Call to use MS disease modifying therapies earlier

mriGreater use of MRI scanning provided basis for new advice.

Earlier provision of disease modifying therapies (DMTs) is now being advised for treatment of relapsing remitting multiple sclerosis.

This is part of a scientific consensus that changes the way treatment should be provided in the light of evidence that suggests that, rather than waiting to see whether more relapses occur, DMTs should be offered as close as possible to diagnosis, according to the MS Society in the UK

The change of approach is the result of the wider use of MRI scanning. This has provided evidence that when symptoms get better, the damage that MS causes often doesn’t stop. So even when someone with MS is not having a relapse, the disease may carry on attacking their body. This could lead to nerve damage that can’t be put right. Experts used to think that when a person with MS had a ‘relapse’ it meant symptoms appeared and/or quickly got worse and then went away or ‘remitted’. The evidence has changed what is understood about MS and how to treat it. Rather than waiting to see whether more relapses occur, DMTs should be offered as close as possible to diagnosis, before damage to the body has built up.

It is now known that early treatment improves long-term health and wellbeing by slowing down the build-up of irreversible damage and reducing the number of relapses people experience. However, the evidence doesn’t mean that starting treatment later will not have any benefits – it simply means ‘the earlier the better’.

The society says everyone with a relapsing form of MS should speak to their neurologist or MS professional about treatment options and make an active and informed choice about what is right for them.

For those who have a different form of MS, or aren’t sure what kind of MS they have, it’s still important to have an annual review with their neurologist although, in my experience, this is easier said than done. Anyone who doesn’t have a neurologist or MS specialist should visit their GP and request a referral.

The MS Society reached the new consensus with people affected by MS, neurologists, MS nurses, and the MS Trust. A meeting was held to consider the evidence about whether early treatment with DMTs improves long-term outcomes for people with MS. It was strongly agreed that the evidence confirms the importance of treating with DMTs as close to diagnosis as possible.

The recommendation follows the publication of new guidance from the Association of British Neurologists (ABN) and with support from Shift MS and MS Trust.

 

Time to Act – a consensus on early treatment

 

 

Opinions are divided over suitability of stem cell transplants as treatment for progressive MS

panorama Hallamshire%20web%20ready ms-trust-logo          From left: BBC programme Panorama, Royal Hallamshire Hospital; and Multiple Sclerosis Trust.

Great interest was stirred up, quite predictably, by Panorama programme Can you stop my Multiple Sclerosis? broadcast on January 20. That followed four patients with relapsing remitting MS as they underwent Autologous Haematopoietic Stem Cell Transplantation (AHCST or HCST) therapy at the Royal Hallamshire Hospital, in Yorkshire, UK. See my earlier blog post Can Multiple Sclerosis be stopped? Maybe some can at https://50shadesofsun.com/?p=1347 for more details.

Afterwards, some asked whether the stem cell treatment would also work for people with primary or secondary progressive MS.

Opinions seem divided. The people behind the treatment featured on BBC’s Panorama say: “Unfortunately the trials performed to date show that AHSCT does not work as well in primary and secondary progressive multiple sclerosis. In view of this data, at Sheffield Teaching Hospitals NHS Trust we are only treating people with relapsing remitting multiple sclerosis.”

However, writing on The MS Trust’s Facebook page, Gwen Higgs gave a different answer to that question. She wrote: “HSCT absolutely works for progressive MS! I had successful HSCT for my PPMS eighteen months ago.” Then Gwen added these links: https://www.facebook.com/groups/hsctppms/?ref=bookmarks and https://www.facebook.com/groups/ukhsct/?ref=bookmarks

On its website, the Multiple Sclerosis Trust was a little more cautious, saying that AHSCT could work for those with the progressive variants of the illness and published a blog by Jane of its Information Team. In that, she looks at some of the research so far, what’s possible now and where we might expect to see further progress in the future.

Answering the question ‘does AHSCT work for progressive MS?’, Jane says: “Sometimes it does, although it seems to work well only if your MS has a mix of progression with inflammatory activity.” Read more here: https://www.mstrust.org.uk/news/views-and-comments/could-stem-cell-therapy-work-progressive-ms

Looks like it is another case of ‘wait and see’!

Can Multiple Sclerosis be stopped? Maybe SOME can

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Last night on the UK’s BBC television, its leading documentary programme Panorama aired an episode entitled Can you stop my Multiple Sclerosis?

It followed four people with relapsing remitting MS as they were given bone marrow transplants that are more usually reserved for cancer patients. I say ‘transplant ‘ but the stem cells are taken from the individual patient, so there is no risk of rejection.

The treatment – known as an autologous haematopoietic stem cell transplant (HSCT) – aims to destroy the faulty immune system using chemotherapy. It is then rebuilt with stem cells harvested from the patient’s own blood. These cells are at such an early stage they’ve not developed the flaws that trigger MS.

Now, as my MS is not the relapsing remitting type, this treatment would not be right for me but, as I watched the programme, it was a delight to see some real progress being made treatment and remarkable improvement in the lives of those for whom it is suitable.  If a similar treatment could help me, would I take it? Once it had been proved to be safe, yes of course – wouldn’t you?

The treatment is being pioneered in the UK by two consultants at Yorkshire’s Royal Hallamshire Hospital where 20 patients have been treated so far. Neurologist Prof Basil Sharrack said: “To have a treatment which can potentially reverse disability is really a major achievement.”

Prof John Snowden, consultant haematologist, said: “The immune system is being reset or rebooted back to a time point before it caused MS. It’s clear we have made a big impact on patients’ lives, which is gratifying.”

The treatment involves intensive chemotherapy, so patients are warned that there are side-effects such as nausea and hair loss.

Prof Richard Burt, of Northwestern University, Chicago, carried out the first HSCT for MS in 1995. He said: “There has been resistance to this in the pharma and academic world. This is not a technology you can patent and we have achieved this without industry backing.”

A study published last year involving MS patients in Chicago, USA, showed significant reductions in neurological disability and, for some, the improvements persisted for at least four years – although there was no comparative control group. The outcome of a more detailed international trial – which will report in a couple of years – could determine whether the stem cell transplant becomes a standard NHS treatment for many MS patients.

A note of caution was later voiced by Dr Emma Gray, head of clinical trials at UK’s MS Society. She said: “Ongoing research suggests stem cell treatments such as HSCT could offer hope and it’s clear that in the cases highlighted by Panorama they’ve had a life-changing impact.

“However, trials have found that while HSCT may be able to stabilise or improve disability in some people with MS it may not be effective for all types of the condition.”

Dr Gray said people should be aware it was an “aggressive treatment that comes with significant risks”, but called for more research into HSCT so there could be greater understanding of its safety and long term effectiveness.