Questions and Answers

I have CGD and I take antibiotics on a regular basis and I'm worried about developing antibiotic resistance.  What advice can you give?

Individuals colonised with or exposed to certain bacteria may develop antimicrobial resistance. This will require a change in antibiotics so that the particular bacterium is eradicated. Where eradication is not possible, there may still be better suppression with an alternative agent and the resistant strain may die out allowing the original agent to be effective again. Antibiotic prophylaxis, when people take antibiotics every day to prevent infection, is only advised when all the benefits outweigh all the risks and resistance is one of these.

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Is there any evidence of antibiotic resistance in CGD?

This has not been systematically studied. However, from clinical experience doctors have not encountered significant problems with antibiotic resistance. Many patients have been taking co-trimoxazole for many years and it remains effective. However, break-through infections will occur at intervals, and will require a different antibiotic to treat them.

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I have CGD and I’ve been on long-term steroids and worried about osteoporosis, weight gain and cholesterol levels?

Doctors when they prescribe steroids carefully weigh up the benefits versus health risks. They will carefully monitor your health and tailor the doses given and will keep them at the lowest level needed to give clinical benefit. Calcium and vitamin D supplements may be recommended to help prevent bone thinning (osteoporosis). People on steroids should also have their lipids and glucose levels checked regularly, and may require anti-acid medications to protect the stomach.


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Can people with CGD donate their organs?

Everyone can join the organ donation register in the UK. Take a look at this NHS website page giving information about how to join the register. The decision on suitability of organs for transplantation is a clinical one made at the time an individual is deceased or if live organ donation is considered during the individual’s lifetime.

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Can people with CGD donate blood?

No because in CGD the white blood cells do not work properly.

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I have CGD and have started having trouble with my bowels with pain and lots of watery diarrhoea for the last two weeks. I have no appetite; I'm losing weight and feel drained. What advice can you give?

Having gut problems is unfortunately a common complication of CGD but may also be a sign of an infection. Any change in your bowel habits and the consistency and look of your poo should be reported to your immunology team. They can then take steps to help rule out any infection before it takes hold, and can evaluate you for CGD-associated bowel disease.

 

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What drugs are available to treat bowel inflammation in CGD?

Doctors have several medicines available to treat inflammatory bowel disease e.g. oral mesalazine and hydroxychloroquine.  Sometimes corticosteroids may be used but steroids can suppress the immune system leaving CGD patients even more vulnerable to infection. Doctors therefore give them cautiously by carefully weighing up all the risks and benefits associated with their use before treating a particular patient.

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Can inflammation in CGD be controlled by anti-histamines?  

No a different pathway is involved in inflammation so anti-histamines won’t work. Drugs such as hydroxychloroquine, mesalazine and steroids are given to treat inflammation. Anti-histamines however may be useful to treat allergic rhinitis, inflammation of the inside of the nose caused by an allergen, such as pollen, dust, mould or flakes of skin from certain animals.


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What new drugs are on the horizon to treat CGD and its complications?

Several new antibiotics and anti-fungal drugs will soon be available to treat infection complications in CGD.

In the USA the Food and Drug Agency have approved a new drug that works against a cell marker known as an integrin present on white blood cells and this may benefit CGD patients who have inflammatory bowel problems.

For people who may have lung fibrosis (scarring of the lungs) two new drugs are now available.

Your doctor will be aware of these new developments and will offer them to you if they think they are appropriate. However, there is currently no evidence that these medications are useful for CGD-related disease and more information is required.

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My daughter is pregnant and has CGD and we’re worried about the impact of the medications on the baby.

Most of the medicines used to treat CGD are fairly safe but you must have a review and the medicines changed as needed.  Any pregnancy should be communicated to your immunology team as soon as possible. The team can also arrange for you to see a genetic counsellor if this is appropriate.

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Travel insurance - is it necessary to mention my CGD when completing or renewing an insurance form?

Yes you absolutely must declare your CGD and any other health condition you may have otherwise your insurance will be invalid and you will not be able to claim should you need to. Visit our travel page for more information and a list of insurance companies that cover people affected by CGD.

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