For example, a test for antinuclear antibodies ANAs in the blood is probably the first tool a physician will use. A positive ANA test does not necessarily mean that someone has lupus; in fact, one out of five normal women has a positive ANA.
However, a negative ANA test greatly reduces the suspicion. Other sets of criteria, known as disease activity indices, exist for the monitoring of lupus.
These forms allow a physician examining a patient to check for the improvement or worsening of the disease. Sometimes these indices will show no signs of lupus, even when the patient feels badly. This is because some of the problems that occur in lupus, such as chronic fatigue and pain, are not tracked by the indices.
Instead, these symptoms represent a co-occuring problem called fibromyalgia. Since other diseases and conditions appear similar to lupus, adherence to classification can greatly contribute to an accurate diagnosis. In general, the best source of vitamin D is a healthy and safe amount of sunlight on bare skin.
Be careful of any exclusion diets where large food groups are removed from the diet — you need all the nutrients that a well-balanced diet will provide. Consult a dietitian if you need more specific advice.
Too much ultraviolet light from sunlight can cause a red rash across the cheeks and the bridge of the nose, often known as the butterfly rash. It can also sometimes cause problems with internal organs to flare up. Bear this in mind when choosing a holiday destination and discuss with your nurse specialist or dermatologist if in doubt.
Keep out of the midday sun and wear a hat. Keep your skin covered or use sun cream of factor 50 or greater — which is available on prescription for people with lupus. You can also buy high-factor sun creams that include a tint and can be used as foundation make-up.
Be careful when sitting under sun umbrellas on a paved area as the sunlight will be reflected onto your face. Smoking is bad for the circulation and is likely to make symptoms worse. Regular exercise will improve your circulation.
Talk to your doctor about these. Because of the pain, fatigue and disruption to life, lupus can cause anxiety and depression. This could be a friend, relative or a healthcare professional. Our helpline is open Monday to Friday from 9am to 8pm. Call free from the UK on For example — you might want to try relaxation techniques such as meditation or mindfulness.
Your doctor may be able to refer you to a psychologist who can help with coping strategies. Therapies such as cognitive behavioural therapy CBT may help. This is a talking therapy that can help you manage problems by changing the way you think and behave. Regular exercise can improve feelings of stress, anxiety and depression. If you have lupus, you may want to seek extra support at work.
You could talk to your human resources department. There might be equipment that your company could provide you with to make you more comfortable and help you do your job better.
There may also be flexible working arrangements so you could work from home at least some of the week, or alter your shift patterns to avoid rush hours. The Equality Act means that employers have a responsibility to remove barriers in the workplace for people with a disability and financial support is available to help them do this through the Access to Work scheme.
You may not think the term disability is appropriate for you, especially if your condition is well treated and under control a lot of the time. Lupus is a difficult condition to live with and throws up many challenges, especially during periods of life when you may need more energy.
You may have access to an education programme through a lupus nurse specialist or you may wish to meet others through patient support groups such as LUPUS UK. If you have lupus you should talk to your doctor about what form of contraception would be best for you.
You might need to avoid contraceptive pills containing oestrogen as there is a very small risk that they can cause blood clots, known as deep vein thrombosis DVT. These blood clots can be dangerous if they break off and travel around the body, such as to the lungs.
This is given by injection. It increases the risk of developing osteoporosis because it reduces the levels of oestrogen in your body, which is important for bone health.
The Mirena coil, which releases progesterone only, is often a recommended option for women with lupus. In the past there has been concern about hormone replacement therapy HRT increasing the risk of flare-ups of lupus. Make sure you speak to your rheumatologist if you are planning to start HRT. But if you have joint pain, acupuncture and massage may help. The pain relief may only last a short time to begin with, but repeated treatments may bring longer-lasting benefits. You may need to visit a private practitioner as the treatment may not be available on the NHS.
Generally speaking, complementary and alternative treatments are safe if you want to try them, but you should always discuss their use with your doctor before starting treatment. There are some risks associated with specific therapies. In many cases, the risks associated with complementary and alternative treatments are more to do with the therapist than the therapy. Most women with lupus should be able to have a baby if they wish to.
You may need to see an obstetrician with a special interest in lupus for further advice. The following drugs must be stopped before you get pregnant, because they can harm an unborn baby:. You might also need to wait for a period of time after coming off any of these drugs before it is safe to get pregnant. If you become pregnant unexpectedly while on one of these drugs, talk to your healthcare team as soon as you can.
