Davids Lupus Awareness Blog: FAQ's

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Saturday, 14 July 2018

What Is my life expectancy if I have lupus?

Oladimeji July 14, 2018 0

What is lupus?

Lupus is a long-term autoimmune disease. In people with lupus, the immune system attacks and causes inflammation in usually healthy cells, tissue, and organs. Symptoms and the organs that are affected differ from person to person.

Chest pain while deep breathing may be one symptom of lupus.

Experts are unsure what causes lupus, but they think the reasons could be linked to genes, environment, and hormones.

The main symptoms of lupus are tiredness, joint pain, and rashes. Some people may have very mild symptoms. Other times, lupus can flare up and make existing symptoms more severe or cause the person to develop new symptoms.

The American College of Rheumatology list various symptoms that doctors can use as a guide to diagnose lupus. These include:

Butterfly-shaped rash over the cheeks
Raised oval or round rash
Rash that appears on exposure to the sun
Mouth or nose sores that last from a few days to over a month
Arthritis
Lung or heart inflammation that causes chest pain while deep breathing
Blood or protein in urine
Seizures, strokes, or psychosis
Abnormal blood test results.

If a person has four or more of these symptoms, they should consult their doctor.

Outlook

As a result of early diagnosis and better treatment, lupus is no longer regarded as fatal for all people.

People who experience extreme flare-ups are more likely to have other life-threatening difficulties, such as damaged internal organs and tissues. How deadly lupus is depends on the severity of the disease, how the person's body responds to treatments, and other factors.

For people with lupus, some treatments can increase the risk of developing potentially fatal infections. However, the majority of people with lupus can expect a normal or near-normal life expectancy.

Research has shown that many people diagnosed with lupus have been living with the disease for up to 40 years.

In the future, scientists hope to identify people at risk of lupus through genetic studies. This will allow doctors to begin preventive treatment of known complications much earlier. They also hope to find the molecular pathways that cause lupus so they can target them for new therapies.

Effects

Lupus affects almost every part of the anatomy. How the complications are handled may play a role in how long the person with the condition lives and the quality of their life.

Some of the ways that lupus may affect the body are described below.

Brain and nervous system

According to the Lupus Research Alliance, about half of people with lupus experience problems with their ability to think. Around 1 in 5 experience headaches, memory loss, mood swings, and stroke. Almost 1 in 10 people develop blood clots, which may also lead to stroke.

If headaches do not get better with over-the-counter medicine, people with lupus should tell their doctor. Some headaches can be caused by vasculitis, a condition caused by inflammation of the blood vessels.

Eyes

Eye problems are common. People with lupus may notice:

Changes in the skin surrounding the eyes
Dry, "gritty" eyes - seen in 25 percent of people with lupus
Inflammation of the white protective layer of the eye
Retinal blood vessel changes - occurring in up to 28 percent of patients
Damage to nerves that control eye movement and vision
Sjögren's syndrome - an inability to produce enough tears - is apparent in 20 percent of lupus patients
Cataracts
Impaired vision
Vision loss.

Mouth

Lupus can affect the mouth in a variety of ways. Mouth sores, also known as oral lesions or ulcers, are one of the most common symptoms and occur in around 4 to 45 percent of people with lupus.

Drugs used to treat lupus, such as corticosteroids, can sometimes cause mouth dryness,cold sores, swelling, and yeast infections.

Skin

Many people with lupus develop skin problems, and rashes or sores are very common. Up to 70 percent of individuals with lupus are sensitive to ultraviolet (UV) rays in sunlight.

A butterfly-shaped rash appears across the cheeks and nose in around 40 percent of people. This rash is usually either blotchy or red over the whole area and slightly raised.

Blood

Mouth ulcers may be a common sign of lupus.

Blood disorders are common in people with lupus, with red and white blood cells and platelets being affected. The main blood problems connected with lupus include:

Anemia - a shortage of red blood cells
Thrombosis - formation of blood clots
Vasculitis - inflammation of blood vessels
Thrombocytopenia - a condition that causes low levels of platelets
Leukopenia and neutropenia - conditions that cause low levels of white blood cells.

