SBS Insight Program on living with MS - MS Research Australia

SBS Insight Program on living with MS

21 August, 2019

On the SBS Insight program last night (20th August), the focus of the discussion was how people live with and manage their multiple sclerosis (MS). Professor Bruce Taylor, a Neurologist and researcher from the Menzies Institute for Medical Research and Associate Professor Todd Hardy, a Neurologist and researcher from the University of Sydney were consulted and participated in the program.  The program touched on a number of topics such as the different treatments available for MS, including Autologous Haematopoietic Stem Cell Transplantation (AHSCT) and how different women with MS had approached pregnancy and breastfeeding.

In addition to the information discussed on the program, see link here sbs.com.au/ondemand/video/1582628419657/multiple-sclerosis, MS Research Australia’s Head of Research Dr Julia Morahan has detailed a summary of the topics and further information including relevant links to assist with any questions you may have.

What is AHSCT?

Autologous Haematopoietic Stem Cell Transplantation (AHSCT) aims to reset the immune system using chemotherapy to remove most or all the immune cells and then the individual’s own blood stem cells are reinfused to rebuild the immune system. It has been routinely used for the treatment of blood cancers for many years and is under investigation as a treatment for MS both in Australia and internationally.

Observational clinical trials have shown good results for many people with relapsing MS treated with AHSCT, including those from the recent AHSCT observational trial in Sydney. However, it is also a treatment with high risks and research has shown that it is not effective or suitable for everyone with MS.

There is no evidence to date to suggest that AHSCT can repair nerve fibres and the international studies suggest that there is unlikely to be reversal of more longstanding disability following AHSCT. International studies have suggested that some people with MS may experience some reversal of disability following AHSCT, however, this is thought to be primarily as a result of normal repair of myelin around intact nerves that can occur once the inflammatory attack in the brain and spinal cord is suppressed.

More information about AHSCT for MS and a summary of the outcomes of clinical trials

Access to AHSCT in Australia and Overseas

In Australia, AHSCT is available to those who are most likely to benefit and those who have the highest likelihood of success. Research shows that these people are younger people with MS, with highly active MS on MRI scans, where other approved therapies have failed. In these cases, AHSCT is carried out under an observational trial setting. Access to these trials require a referral from a neurologist and patients need to fit the study entry criteria for each trial site.

Some Australians, such as those featured on the program, have travelled overseas for AHSCT for their MS as they are not currently eligible for the treatment in Australia, and often at considerable personal cost. Outcomes for these individuals, as with everyone with MS, can be variable. It is important that the potential risks and benefits of AHSCT are carefully considered in relation to each individual’s personal circumstances in consultation with their health care providers before embarking on any treatment.

MS Research Australia understands and fully acknowledges that people with MS will wish to explore all potential treatment avenues. AHSCT does have a role to play in the range of treatments available to treat MS, however, it is very unlikely to be right for everyone. Its potential risks and benefits must be carefully considered in relation to each individual’s personal circumstances in consultation with their medical team.

More information on access to AHSCT in Australia

Other treatment options for MS

Australia is one of the few countries in the world to have access to 12 different disease-modifying therapies for the most common form of MS, relapsing remitting MS, all of which are subsidised via the Pharmaceutical Benefits Scheme (PBS). At the moment, there is only one treatment available for progressive MS, but research is ongoing and there are more in the pipeline. MS medications can be tablets or capsules, injections or infusions. Newer generation treatments for MS are highly effective in the majority of people with MS but do not work for everyone.

More information about the treatments currently available in Australia

Pregnancy in MS

MS is a disease that predominantly affects young women and is often diagnosed at a time when women are considering having children. The program also profiled women with MS who had made the decision to not have children. While this is a highly personal decision for all women with many factors to consider, women with MS must also consider the impact of their MS.

More information on pregnancy and MS

Does MS affect fertility?

There is no evidence that MS affects fertility, meaning the women who have MS have the same chance of having children as those without MS. Additionally, there is no additional risk to the pregnancy, and unless there are other reasons, having MS should not limit the birthing options or management of delivery.

How does pregnancy affect MS?

Pregnancy affects the course of MS in women with the disease. During pregnancy, particularly in the second and third trimester, there is a protective effect with relapse rates dropping up to 70% compared to levels before pregnancy. However, there is also an increased risk of having a relapse after the baby is born, with a relapse three times more likely in the 3-6 months immediately after birth. This is thought to be due to changes in the mother’s immune system that occur during pregnancy that lead to increased immune tolerance (the immune system is ‘calmer’ and more tolerant of ‘foreign’ cells), to ensure that the mother’s immune system does not attack the growing foetus.

More information on pregnancy in MS

Treating MS in pregnancy

Recent large scale research studies have looked at the use of disease-modifying therapies during pregnancy and the Association of British Neurologists have released detailed clinical guidelines for the treatment of MS in pregnancy. While some treatments cannot be used during pregnancy, and treatment is often stopped during pregnancy due to the natural fall in relapses, some treatments can be used during pregnancy and may be considered for those with active MS. It is important for women with MS who are considering or planning pregnancies to discuss their treatment options with their medical team.

More information about treating MS in pregnancy

Breastfeeding and MS

It has been difficult to determine the effect of breastfeeding on MS, with some research showing it may be beneficial and reduces relapses in women with MS while others have shown it has no effect. This is complicated by the fact that women who have more severe MS are less likely to breastfeed or breastfeed for shorter periods. Disease-modifying therapies are also often not recommended while breastfeeding, meaning some will make the choice to forgo breastfeeding in order to restart treatment, however, it is important to discuss your options with your treating neurologist to determine what the best choice is for your circumstances.

More information about breastfeeding in MS

The SBS Insight program has highlighted the variable nature of what it is like to live with and manage MS.

Early access to medications and a healthy lifestyle is enabling most people with MS to keep their symptoms managed, however for people with progressive MS, options are limited. MS Research Australia and the International Progressive MS Alliance are working hard to fast track research and additional medication options for people with progressive forms of MS.

MS affects everyone differently and not everyone with MS responds to medications in the same way. It is important to discuss all medication options with your medical team to determine which medication is suited to your personal circumstances.

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