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?
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.
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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.