Heart

Heart disease is not only a major complication of lupus, but also the leading cause of deathamong people with the disease. More than half of lupus patients will develop a heart abnormality at some stage.

People with lupus are more susceptible to coronary heart disease because they often have more risk factors. These factors may include high blood pressure, high cholesterol, andtype 2 diabetes.

Lungs

Around 50 percent of people with lupus experience lung problems. Inflammation caused by the disease can affect the lungs, the lining of the lungs, lung blood vessels, and the diaphragm, causing:

Pleuritis - swelling of the membrane surrounding the lungs
Pneumonitis - inflammation of lung tissue
Chronic diffuse interstitial lung disease - where scar tissue prevents oxygen from moving from the lungs to the blood
Pulmonary embolism - where a blood clot blocks the flow of blood from the heart to the lungs.

Kidneys

Lupus that affects the kidneys is called lupus nephritis. It is thought that around 1 in 3people with lupus may develop this disease.

People with lupus nephritis may experience weight gain; puffiness in the feet, ankles, legs, and hands; blood in urine; and high blood pressure.

If untreated, kidney disease can increase the risk of problems such as heart attack and stroke and may progress to complete kidney failure.

Gastrointestinal system

The gastrointestinal system stretches from the mouth to the anus. It includes the organs that digest food and drink and dispose of waste.

Many people with lupus experience gastrointestinal problems due to the disease or side effects of medication used to treat it.

Bones and muscles

For more than half of people who develop lupus, joint pain is one of the first symptoms they may experience. More than 90 percent of lupus patients have joint and muscle pain at some point.

Other muscle and bone issues that arise from lupus include tendonitis, bursitis, carpal tunnel syndrome, and osteoporosis.

Pregnancy

Women with lupus are at a higher risk of pregnancy complications, such as miscarriage, premature birth, and preeclampsia.

Corticosteroid medications used to treat lupus can cause high blood pressure in pregnant woman and increase their risk of gestational diabetes.

Many women with lupus give birth to full-term babies without any difficulties. Women with lupus should contact their doctor before becoming pregnant to ensure the best possible outcome for both mother and child.

Living with lupus

An older couple walk their dog in the countryside

Regular exercise is recommended for people with lupus.

There are many challenges that a person with lupus faces when living with the disease. Some of the medications to treat the disease can cause other problems. In order to live well with lupus, it is important to work with a doctor to ensure the right balance of drugs.

While drugs are an important part of controlling lupus, other steps can be taken by people with lupus to improve their lifestyle and their life expectancy:

Regular exercise - reduces muscular stiffness, prevents osteoporosis, relieves stress, protects the heart
Quitting smoking - prevents infections and heart attacks, decreases the risk ofpneumonia, bronchitis, and coronary artery disease
Resting - relieves fatigue, reduces risk of flares, decreases pain sensitivity
Avoiding direct sun and fluorescent light exposure - protects against UV light sensitivity
Vitamin D - prevents osteoporosis from reduced sunlight exposure
Washing hands regularly - prevents infection
Managing pain - along with prescribed medication, hot showers, baths, and other stress relievers such as acupuncture, tai chi, yoga, and chiropractic may help
Managing mental health - seeking advice from a mental health expert can help with symptoms of depression.

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Thursday, 9 November 2017

FAQ's on Lupus And It's Effects on the Body

Oladimeji November 09, 2017 0

Q:- Should I not consider the pill as a contraceptive means? I have a problem in thatother methods don’t suit me.

A:- Many years ago (and more recently) we have looked at the pill in our lupus patients and have found that in general there are no major problems, especially with the mini pill. A small group of patients with antiphospholipid antibody (or anticardiolipin antibody) have more of a clotting tendency and obviously these patients present a totally different problem. In these patients oestrogen containing pills should be avoided.

