Coping with the medicines
In collaboration with relevant stakeholders, NTM Patient Care UK has developed a booklet for patients, providing information and tips on the treatment of NTM . This was led by the Chairs of the NTM Network UK Pharmacist Subgroup with support from the NTM Network UK Pharmacist Subgroup members, Chair of NTM Network UK, NTM Patient Care UK, and most importantly our patient stakeholders.
We do hope the information provided in this booklet is useful to both NTM patients and their wider care community, however we should highlight that this information is provided for guidance only. Please be aware that each person’s NTM treatment journey may differ, with treatment usually tailored to the individual patient. However, if you are concerned that any information we have provided here is different to that which has been recommended to you, please speak to your NTM team.
We provide the booklet as a downloadable PDF below, and to make it easier to locate specific information on the most widely prescribed NTM treatments, we have also separated these into individual appendices listed below.
Treatment of NTM (booklet with all appendices) - To view a PDF, please click on the following link; Treatment of NTM booklet (with all appendices)
Treatment of NTM (booklet without appendices) - To view a PDF of the booklet, please click on the following link; Treatment of NTM booklet (without appendices)
Appendix 1: “The Big Three” - To view a PDF, please click on the following link; Appendix 1 - "The Big Three"
Appendix 2: “Clofazamine ” - To view a PDF, please click on the following link; Appendix 2 - Clofazamine
Appendix 3: Ciprofloxacin & Moxifloxacin - To view a PDF, please click on the following link; Appendix 3 - Ciprofloxacin & Moxifloxacin
Appendix 4: Co-trimoxazole - To view a PDF, please click on the following link; Appendix 4 - Co-trimoxazole
Appendix 5: Doxycycline & Minocycline - To view a PDF, please click on the following link; Appendix 5 - Doxycycline & Minocycline
Appendix 6: Isoniazid - To view a PDF, please click on the following link; Appendix 6 - Isoniazid
Appendix 7: Linezolid - To view a PDF, please click on the following link; Appendix 7 - Linezolid
Appendix 8: Nebulised Amikacin - To view a PDF, please click on the following link; Appendix 8 - Nebulised Amikacin
Appendix 9: Nebulised Liposomal Amikacin - To view a PDF, please click on the following link; Appendix 9 - Nebulised Liposomal Amikacin
Please also find two forms below that may assist you (and your specialist care team) with managing your medicines;
Coping with the Medicines
We also have some more general information here below, as well as a video where Professor Michael King, an NTM Patient Expert, explains more about the treatment programme he was put on.
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The ‘Big Three’
Most people diagnosed with NTM and who start treatment take three antibiotics. These are usually azithromycin or clarithromycin, together with rifampicin and ethambutol. Other antibiotics may be used instead, depending on the type of NTM that needs treatment. Most antibiotics have possible side-effects and may cause adverse reactions in the body.
Side effects
Although some people can take the tablets without any difficulty, most find that they have side effects, at least at the start of treatment.
The commonest impact is on appetite and food intake. You may lose your appetite and/or develop indigestion when you eat.
You may also notice a change in bowel habit, including loose motions or diarrhoea. This is because the antibiotics may also reduce the good bacteria in your gut. These effects can be a major hurdle for some patients if they persist throughout the 12, 18 or 24 months of treatment.
It is always worthwhile varying how you take the tablets, while keeping in mind those ones that need to be taken on an empty stomach.
There is no certain evidence that taking the ‘big three’ every day is more effective than taking them three times a week. Thus, if the side effects are intolerable, discuss this with your doctor, who may advise you to take the medication three times a week as a safe alternative.
The impact on our bodies
Many people who contract NTM are older and thus their bodies may be less efficient at removing the medicine from their systems. Their bodies may need lower doses of the antibiotics in order to avoid adverse effects, while still being effective.
Your doctor will regularly monitor your blood count, and liver and kidney function to make sure that the tablets are not causing any harm and to regulate your dose. This is common for many illnesses.
People suffering persistent stomach or bowel side effects may benefit from seeing a dietician, who will offer suggestions to help maintain a healthy diet and make eating less challenging. They may also benefit from regularly taking probiotics or prebiotics.
Probiotics are ‘good’ bacteria that are found in some milk products such as yogurt and kefir. They can also be taken in dry form in sustained release capsules, which can be obtained over-the-counter in health food stores.
Prebiotics are mainly vegetable or cereal based foods that are high in fibre and encourage growth of the good bacteria in the gut (the microbiome).
It is also important to maintain a normal level of vitamin D in the body, particularly in the winter months when we may become a bit deficient. Vitamin D is essential for fighting infection and keeping the body healthy. Vitamin D preparations are easily obtainable in health food stores and 15-25 micrograms (or 800-1000 international units) a day is sufficient. Your doctor can measure the levels of vitamin D in your body as a check.
It is very important to remember to take the antibiotic when it is due. Regularly forgetting to take the tablet or giving up for short periods may mean that the bacteria become resistant. Thus, placing your doses in a weekly Dosette box or at least handy to your daily activities will ensure that you will not forget them. Curiously, rifampicin causes urine to become bright orange. This harmless side effect can be a benefit, as you always know when you have taken the tablet! When you travel, make sure you keep your antibiotics in your hand luggage so that if your main luggage is lost, you will not find yourself in the predicament of having no ready medication. In fact, it is wise to take extra in case of disruption or delays to your travel plans.
Making sure to take them
Rare adverse effects
On rare occasions, azithromycin can cause irregularities in the ECG. These are not usually harmful in themselves but may indicate that your doctor should reduce the dose or change to another antibiotic.
Ethambutol very rarely causes problems by damaging the sharpness of your vision or interfering with hearing. These adverse effects are uncommon, but need regular checking, as they are reversible if caught early on. The first sign of visual damage can be loss of colour vision and thus your clinician will want to test your colour vision regularly. You can also do this on the Internet where there are colour vision charts, which you can use to test yourself. It is also worthwhile having regular optician checks as this will usually not be done at the chest or TB clinic.
Alcohol intake
It is probably good advice to stop consuming alcohol or at least drink very moderately while you are taking the antibiotics. Given that they may cause a change in liver function, this may be a sensible precaution but is not essential. The most important thing is to ensure that you can maintain a good diet as weight loss can be a real problem for many patients and may reduce the body’s ability to resist the infection.
Other medicines
Other treatments may be helpful during the course of NTM. None of these will compromise the way your antibiotics work but they all may have side effects of their own – so always talk to your chest doctor or nurse before starting them.
Antihistamines if you suffer from some degree of allergic reaction.
Bronchodilator inhalers if you suffer from wheeze or asthma symptoms. Patients with COPD or asthma commonly use them to open up the airways, reduce wall thickening and improve breathing.
Medication to loosen up your sputum may also enhance airway clearance.
NTM Treatment
Watch below as Nick Wallace speaks to Professor Michael King, an NTM Patient Expert, who explains more about the treatment programme he was put on.