From the National Magazine

The Future Looks Brighter

Dr Hazem Youssef, Locum Consultant Rheumatologist
Fife Rheumatic Diseases Unit, Cameron Hospital, Windygates, Fife

The recent years have witnessed several steps forward in the field of lupus, thanks to the ongoing research, dedicated scientists, supporting charities and mainly to lupus patients. All play a major role towards our better understanding of lupus despite the challenging nature of this disease. Undoubtedly this has been reflected in the way we practice and the more we know about this disease the more our practice will change to the better.

One of the old concepts is that lupus is always an aggressive disease that will require lifelong treatment with steroids or immunosuppressive drugs. It is now clear that lupus varies considerably from patient to patient and although some patients can have significant complications, not every lupus patient will have severe disease. Many patients can live a normal life with mild disease and no significant threat to their internal organs. Some patients may only suffer from fatigue, transient joint pains and occasional rashes. Even when the internal organs are affected, this is not always severe nor requires aggressive therapy in all patients. Therefore disease education remains an essential aspect of management and patients should know enough about their disease. This is obviously the role of the doctors at the rheumatology or the lupus clinics but we cannot, of course, underestimate the superb role of LUPUS UK in educating patients and raising the awareness among the public as well as the medical profession. We should also not forget the valuable and growing role of the lupus nurse in this aspect.

As a general rule, when steroids are required for treatment of any disease the duration must be kept to the minimum and the least effective dose should be used in order to keep the side effects to the minimum. In lupus, despite the significant benefits of steroids in controlling severe disease complications, there is however more risk from long term steroid use therefore the benefits must to be weighed against the possible side effects. A link between lupus and coronary heart disease and also peripheral vascular disease has been recently reported. Lupus is now considered to be a risk factor for ischaemic heart disease. This risk is increased with long term steroid use and therefore every effort is now made to restrict steroid use to patients with a severe flare or patients with organ-threatening disease. More recently there have been various reports on successful treatment of resistant lupus manifestations using much lower doses of steroids through adding some other medications called "steroid sparing agents". These drugs help in reducing the dose of steroids more effectively without disease flares.

Elevated levels of cholesterol and lipids are other risk factors for cardiovascular disease in lupus patients especially in those using steroids for a long time. Frequent monitoring of cholesterol and triglyceride levels is a useful recent recommendation in lupus patients given their risks for cardiovascular disease. Early detection and management of this problem is simple but can make such a difference to the outcome of the disease. Interestingly, there have been some speculations regarding a possible beneficial role for a group of lipid lowering agents called "statins" on the lupus disease process itself. Recent studies suggest that these drugs not only help in optimizing lipid levels but may also play a role in suppressing the lupus disease process itself.

The awareness and routine check for the antiphospholipid antibody (Hughes) syndrome in all patients with lupus has dramatically changed the outcome of the disease. Antiphospholipid antibody syndrome is one of the serious, though easily controllable disorders that can be associated with lupus. Simply, the body produces certain types of antibodies which are known to increase the tendency to blood clots with subsequent multiple complications such as strokes, deep vein thrombosis or recurrent miscarriages. One of the serious problems in the bones of the hip joint known to affect some patients during the course of their lupus is called "avascular necrosis" in which the bones suddenly collapse for an unknown reason causing severe pain and limitation. Until recently there was no known explanation to this condition and as to why it is more common in lupus. Although there are various explanations for this problem, it seems now that the most accepted theory in lupus patients is the interruption of blood supply to the bones by tiny blood clots caused by antiphospholipid antibodies. Now with the early detection and management of the antiphospholipid antibody syndrome all these complications of lupus can be prevented by a simple blood test. Recent data suggests that the effective treatment of the antiphospholipid antibody syndrome has also resulted in better control of some other associated problems such as migraines and hypertension in addition to prevention of blood clots.

Hydroxychloroquine is one of the most commonly prescribed medications for lupus with known remarkable benefits. This drug has proved effective in controlling various lupus symptoms such as fatigue, fevers, joint pains and joint inflammation and also chest pains arising from inflammation of the pleura (lung coverings). Given the recent concerns regarding the cardiovascular safety of long term anti-inflammatory drugs; antimalarials remain much safer to use for suppressing inflammation in lupus than most of the currently used anti-inflammatory drugs. Antimalarials are effective in reducing the number of lupus flares and are known to have a lipid-lowering effect which is certainly a great advantage to lupus patients. More importantly, they have a "steroid-sparing effect" which means patients on these drugs will require not only lower doses but less frequent courses of steroids as well. More recently, possible new benefits have been discovered for antimalarials in lupus. A recent study showed that patients receiving antimalarials had much less incidence of lung scarring and lung clots in comparison to patients not taking them.

For treating severe forms of renal lupus (lupus nephritis), recent data from European trials showed that much lower doses of cyclophosphamide (a strong immunosuppressive drug known to be very effective in treatment of lupus nephritis) are as effective as the standard high dose protocols but with fewer side effects. Some other drugs are now available for treatment of severe lupus nephritis with equal efficacy but again with much less side effects in comparison to cyclophosphamide.

Resistant lupus rash is one of the most troublesome problems to the patient and can be one of the puzzling lupus manifestations to the treating physician as well. This can sometimes prompt the use of high dose steroids to control the skin flare. The good news is that new local and systemic treatments have been used successfully in recent years to control resistant skin disease without the need for high dose steroids although the response to these treatments varies from one patient to the other and some of them can have significant side effects.

Until recently there were no known therapeutic options to prevent the development of congenital heart block (CHB) in babies of lupus women who have the "anti-Ro" antibody in their blood. This antibody, though does not exist in all lupus patients, is known to cause direct damage to the fetal heart. Data is now available to support the effectiveness of a class of proteins called immunoglobulins (IgG) in neutralizing these antibodies and therefore preventing the occurrence of this problem in babies of lupus mothers who have previously had babies with CHB. However, further trials are still needed in this field.

Research is ongoing on the use of biologics in lupus and the next few years will witness several steps forward in treating patients with severe lupus or when traditional treatments fail. Rituximab is an example; this promising biologic drug acts by depleting the cells responsible for producing the auto-antibodies (antibodies directed against the body's own tissues) causing inflammation and damage. Data suggests that this drug has been effective in controlling severe lupus complications and the next few years will reveal more about similar drugs.

There is some data on a possible relationship between lupus and vitamin D deficiency. Lupus patients are known to be at risk of vitamin D deficiency for various reasons such as the avoidance of exposure to the sun in photosensitive patients and the use of steroids. It is known that vitamin D deficiency can cause significant muscle pains, muscle weakness, bone aches and fatigue. These symptoms could be easily attributed to lupus despite the fact that the cause is different. Early detection and treatment with calcium and vitamin D supplements can result in significant improvement in these pains and save patients several side effects from the unnecessary use of anti-inflammatory medication. In Fife, we are about to start a research study to understand more about this problem and its consequences in lupus patients.

With all these new developments coming to light one would feel optimistic about the future of lupus. I tried to compare what we do now in terms of lupus management to what was done in the past. Looking at the history of lupus I found an interesting picture at the Wellcome Library, London; which showed how the disease was treated in 1904. At this time it was believed that exposing lupus patients to a strong light after emptying the exposed tissues of blood using a huge apparatus, would probably cure the lupus! Of course comparing this era to where we stand now and what might be soon available for treatment of lupus one would be confident to say that a good job has been done so far. However as the medical profession we still need to do better.

In my opinion lupus patients also have a job to do and some of you may need to do better. My general advice to all lupus patients can be summarized in the following points:

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