Q:- Can azathioprine be used in pregnancy?

A:- The answer, perhaps surprisingly, is yes, although obviously common sense and good practice dictates that the fewer drugs used in pregnancy the better.

Q:- My baby is to be delivered by caesarian section at 36 weeks to prevent my lupus flaring. Is this a good idea or not? I am worried about having a premature baby

A:- Obviously, there are many individual reasons for planning an early caesarian section, but do rest assured that this is common and generally beneficial for the baby. You really should not worry about having a premature baby at 36 weeks

Q:-'I am scared of having a “flare-up” of lupus after a natural birth. What precautions can be taken?

A'- Statistically, the chances of having a flare in lupus are higher after delivery. Having said this, the chances are still small - only a small minority of our lupus patients have flares in the few months after delivery of the baby. Nevertheless, we like to watch our patients more closely at this time and monitor the urine and blood tests more frequently. If the test results become more abnormal, then we can at least step in earlier with more active treatment.

Q:- Having suffered severe lupus, it is now calm and we are thinking of starting a family. Should I tell my GP? Will my lupus react to my pregnancy and should I increase my steroids?

A:- From what you say, there seems every chance of a successful pregnancy. Clearly, it is important to know that the lupus is relatively calm, both from the clinical point of view and from the tests, that the blood pressure and kidney function are reasonable and that the anticardiolipin antibody levels are not high (patients with high anticardiolipin antibodies have a higher risk of miscarriage and this can now be largely prevented). There is no specific need to routinely increase the steroids just because of the pregnancy.

Q:- My mum has systemic lupus and I was wondering if this is hereditary? Is there a chance I will get it too (or my daughters)?

A:- You ask, "Is lupus a genetic disease?" The answer for most people is "no". Lupus does not have a strong 'genetic tendency' seen in many other diseases, but there is evidence emerging that a small but definite genetic tendency exists. As lupus becomes more recognised and more readily diagnosed there are clearly more families, in whom a lupus link exists, and it is these families which are providing important data for research.

The advice of lupus specialists, therefore, is that if there are no specific symptoms, it is probably not necessary to test. If, however, you are anxious or as in your case there is a family history of lupus, and there are symptoms that may be related, then it is far better to know what is going on. The screening test is the ANA. If this is positive, the DNA Binding test may confirm a diagnosis.

Q:- What sort of contraception can I use?

A:- The current view on this has changed over recent years in the light of two studies. Both studies suggest that providing the woman does not have antiphospholipid antibodies, the low-dose combined oral contraceptive should not significantly increase the risk of a lupus flare. In the presence of antiphospholipid antibodies ("sticky blood"), there is an increased risk of blood clots with the combined oral contraceptive. Progesterone is generally OK in APS patients. The Mirena Coil is also generally recommended by the Lupus-In-Pregnancy Clinic at Guys Hospital.

Q:- I would like to know which make of HRT patch is recommended for lupus patients that also suffer from Migraines.

A:- A recent study has suggested that HRT may increase the risk of mild to moderate lupus 'flares'. HRT should only be used for short periods and should be avoided in patients with a risk of blood clots, and especially if they have antiphospholipid (sticky blood) antibodies. Some patients find alternative treatments useful but there have been no clinical trials in this area.

As you suffer from migraines it may be advisable to be tested for "sticky blood", as migraines are a major feature of this condition. The blood tests required are the Lupus Anticoagulant and the Anticardiolipin antibody.

Q:- Is it true that a lot of lupus patients get a positive result on smear test due to them having lupus. If so what action would be taken on a positive result with a lupus patient?

A:- There is a high incidence of abnormal smear tests in lupus patients and research was carried out a few years ago at St. Thomas' Hospital with inconclusive results. Professor David D'Cruz from the Louise Coote Lupus Unit comments that abnormal smear tests in lupus patients rarely progress to cervical cancer. However, it may be advisable to take the advice of a gynaecologist to determine whether further treatment is required.

