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In NMOSD disabilities can accumulate with each acute attack including visual problems and/or paralysis of limbs. Progressive phase in which patients have gradual neurological decline between attacks is rare.
Management of NMOSD – NMOSD Treatment Algorithm
At present there is no cure for NMOSD so management focuses on the following key areas:
- Treating acute attacks/relapses
- Preventing relapses
- Treating the residual symptoms of the relapse
A high dose steroid, Methylprednisolone is usually given during a relapse. Steroids work by dampening the immune system and reducing inflammation around the site of nerve damage. They are given:
- Intravenously (through a vein) 1g daily for 5-7 days or
- Orally (taken by mouth) 500mg-2g daily for 5-7 days,
- In combination of intravenous and oral, followed by
- A tapering course of oral steroids over several months.
If steroids don’t help, what next?
When attacks progress or do not respond to corticosteroid treatment, Plasma Exchange is most frequently used or sometimes Intravenous Immunoglobulins may be given.
Plasma Exchange (PLEX).
This is a technique in which the blood is drawn out of the body and the plasma (which contains the antibodies) is separated. The blood is then returned back into the body with fresh plasma. However this will only remove the antibody from the blood – the white cells that make the antibody (B cells) are still present in the blood.
There is some evidence from controlled clinical trials that this helps patients with NMOSD.
In NMOSD disabilities are accumulated from each acute attack including visual problems and/or paralysis of limbs. So it makes sense to try and prevent relapses. Immunotherapies are powerful medicines that dampen down the activity of the body’s immune system. Drugs such as Prednisolone, Azathioprine, Methotrexate or Mycophenolate are used to allow reduction of steroids. All these treatments increase the risk of serious infections therefore blood will be monitored for full blood count, kidney and liver function.
Drugs commonly used in NMO
Oral Prednisolone tablets
Steroids are good immunosuppressants. After a diagnosis of NMO, oral steroids are used until other treatments are in place (Azathioprine for example can take 3-6 months to get to an effective level). In many patients relapses may occur even on gradual reduction of the steroids and they may need to continue on a low dose of steroids for longer periods. Often a maintenance dose is required.
Long-term treatment side effects including; weight gain, acne, indigestion, cataracts, osteoporosis (thinning of the bones), deterioration of the head of the thigh bone and diabetes. To reduce the side effects of Prednisolone other medication is taken such as an antacid Omeprazole or Lansoprazole, tablets for bone protection Alendronic acid and calcium supplements.
Azathioprine (also known as Immuran), Methotrexate and Mycophenolate (cellcept) have similar efficacy when it comes to suppressing the immune system. They all have side effects that are well understood, but need to be explained to you before you take the medication.
A certain percentage of patients will either not tolerate or relapse whilst on the above medications. If this happens, your doctor will consider a different medication to try and prevent relapses.
Other treatments available
These medications are considered to be “2nd line” treatments (i.e. used after trying the above medications). As with most medications, the more effective they are, the higher the risk of side effects. This is always a consideration when offering you medications.
This is an intravenous medication, treatment commences with 2 infusions 2 weeks apart, followed by a 6 month break until the next course which may consist of one or two infusions around 6-12 months later. It is from a family of drugs called “monoclonal antibodies” which are capable of depleting B-cells that are responsible for producing NMOSD antibodies. A version is of Rituximab called Truxima is being used widely in UK.
This is another well established chemotherapy that suppresses the immune system. There is very little evidence for its use in NMOSD.
Intravenous Immunoglobulins (IVIG) IVIG is a treatment made from donated blood that contains healthy antibodies. These are given to help stop the harmful antibodies damaging your nerves. IVIG is given directly into a vein. Most people need treatment once a day for around five days.
Complementary therapies can be used to target a specific physical, mental, emotional or spiritual problem, or as a preventative measure or purely for relaxation, and may increase your feeling of well-being. Reflexology, Massage, Reiki or Acupuncture may improve relaxation, sleep patterns, relieve pain or reduce stress and tension.
There is little research to show how effective many of these treatments may be.
Future Treatments for NMOSD
Eciluzimab trials are currently underway in the UK for the prevention of relapses in NMO. This is a five year trial and due to finish in late 2020.
Tociluzumab is being used in a small number of patients where relapses are occurring whilst they are on Rituximab infusions. It is also a monoclonal antibody which targets Interleukin-6 receptor and binds to them effectively blocking their role in the immune inflammatory response.
Over the last few years research has increased worldwide, particularly assessing immunology, radiology, causes and possible future treatments for NMOSD. However as the condition is so rare, it is difficult to organise clinical trials (and hence the need to identify as many people with NMOSD as possible).
Please speak to your local NMOSD team to get the most up to date information on trials and research.
What about stem cells?
Currently, research into stem cell treatment is only in its initial stages. Some researchers are hopeful that stem cell treatments may be helpful for people with NMOSD in the future.