AL amyloidosis: caring for yourself

Taking care of yourself will help you to improve your quality of life and minimise some side effects of AL amyloidosis or its treatments.

It is vital to develop good communication with your doctor and healthcare team to maximise the support and efficacy of the treatment you receive. We recommend that you prepare some questions to ask your doctor at your check-up. Many people find that it is helpful to take their partner or friend with them; this can help you to take in and remember the doctor’s suggestions. Furthermore, it may be useful to track symptoms, side effects and any changes to your well-being. Discussing these with your doctor can be very helpful. If your doctor proposes a change in your treatment, it is perfectly acceptable to ask for a little more time to make your decision when you can discuss it with your family.

Your doctor or healthcare team may give you recommendations on what to eat and drink, and what to avoid. It is important to follow a healthy diet if you are an AL amyloidosis patient. Especially how much you may drink a day and the salt and protein content is important. It is advised to consult a dietician.

Exercise and physical activity may reduce fatigue, feelings of anxiety and depression, and build muscle strength. Although every patient is different, some form of exercise may benefit you. Aerobic exercises (walking, cycling, using a cross trainer etc) must be performed carefully especially in patients with heart involvement. If you are not used to regular physical activity, make sure to speak to your doctor in advance and then build up your routine gradually, while listening to your body and staying within your limits to avoid over-exhausting yourself. A visit to a physiotherapist, who can help to assemble an exercise routine that fits your needs and ability, may be beneficial. The key point to remember when exercising is not to overdo it and only do as much as you feel capable of doing. Stop exercising and consult your doctor, if you experience dizziness or nausea, shortness of breath, sharp or stabbing pain in the chest or any other area of your body.

If certain organs are affected by the disease, this may influence your ability to partake in certain forms of physical activity. Cardiac amyloidosis patients, for example, should take additional care during exercise; you should make sure that you stay below 80% of your maximum heart rate (which is defined by your height, weight and age). If your immune system is weakened due to treatment side effects, you should take care to avoid places where you could easily contract an infection (e.g., saunas). AL amyloidosis can cause your bones and visceral organs (i.e., liver and spleen) to become more brittle, hence, certain sports should be avoided (e.g., contact sports) to minimise the chance of injuring yourself.

Loss of interest in sex is not at all uncommon and may be caused by psychological or emotional factors, such as feeling anxious or exhausted. Alternatively, the cause may be physical, for example neuropathy caused by AL amyloidosis may lead to erectile dysfunction. Some treatment regimens are also known to possess that side effect. Not wanting to engage in sex can itself cause more stress between partners, if you feel depressed or unattractive, or if you or your partner feel unwanted or rejected.

It’s important to talk to your partner, so that you understand each other’s feelings, and to make sure that neither of you misinterprets the situation. Once you start to talk, you should be able to find out what level of physical contact feels right for the time being, and then gradually develop that into a fuller intimacy when you are ready. Your doctors and nurses can also offer guidance and support, and they will not be embarrassed if you ask for help. For example, if you suffer from erectile dysfunction due to physical reasons, if your doctor feels it is safe to do, so he/she can prescribe medications (such as sildenafil), which may be helpful.

AL amyloidosis may significantly impact oral health. Presence of amyloid protein in the oral tissues may lead to enlargement of the tongue, as well as frequent oral bleeding. Good dental hygiene, using a soft toothbrush, and keeping yourself well hydrated are the best ways to prevent infection in your mouth. Any pain or discomfort in your mouth should be reported to your doctor or nurse and can be relieved with antibiotic or pain- killing mouthwashes, or by specific antifungal or antiviral treatments. You should avoid salty, spicy or acidic foods that can increase soreness.

Certain treatments can increase the risk of mouth ulcers or an inflamed mouth lining. Some other treatments can temporarily lower your blood platelet count, and this can make you more liable to bleed from your gums. You may find that your mouth stays rather dry – this is because treatment may interfere with saliva production, but it can be relieved with an artificial saliva spray.

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