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Frequently asked questions

Q.  Should I not consider the pill as a contraceptive means? I have a problem in that other 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.  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.

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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.

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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.

For more details on this complex area see:https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85010/disability-definition.pdf

Patients with lupus are not entitled to free prescriptions or discounts on public transport unless they meet other criteria.   

For more details see: http://www.nhs.uk/nhsengland/healthcosts/pages/prescriptioncosts.aspx 

and for details on concessionary fares: http://www.londontravelwatch.org.uk/consumer_advice/money_saving_transport_tips

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.