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News and Opinions about MS, Health & Disability

New trial to see if older people with MS could stop use of DMTs

A clinical study is to look at whether older people with MS can stop using disease modifying therapies (DMTs). The proposal has left me in two minds.

The idea seems to be that those who have not any relapses for a few years could quit the treatment.

I will be 65 this week and so have reached the ‘older people’ category. However, despite receiving a diagnosis of MS 15½ years ago, I have never taken any of the DMTs.

So, on one hand, I welcome the opportunity for anyone to give up DMTs, with their associated side effects. But, on the other, I am not happy that this could possibly be a step on the way to saying that such treatments do not benefit older people.

DMTs

John R Corboy MD, professor of neurology (pic: University of Colerado).

The study, that is now enrolling people with progressive or relapsing multiple sclerosis, was unveiled at the recent joint ECTRIMS-ACTRIMS meeting in Paris. It was part of a presentation made by John Corboy, of the University of Colorado School of Medicine. He believes older MS patients could end their treatment.

DMTs: Relapses more common in younger people

His presentation, “Disease modifying therapy in the aging multiple sclerosis patient”, highlighted data that shows MS relapses are more common in younger people, and are less frequent as they get older.

This is supported by the fact that young people show plenty of inflammatory lesions, while those age 50 or older often have no signs of inflammation. I can identify with that as my last MRI scan, a year ago, showed my lesions were all inactive.

Corbyn said that clinical trials show better effects of DMT use in the young, especially those aged under 40, but that most trials have included those older than 55. That being the case, existing data does suggest that older patients with an extended period of no disease activity could stop taking DMTs.

The new study, called DISCOMS (NCT03073603), is recruitng up to 300 patients, at 15 clinics across the US. Patients need to be at least 55, and be free of relapses and MRI changes for at least five years while on any of the 14 approved DMTs. You can find out more about enrollment here.

The trial is run until 2021, but the first data is expected to be available a year or so earlier.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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HSCT is superior to DMTs say Swedish researchers

At last, independent researchers have endorsed autologous hematopoietic stem cell tranplantation (HSCT) as a treatment of choice for multiple sclerosis.

Well, treatment for relapsing MS, anyway.

The study “Autologous haematopoietic stem cell transplantation for neurological diseases” was published in the Journal of Neurology, Neurosurgery & Psychiatry. In it, Swedish researchers, from Uppsala University, say autologous HSCT is superior to currently approved disease modifying therapies (DMTs).

hsctOn top of that, they say, in the study, that procedure’s safety profile has improved, and is now just as good as approved medications.

So far, so good. But, from my point of view, it is only a start. The report says that the benefits of stem cell transplants for patients with progressive MS is moderate at best.

I don’t agree with the suggestion that attempts to use HSCT to treat people with progressive MS should be limited to clinical trials. The treatment is more effective with the relapsing form, but it is also successful in tackling the progressive types.

Now, we need HSCT to be approved for treating MS by the FDA and regulatory bodies around the world. We have been waiting long enough.

No evidence of disease activity (NEDA) is now a serious indicator in studies of MS therapies. It is a comprehensive measure that takes into account disease activity in MRI scans, the presence of relapses and disability progression.

HSCT scores better at NEDA

A number of studies showed that 68 to 70 percent of patients maintained NEDA four to five years after HSCT. In comparison, of DMT patients treated at Boston’s Brigham and Women’s Hospital, only 7.9 percent had NEDA at seven years.

Meanwhile, in clinical trials of newer drugs such as Tysabri (natalizumab) or Lemtrada (alemtuzumab), only 32 to 39 percent of patients maintained NEDA at two years.

Researchers noted that clinical trials or other studies of Tysabri or Tecfidera (dimethyl fumarate) found no improvements in patients’ health-related quality of life.

Meanwhile, one study of transplanted MS patients showed an improvement of nearly four times what is considered as a clinically meaningful improvement at two years. Improvements were in both physical and mental health.

So, HCST:

  • is superior to DMTs
  • is as safe as DMTs
  • achieves ‘no evidence of disease activity’ with more people and for longer than other therapies

What more do we need to know?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Cure for multiple sclerosis: Are we close?

I keep reading about potential cures for multiple sclerosis but how lose are we? Let us take a look at the situation.

Researchers and the medical profession already know that MS is a complicated disease with numerous symptoms. Also, they know that that it is not completely understood. That being the case, it is difficult to see how a cure may be imminent.

But let’s look at the current situation with an open mind.

Recently approved

On the drug front, there are numerous disease-modifying therapies (DMTs) that are used to slow the course of the disease. The US Food and Drug Administration (FDA) has approved 15 such DMTs mostly for use in treating people with relapsing MS.

