Treatment - Some commonly used Medicines
Research carried out at The University of Birmingham Medical School into vasculitis has shown that damage to organs can occur early on in the course of disease. Therefore, in the beginning, aggressive treatment is used in the short term that is directed towards trying to switch off the mechanisms that are causing the inflammation. Then a maintenance therapy will be started, which often overlaps for a while with the initial treatment given. This has to be continued for a long period of time, to allow healing to take place and prevent flares recurring.
Drug regimes are prescribed according to the severity of presenting symptoms. For example, if your main problems are localised to the skin, you may be treated with mild therapy or low dose steroids. But if you present with kidney problems, a high dose of cyclophosphamide will usually be started.
Early, aggressive treatment has improved the course of this disease. Unfortunately, it needs to be given when the patient is feeling at their worst. So, not only do they feel poorly from the effects of the disease, but also they have to cope with a treatment that may make them feel (temporarily) more ill than the disease itself. This is like many forms of cancer therapy.
The following is a list of commonly used drugs that may be given either in hospital or as an outpatient: Cyclophosphamide
This is a powerful but very effective drug. It is the drug of choice for the aggressive treatment that is needed to bring about a remission. How it works is not entirely clear, but it is known that it damages the cell's DNA and interferes with the cell's ability to multiply in some way.
It may be given by a drip or in the form of tablets depending on what the individual needs. Side effects are normally related to the dose that is given, i.e. the higher the dose, the more likely there will be some side effects. However, as everyone reacts differently, it is wise to take things on an individual basis.
Drugs are routinely given to counteract the known common side effects of cyclophosphamide. For example, bladder-protecting drugs are given to counteract the irritating nature of this drug on the bladder. It is therefore also important to drink at least 3 litres of fluid per day and to pass urine often, in order to keep the bladder healthy. However, your doctor may advise you to drink less than this if the kidneys are not working very well.
Sickness is another commonly reported side effect; so anti-sickness tablets are routinely given to prevent this from happening. Hair loss tends to occur when higher doses of the drug are given. This can be very distressing at a time when your self-esteem is most probably low anyway. However, it usually grows back after the high dose treatment is stopped. Also, the NHS has a good wig service and their products actually look like real hair!
Whilst taking cyclophosphamide it is advisable to use effective contraception. This is because it may cause damage to the unborn child. Also, some patients may become less fertile (or infertile). The risks of infertility increase with age, number of treatments and pre-existing disease. However, all patients should have the opportunity to discuss issues about fertility and contraception before treatment is started.
For those who may be at risk from infertility and would like further information regarding what services are available, the Assisted Conception Unit has produced a helpful booklet. The booklet also contains many useful addresses of related patient support organisations. (NB. It is not possible at the moment to store unfertilised eggs. Eggs have to be artificially fertilised before they can be frozen.) Males at risk from infertility should consider sperm storage.