Q:- Can Lupus affect my menstrual cycle?

A:- Many young women with lupus find that their periods are altered. There may be extra (inter-menstrual) bleeding or, conversely, an absence of periods for several months. This is a common feature of lupus and gives rise to a lot of anxiety. Fortunately, in the majority of women, the periods return to normal once the disease comes under control. As with many illnesses, it appears that general disease activity seems to alter hormone balance.

Q:- I have noticed a distinct pattern emerge, notably my symptoms of lethargy, joint pain and cognitive disturbance become increasingly severe and non-responsive to the drugs from day 14 of my menstrual cycle and, with more severity notable from day 21 onwards. At this point I find it hard to stay awake during the day-time for any length of time or move with any freedom. Are the symptoms related to hormonal activity?

A:- Unfortunately it is not uncommon for lupus patients to experience worsening of their symptoms prior to their monthly period. Specialists sometimes advise that patients could slightly increase their steroid dosage prior to their periods. However, this should not be practised without first consulting your specialist, especially if you are already on quite a high dose.

Some patients find benefit from hormonal remedies, and there may be a remedy that may help you at this time. You could ask your herbalist if there is something that might help. However, it is important that if you consider this option, you should first check with your doctor that the remedy does not interact with the medications you are already taking. This is important.

Q:- I have SLE. My question is my granddaughter has been in contact with Chicken pox, she is 19 months. Should I avoid contact with her?

A:- We always advise caution for lupus patients to avoid chickenpox where possible, as they can suffer a severe reaction if they develop the disease. If you are on immunosuppressant therapy, your immune system will be further reduced, making you more susceptible to infections. It is also difficult as a chicken pox sufferer may already be infectious before there are obvious signs.

Q:- My Rheumatologist has prescribed Hydroxychloroquine. It is causing stomach upset. Will taking the brand name Plaquenil result in less stomach upset?

A:- Hydroxychloroquine and Plaquenil are one and the same drug, so you are likely to have the same reaction with Plaquenil. In some cases stopping the drug for a few days and then re-starting more gradually may stop the gastric upset. However, I would advise you to discuss this with your GP, and if you continue to have gastric problems I would advise you to inform your rheumatologist.

Q:- Is Lupus technically a disability? Do people with lupus get discounts on travel and prescriptions?

A:- The Equality Act 2010 defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.

Lupus affects patients in many different ways and while some patients with lupus would be classed as having a disability under the Equality Act, many would not. So for example a patient who has mild skin lupus that does not affect their day to day life in any way would not meet this definition. Similarly a patient with systemic lupus who is in complete remission and asymptomatic and who is able to live a normal life would also not be classed as having a disability.

In contrast a patient with lupus who had suffered severe disease that left them substantially unable to carry out their normal activities of daily living would certainly be classed as having a disability. Thus patients who have had strokes leaving them paralysed, or severe musculoskeletal disease that limited their mobility or heart or lung disease that meant that they were too breathless to perform their daily activities would all meet the definition of having a disability. Many patients are severely fatigued and if this limits their day to day activities this would classify them as having a disability. Thus having lupus itself does not always mean that a patient will be classed as having a disability – it is how the lupus has affected the patient that it should be taken into account. This is important when patients with lupus apply for benefits or when their clinicians compile medical reports on their behalf. When attending hospital appointments it may be possible to claim back the costs of travelling to the hospital and this will depend on the local policies of the individual hospital.

Q:- I have discoid lupus but am experiencing fatigue and aches & pains that are symptoms of systemic lupus. Can discoid lupus develop into systemic lupus?

A:- It is not uncommon for Discoid lupus patients to suffer fatigue and joint pains which are commonly associated with systemic disease at some point during the course of their illness. However, only about 5% of Discoid patients go on to develop SLE.

If these symptoms persist a patient would be advised to have their blood tests checked for evidence of systemic disease.