The FDA most recently approved ocrelizumab Ocrevus (brand name Ocrevus), at the end of March. This has been given the green light for treating both relapsing and primary progressive forms of the illness.

Ocrelizumab is an immunosuppressant that targets B cells, believed to have a key part in the destruction of myelin.

Patients receiving ocrelizumab also had fewer brain lesions and less loss of brain volume than the placebo group.

What’s ahead

Scientists can take 10 to 15 years to develop new medicines to the stage where they have approval of regulatory authorities to being commercially available. Clinical trials are an important part of his development process.

Some prospective therapies now in the pipeline are:

Laquinimod is an experimental drug in phase III trials for relapsing MS, and phase II

Autologous hematopoietic stem cell transplantation (HSCT or AHSCT) “reboots” the immune system in people with all types of MS. HSCT can halt the progress of the disease but does not repair damage already done.

MD1003 is high-dose biotin. It is being tested in phase III trials for both primary and secondary progressive MS and may promote myelin repair.

Siponimod is being developed for use in SPMS.

This all goes to show that research towards new MS treatments is moving fast. These new therapies include: resistance training, antioxidants, and gut microbes.

But is a cure for MS imminent?

Avures much as I wish it is just around the corner, the answer has to be NO.

DMTs help relieve symptoms, reduce disease progression and so on – but they are not cures. We maybe at a point where we are making significant progress to hope for a breakthrough soon, but nothing more.

It is a shame but I really cannot be any more positive than that.

Speaking personally, I have not yet found a DMT that I would be prepared to take. But that’s my choice, not my recommendation. As there is no cure yet, I am convinced that HSCT is the next best that is currently available.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Why are DMTs – Drugs to treat MS – Resisted by so Many?

Many people with multiple sclerosis await the launch of each new disease modifying therapy (DMT), hoping it will bring some improvement.

Meanwhile, a significant number of those in the same situation seem to ignore a new drug and carry on regardless. But why?

dmts

Different DMTs for MS can be infusions, injectables, or tablets.

Well, there are a number of reasons; let’s take a look at a few of them:

  • The newly diagnosed often delay starting treatment because they are in denial or just decide to ‘wait and see’ how the disease develops.
  • Very many of us dislike taking medications of any sort, for any ailment.
  • Others say ‘no’ after researching possible side effects before they decide that they may be riskier than the disease itself.
  • Some have a type of MS for which DMTs have little or no benefit.

Of course, there are other reasons too, such as costs, and I am not decrying those.

I fully understand the ‘wait and see’ approach, especially at diagnosis, when symptoms may not be too bad. But research tells us that it is one of the worst choices that can be made. And that is equally true of clinically isolated syndrome (CIS) that can lead to MS.

DMTs: Better to start treatments early

Healthline.com explains: “Experts recommend starting one of the DMTs approved by the Food and Drug Administration as soon as a diagnosis is made. A study published in the Journal of Neuroscience Nursing, found that patients with MS or CIS benefit from starting treatment the first time they experience an event suggestive of MS.”

It continues: “Other research has found that delays in treatment, even in those with CIS, may result in more severe disability and a poorer response to treatment with DMTs later on.”

I think most of us resist taking ‘unnecessary’ medications and there is nothing wrong with that. It’s just a case of recognising, in consultation with your doctor, which treatments are needed and which aren’t.

Now, let us turn to the vexed issue of side effects. All drugs, not just ones to treat MS, have their own list of both common and rare side effects. I recommend you discuss this with your doctor, to ensure the benefits are worth any risk. The ultimate decision, however, is yours; it is your body.

Not every type of MS responds to every DMT. Most are suitable for the relapsing form of the disease where they work to prevent relapses. Relapsing patients who go on to develop Secondary Progressive MS often continue with the same drugs. Currently, nothing exists that is more suitable without having too high a risk.

For primary progressive MS patients, there is a new DMD that is now approved as a treatment in the USA. The drug is ocrelizumab, brand name Ocrevus.

DMTs for me?

I am frequently asked what drugs I take for MS. The answer, perhaps strange but nevertheless true, is ‘none’. In fact, in the 15 years since diagnosis, I have never been offered any drug treatment. Yes, I have pills to treat various symptoms but nothing for MS itself.

To be fair, though, I do check out each new drug and its side effects and there isn’t one that I’d be happy to take. A serious side effect, death, may be rare but it is final.

Enough said!

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, who has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. Diagnosed with MS in 2002, he continued to work until mobility problems made him retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective. Besides that, he is a keen advocate on mobility and accessibility issues.

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