Once you have started immunoglobulins, your response to treatment is assessed to find out how your condition is progressing (‘clinical benefit’). This might be at 3, 6 or 12 months, depending on your condition.
Evidence of clinical benefit is a requirement for ongoing access to government-funded immunoglobulin.
Immunoglobulin products are not always needed long term, and stopping immunoglobulin products may be an option for some people. For many conditions, doctors must regularly consider a trial of reducing or stopping immunoglobulin products. Requirements for each condition are set out in the Criteria for the Clinical Use of Immunoglobulins in Australia.
If you have an immune deficiency disorder
There are some cases where immune replacement therapy (IRT) may not be necessary. For example, around one in 10 people with common variable immunodeficiency (CVID) don’t need treatment with immunoglobulin products.
Some primary immune deficiencies don’t need treatment all the time. There is a type of CVID (known as possible CVID) where you may be able to stop treatment for a while.
However, most people with a primary immune deficiency disorder need ongoing treatment, known as immunoglobulin replacement therapy (IRT), to replace their missing immunoglobulins.
If you have a primary immune deficiency disorder, your treatment should not be interrupted once a diagnosis has been made, without discussion with your doctor. Your treatment will be reviewed regularly to make sure you are getting the right amount of immunoglobulin product to maintain normal levels and make sure you are free from infections.
Sometimes IRT is prescribed for people with a secondary immune deficiency (also called acquired), which may only before a limited time. Secondary immune deficiencies can happen when the immune system becomes weakened – for example, if your immune system has been damaged by medicines, such as some anti-cancer drugs. Once these are stopped, your immune system might start producing its own immunoglobulins again, so IRT won’t be needed anymore.
If your doctor thinks that you are at low risk of infection without using immunoglobulin products, they may suggest discontinuing treatment for a short period. This is usually recommended in the warmer months of the year when there is less chance of catching a winter cold or flu virus. You may be prescribed antibiotics during this time in case you get an infection.
Your doctor will ask you questions about recent infections, how severe they were, whether you had to go to hospital or take time off work. You will have to have some tests before considering a trial off immunoglobulin products. These may include measuring your immunoglobulin levels to make sure the amount of IgG in your blood is enough to work properly.
If you have signs or symptoms of frequent or severe infections after stopping immunoglobulin products, your doctor will usually restart your treatment as soon as possible.
If you have an inflammatory or autoimmune disorder
The length of treatment with immune modulation therapy (IMT) is different for each condition and each person too.
Sometimes, autoimmune or inflammatory conditions become inactive or go into remission – your condition may have improved slowly, and the inflammatory processes that caused the damage may have stopped.
The only way to tell if your condition has become inactive is to do a trial where immunoglobulin treatment is gradually reduced over time or even stopped. In some cases, symptoms don’t return at all. If medical tests show that your condition has been stable for some time, your doctor may consider trying this approach.
Your doctor will check how your condition has progressed by measuring things specific to your condition, using recommended scales. These are set out in the Criteria for the Clinical Use of Immunoglobulin in Australia. Depending on your condition, these may include things like measuring tingling or weakness in your hands, or how well you can walk up stairs.
If your symptoms return, and you responded to treatment with immunoglobulin products before, you may be able to start immunoglobulin products again. If this is not the case, your doctor may recommend changing to a different treatment that may be more effective for you.
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