Q:- I was wondering if because I have discoid Lupus if this could weaken my immune system, It just seems like since I have been diagnosed I seem to pick up every little coughs and cold that’s going around but I'm not sure if this is related.

A:- Discoid Lupus patients are less likely to have a compromised immune system as this condition generally only affects the skin. Occasionally through the course of the illness patients may develop systemic symptoms such as joint pains, fatigue and 'flu-like symptoms, but these tend to be transient. Patients with systemic lupus have a compromised immune system, and if their disease is active, or if they are taking immunosuppressant therapy, they may be more at risk of infection. SLE patients also tend to run a low white blood count. White blood cells are responsible for defending the body from infection.

Q:- What would be the effect of using Prednisolone for a long time?

A:- Patients are not advised to stay on Prednisolone for long periods of time. It is effectively used to reduce inflammation and swelling in the short term. However, this drug is only effective in suppressing disease. It does not cure it.

In the case of Prednisolone, the longer a patient takes it, and the higher the dose, the more likely the risk of side-effects. However, very often steroids are necessary to control the disease, so it may be a question of weighing up the risks and benefits of remaining on them. Patients are generally advised to be on as small a dose as possible. The doctors try to keep the dose as low as possible below 7.5mgms daily.

The most common side-effects are weight gain, a round face, thinning of the bones (osteoporosis), easy bruising, indigestion, stomach pains, stretch marks, and thinning skin. Muscle weakness, and cataracts may occur. In patients who are on high doses of Prednisolone, mood swings and insomnia may occur. Glaucoma, diabetes and epilepsy can all be exacerbated by long term use of steroids.

To minimise the risk of osteoporosis, all patients, whilst taking Prednisolone, should be taking calcium supplements. A bone density scan will reveal whether the patient has thinning bones. Regular exercise reduces the risk of osteoporosis. Patients are advised not to smoke, and to keep alcohol consumption to the minimum.

Q:- What nutritional vitamin supplements should be taken for SLE?

A:- Many herbs can interfere with prescription drugs, or can be dangerous if taken in large quantities. It is important that you consult your GP before taking alternative herbal therapy, or dietary supplement. Very few long-term research programmes have been conducted into the efficacy of these herbal alternatives, and physicians are reluctant to recommend any specific remedy, particularly as lupus symptoms vary in the individual.

Another difficulty with some complementary therapies is that the exact dose of the active ingredient cannot be predicted or guaranteed. Complementary therapies may therefore add an additional complicating factor that your doctor needs to be aware of, so please check with your doctor before taking any supplements at all. Cod Liver Oil and vitamin E are taken by some patients. However, they should not be taken in conjunction with anticoagulants such as Warfarin.

The general advice given to patients is to have a broad, general and nutritious diet, with a slightly increased intake of oily fish such as, mackerel, salmon and sardines, and perhaps a little less red meat. Alfalfa sprouts are to be avoided, as they are thought that they may exacerbate a 'flare' of lupus. It is advisable to keep within the recommended calorie intake which is roughly 1,900 calories per day for women and 2,500 calories per day for men. These figures are based on adults with a sedentary lifestyle wishing to maintain their current weight.

The Lupus Research Team at St. Thomas’ Hospital conducted a pilot study to test the effects of a standard calorie controlled diet that is usually recommended from the dieticians department, compared to the South Beach (low glycaemic index) diet.

The principle of the low GI diet is that certain foods increase the blood sugar very rapidly as these sugar containing foods are easily digested. Thus low GI foods would include proteins such as fish and meat as well as vegetables and certain fruits such as strawberries. High GI foods would include any foods containing refined sugars such as biscuits, many breakfast cereals and sweets. Paradoxically dark chocolate which contains very little sugar may be taken in moderation. By keeping to low GI foods, weight loss may be achieved. Very few side-effects were experienced by patients on these diets. One striking advantage of both diets was that severe tiredness improved significantly with the weight loss. Keeping to a healthy weight will also minimise the risk to cardivascular health that is increasingly important in lupus patients.

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