Is There Something I Can Do To Help My Lupus?
This site is intended for healthcare professionals as a useful source of information on the diagnosis, treatment and support of patients with lupus and related connective tissue diseases.
There are things that you can do to help yourself in addition to taking medications:
Sun protection - sun protection is important because sunlight can make your lupus worse or trigger a flare.
• Use a sunscreen lotion or roll-on with a sun protection factor (SPF) of 50.
• Be sure to apply 30 minutes before going out even on cloudy days, and in the winter, and don't forget to use it on your ears. Find the preparation which best suits you (some rub in better than others).
• Protect exposed areas with a hat and long sleeved shirts.
The sun is strongest between 10am and 2pm and you should avoid exposure at this time.
Sometimes lupus may be affected by artificial lighting such as fluorescent, halogen and LED lights, so do check whether the lighting in your home or school could be affecting you and could be filtered or the bulb strength reduced.
Fatigue and pacing - fatigue is very common in lupus. You may have a limited pot of energy, so it is important to pace yourself and not overdo it. It's all about prioritising and taking things at a steady pace, so you get done what you need and want to do. Don't participate in activities until you get completely exhausted. Ask for help when you need it. Listen to your body and if you feel tired, rest even if it's only for a few minutes and then resume your activity. You may find that resting for 30 minutes when you get home from school will help to give you energy to do activities in the evening. Your medical team can give you a lot of helpful advice.
Exercise - exercise is always important but during a flare of lupus you may want to reduce your sports activity. Once you are feeling better it is important to get back to doing some physical activity. Exercise helps strengthen your muscles and bones, keep joints flexible and control weight.
Diet - no special diet will cure or prevent a flare of your lupus. A well-balanced diet that includes a variety of foods, especially fruit and vegetables, is key to healthy nutrition. Try to avoid eating too many foods which contain high levels of sugars, salt and fats. Plan to eat foods high in calcium (eg. milk, cheese, cauliflower, broccoli) to help keep bones strong. If it is difficult to receive enough calcium through diet alone, your doctor may prescribe a calcium supplement.
Remember that prednisolone can cause you to feel hungry and this increase in appetite is not your fault. If you try to replace crisps and sweets with fruit, vegetables, nuts and seeds this may help to slow down any weight gain.
Are there any vaccinations or immunisations that I should or shouldn't have?
These are very important. Always check with your nurse specialist or doctor if you are unsure, especially if you are on medicines which suppress your immune system (eg prednisolone, azathioprine etc).
There are two vaccines that your doctor may recommend you have because of your lupus. These are injections, which can be given by your family doctor:
Flu vaccine - it is wise to get vaccinated every year in October or November. The injections is an inactive 'dead' form of the flu virus, so it cannot cause an infection. The nasal spray vaccination is an attenuated 'weakened' form of the flu virus which could potentially pose a risk of infection in those with a compromised immune system.
Pneumococcal vaccine - this vaccination is recommended for all patients with lupus to protect against a serious infection in your blood or lung.
Sun protection - sun protection is important because sunlight can make your lupus worse or trigger a flare.
• Use a sunscreen lotion or roll-on with a sun protection factor (SPF) of 50.
• Be sure to apply 30 minutes before going out even on cloudy days, and in the winter, and don't forget to use it on your ears. Find the preparation which best suits you (some rub in better than others).
• Protect exposed areas with a hat and long sleeved shirts.
The sun is strongest between 10am and 2pm and you should avoid exposure at this time.
Sometimes lupus may be affected by artificial lighting such as fluorescent, halogen and LED lights, so do check whether the lighting in your home or school could be affecting you and could be filtered or the bulb strength reduced.
Fatigue and pacing - fatigue is very common in lupus. You may have a limited pot of energy, so it is important to pace yourself and not overdo it. It's all about prioritising and taking things at a steady pace, so you get done what you need and want to do. Don't participate in activities until you get completely exhausted. Ask for help when you need it. Listen to your body and if you feel tired, rest even if it's only for a few minutes and then resume your activity. You may find that resting for 30 minutes when you get home from school will help to give you energy to do activities in the evening. Your medical team can give you a lot of helpful advice.
Exercise - exercise is always important but during a flare of lupus you may want to reduce your sports activity. Once you are feeling better it is important to get back to doing some physical activity. Exercise helps strengthen your muscles and bones, keep joints flexible and control weight.
Diet - no special diet will cure or prevent a flare of your lupus. A well-balanced diet that includes a variety of foods, especially fruit and vegetables, is key to healthy nutrition. Try to avoid eating too many foods which contain high levels of sugars, salt and fats. Plan to eat foods high in calcium (eg. milk, cheese, cauliflower, broccoli) to help keep bones strong. If it is difficult to receive enough calcium through diet alone, your doctor may prescribe a calcium supplement.
Remember that prednisolone can cause you to feel hungry and this increase in appetite is not your fault. If you try to replace crisps and sweets with fruit, vegetables, nuts and seeds this may help to slow down any weight gain.
Are there any vaccinations or immunisations that I should or shouldn't have?
These are very important. Always check with your nurse specialist or doctor if you are unsure, especially if you are on medicines which suppress your immune system (eg prednisolone, azathioprine etc).
There are two vaccines that your doctor may recommend you have because of your lupus. These are injections, which can be given by your family doctor:
Flu vaccine - it is wise to get vaccinated every year in October or November. The injections is an inactive 'dead' form of the flu virus, so it cannot cause an infection. The nasal spray vaccination is an attenuated 'weakened' form of the flu virus which could potentially pose a risk of infection in those with a compromised immune system.
Pneumococcal vaccine - this vaccination is recommended for all patients with lupus to protect against a serious infection in your blood or lung.
April's story
Hi my name is April, I am 14 years old and I was diagnosed with lupus in May 2008. I am not going to lie, lupus (SLE) is hard, but you just need to get used to it. At first it horrified me reading all the stories and hearing what different people went through having lupus.
I am a teenager with an illness and it is hard, no one really knows or can even imagine how you feel or what you are going through. It stops me sometimes doing all the things that my friends do. I want to prove to myself that I can go all day and do things all night just like all my friends but deep down I know that I can't just yet, I have to rest and my mum has taught me that.
Friends and family are so important, without them it is so hard. You need them to help you or make you laugh when you feel at your worst. My mum helped me the most when I was so bad that I could not even walk on my own, and held herself together even though it was hurting her just as much as me.
Friends and family are so important, without them it is so hard. You need them to help you or make you laugh when you feel at your worst. My mum helped me the most when I was so bad that I could not even walk on my own, and held herself together even though it was hurting her just as much as me.
I am still not at my best but I know that I can only get better and I hope that I am going to be off all my tablets and be back to me, April maybe not this year and maybe not next year but sometime in the future.
If you have just been diagnosed with lupus try not to get yourself into the state I did, you can only get better; just trust in your medication and you will be back to yourself!!
If you have just been diagnosed with lupus try not to get yourself into the state I did, you can only get better; just trust in your medication and you will be back to yourself!!
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