antagonists (LTRA's) like Montelukast (Singulair) trigger EGPA?
A : This has been a hotly debated subject for many years! Firstly it should be said that LTRAs are a very common form of treatment for asthma, so there are by definition, a large number of asthmatics on LTRAs who have not developed EGPA. Consequently, an asthmatic who develops EGPA will often have taken LTRAs as part of chronic asthma treatment. So its easy to point to circumstantial evidence. Also, it should be recognised that the steroid sparing potential of LTRAs would, for many, have led to steroid taper. This potentially could unmask pre-existing EGPA. Further, LTRA therapy may have been introduced for some individuals in response to what may have been undiagnosed early onset of EGPA, thus they already had the disease prior to taking LTRAs. The medical debate started many years ago with conclusions based on limited data, where a connection was postulated. In recent years however, more in depth studies have been conducted and debate has moved towards establishing the narrower circumstances where LTRAs may or may not be implicated.
The following editorial paper Leukotriene receptor antagonist therapy and Churg Strauss syndrome: culprit or innocent bystander? discusses the thinking in 2008 which is cautious about ascribing a definite link whilst leaving the door open to further study. Likewise, the drugs companies have also alerted patients to the rare possibility that EGPA symptoms may be experienced particularly during steroid reduction or removal. They do not suggest a causative link. This is an area where individuals need to discuss with their medical specialists to arrive at an informed conclusion.
Q : Is it safe to take mycophenolate mofetil (Cellcept) if I am pregnant or considering this?
A : The manufacturer, Roche, advises against use of Cellcept due to the higher risk of losing a baby especially in the first 3 months. Pregnancy tests are therefore essential and the manufacturer also suggests a schedule for this, along with guidelines on what to do if you become pregnant whilst on Cellcept.
These are the Roche guidelines : Link
The UK government has also issued a document which raises the additional potential for birth defects, adding that effective contraception for both women and men should be undertaken when on Cellcept.
These are the UK government guidelines : Link
Clearly this is a very important issue especially for women of child bearing age and medical advice should be sought on what alternatives are available.

Test Results.
Q : My blood results are not normal, should I be worried?
A : Your doctor would advise in the first instance of any cause for concern. Blood results are an indicator of health and may be outside of the "normal range" for many reasons such as age/gender etc, lifestyle, use of prescription and other drugs and even blood specimen preparation. The use of good statistical practice ensures laboratories intentionally set the normal range so that 5% of healthy patients fall outside of it, so an abnormal result does not necessarily mean that there is something wrong. Diagnosis and treatment cannot be made soley with a blood test but it can be used to detect problems or trends and provide timely solutions on which your doctor will advise.
Summarised, with kind permission, from Amarillo Medical Specialists, LLP where detail on blood result interpretation may be found.

Q : What should I do about vaccination, especially against flu?
A : Vaccinations do not always prevent the target disease but can significantly reduce the impact.
In general, 'Live' vaccines should be avoided but even with 'Killed' vaccines there can be complicating factors in your own situation. Individuals have varying degrees of immunosuppression, immunisation response, and susceptibility to infection. You should always discuss the options with your medical practitioner. This article from VF in an interview with Selina Gierer covers most of the common questions. VF Article

FAQ help.

Important. The responses to questions in this area can be very subjective, with input from various sources and personal experiences.
A balanced view is intendede but invite any FAQ answer to be challenged. Please treat any FAQ answer with due caution, weigh against your own experience and discuss with your doctor before taking any action particularly regarding medication.

Never change your medication regime except under advise of your doctor.

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