In contrast, steroids, hydroxychloroquine and azathioprine are safe to take during pregnancy. A small number of women with very severe lupus may be advised against having a baby as pregnancy can put a strain on the heart, lungs and kidneys. Talk to your rheumatology team or GP. However, treatment with aspirin or heparin reduces this risk, and there are now many more successful pregnancies in women who have these antibodies.
If you do have kidney disease, you may have increased protein in your urine during the later stages of pregnancy. Protein in urine could also be a sign of a condition called pre-eclampsia.
This causes pregnant women to have high blood pressure and it is more common than kidney disease. If you have proteins in your blood during pregnancy it can be difficult to work out whether this is due to kidney disease or pre-eclampsia.
The doctors looking after your pregnancy will check for this and consult your rheumatologist if necessary. This means the baby may have a rash or a slow heartbeat. If this happens in one pregnancy, there is a slightly greater risk that it could happen in any further pregnancies. Versus Arthritis supports a wide range of projects that aim to prevent the onset of lupus, transform its treatment and ultimately find a cure.
New therapeutic approaches that target cells and molecules believed to be part of the cause of lupus are being used to help many patients. Further research studies should allow us to find out how these and other drugs can be used to the best effect. I was diagnosed with discoid lupus over 20 years ago. It started with a spot on the tip of my nose and rashes and discolouration on my face, including my eyebrows. I also had indents on my fingertips. For a time, I was successfully managing my discoid lupus, thanks to being prescribed hydroxychloroquine.
But four years later I started developing new symptoms. It began with night sweats, my bed clothes would be soaked. My sense of smell altered. I had pillows to prop me up. After being in hospital for a week I was off work and recovering at home. I then started to develop joint pains everywhere.
Because of all these new symptoms I was referred to a rheumatology consultant , who confirmed I had developed SLE. This was a scary and bewildering time. I was tried on different kinds of immunosuppressive drugs, and I eventually settled on methotrexate. I was also prescribed steroid tablets as well as calcium with vitamin D. I was still taking the hydroxychloroquine. It then came to light that I was developing issues with my kidneys and so I was put on a drug called mycophenolate mofetil, and I was taken off methotrexate.
The real plus for me was this resolved my joint pains. As I had been on hydroxychloroquine for a long time, last year my rheumatologist stopped prescribing me it due to concern about the risk to my eyes. With lupus, there can be confusion, frustration and resentment. My advice would be keep on top of your medication, have a healthy lifestyle, try to understand your condition and make the most of the expertise, care and help available from your healthcare professionals.
Have positivity and hope in your armoury. There is always hope, there is always help available, and you will have possibilities and options open to you. Lupus SLE. Download versus Arthritis - Lupus information booklet. Print this page. What is lupus? There are two main types of lupus: discoid lupus systemic lupus erythematosus SLE.
The rest of this information is about SLE, which we will call lupus. The three most common symptoms of lupus are: joint pains skin rashes, which may become noticeable after being out in the sun extreme tiredness, known as fatigue. Other general symptoms are: ulcers in the mouth or nose hair loss fever weight loss swelling of the lymph glands, in the neck, armpits or groin, or under the chin depression anxiety.
Who gets lupus? There are some factors that probably make this more likely: an illness or infection strong sunlight hormonal changes, such as during puberty smoking cigarettes some medications — this is known as drug-induced lupus, and this usually gets better when people come off the medication that caused it. In many instances, symptomatic treatment is initiated before a definitive diagnosis can be made. Keep a journal of your day-to-day symptoms to share with them.
Include this information:. Your answers to these questions can help your doctor develop a more targeted treatment plan for you. Overloaded schedules may force doctors to spend just 15 minutes, on average , with each patient. Make the most of the time you have with your rheumatologist by writing up a list of questions beforehand. Also, include medications you take to treat other conditions. List any herbal supplements or vitamins that are part of your daily regimen as well.
Write down the dose, and when in the day morning or evening you take each medication. You could also put all the medications in a bag and bring them with you to your appointment, although a detailed list with dosages will take less time for your doctor to review. Knowing exactly which medications you take will help your doctor make changes to your regimen or add a new prescription if you need it.
Ask your partner, trusted friend, or family member to come with you to your appointment as long as pandemic rules allow it. They can take notes so you can stay focused on the conversation with your doctor. Your doctor might use imaging tests like an X-ray or MRI scan to look for changes in your bones or joints. For some of these tests, you might need to prepare by not eating or drinking for several hours, or by removing anything containing metal, such as hearing aids or dentures.
Because of time constraints, your doctor might keep the focus of your appointment on medical therapies.
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