Topic / Blog

DMT or not to be?

Are you at a crossroads and struggling to decide on which DMT to start, if any? If so, read through OMSer Rowan's advice and her journey to finding the right medication for her.

As the fifth step of the program, medication forms a vital part of our MS journey, even if you decide not to take any.

This is my venture into the world of MS medication, and how discovering the OMS program influenced me.

If you have RRMS, which DMT you choose is a very personal decision, and this is not intended to sway you towards one treatment option or another; more a reflection on the floundering helplessness a lot of us initially feel, and the power we can find by gaining some control over our futures.

As someone with ‘very highly active RRMS’, I was lucky, if you can call it that, to be given the choice of virtually all DMTs on the market. This was explained to me at my first consultation with my neurologist. This was 9 months after my symptoms, so I had a fair idea of how active my MS was. This choice was a blessing and a curse, as I was overwhelmed by the impossible decision I was faced with. But how wonderful to be in this position, thinking back just 20 years when there were virtually no medications available.

Making a decision 

Choosing a DMT was a decision I ultimately made by myself, taking into account advice from my family, friends and healthcare professionals who were all there to support me. There is also plenty of support online, through forums and blogs on websites like shift.ms, MS Trust, MS Society, and of course OMS. Just be aware that forums are individual’s experiences, without an evidence base, so while the accounts are valid for that individual, it does not mean that it will be the right path for you.

I received advice from the whole spectrum; my consultant recommended the strongest DMT with 70% relapse reduction rate, aiming to prevent damage before it occurs. Some family suggested a middle of the road tablet, providing a 50% relapse reduction rate, with fewer side effects. At the other end of the spectrum, other family were erring on the side of caution, recommending a tried and tested injection, balancing this with a lower relapse reduction rate of 30%. I quickly got the list down to three options, based on the side effects and what would fit with my lifestyle. I then spent a good month trying to make this seemingly impossible choice.

I was able to estimate the average of 1 relapse a year for RRMS, over 20 years, means that the difference between the highest and lowest effective medication could prevent between 6 and 14 relapses by the time I’m 45. Only for my MS, it would be more like between 18 and 42 relapses.

I also believed at this time that relapses were as debilitating as my relapses had been thus far. Having lived with MS for nearly 2 years, I know now that a relapse can be minor, but also that damage has a compounding effect. Oh for a crystal ball. 

Once I had made my mind up about one medication, I read something else and the whole situation was up in the air again.

I eventually decided on the DMT with the highest effect, prepared to take the extensive list of potential side effects, to limit the progression I had resigned myself to developing.

Finding OMS

Then I found OMS. I was torn now, as to whether to stick with my decision to hit it hard, and do ‘whatever it takes’, or to take a leap of faith with the program and take a safer medication.

Finally, the decision was made. I felt such a sense of relief. All the turmoil I experienced leading up to this decision ebbed away, and I was left with a sense of calm, of power and strength. I was taking control over my future.

Going for a middle ground, I decided to take a medication that reduced relapse rate by 50%, while I commenced the OMS program and gave it the recommended 3-5 years to stabilise my MS. I had every intention of stopping medication at this point. However, having just passed my first year on this medication with no complications, and a period of stability with no day-to-day symptoms, I would like to stay on the DMT unless anything changes. Why fix what’s not broken, and risk a rebound relapse, after all.

On a day-to-day basis, I actually like to take a tablet twice a day, as a visual reminder that I am actively doing something to change my future. I also appreciate that I can stop it at any time to reverse the effects, rather than some of the infusions which are irreversible. You also need to decide whether your lifestyle allows for remembering medication with all the other juggling balls in your life. Yet another thing to consider. 

My advice to you, would be to take your time in making the decision, and to be completely sure before you decide. Take the advice of your MS team and of your support network, but ultimately you need to be the one to make an informed decision. Read everything you can about the options available to you, and have faith in OMS. No decision will be right or wrong, if you go in informed and with an open mind.

Medication
Hide commentsShow comments

dr dermot o'leary (not verified)

You wonder what to do about DMTs
I am a doctor trained as a neurologist. I diagnosed MS myself 20 years ago. If I were to diagnose it today, knowing what I now know or if I were at the early stages of relapsing remitting MS I am very clear on what I would now do.
I would adopt very energetically the essence of the OMS programme. A whole food (esp. fish), gluten and dairy free diet, Vitamin D, meditation and an enthusiastic exercise programme. I did not, then 20 years ago, take on any medication, and despite all the advances I would not if I were at the beginning of the Ms journey take it on now. There are benefits but taken on balance, relative to the side effects, they are small.
As a Doctor who has conducted research I also know that there is another factor which is rarely mentioned in the literature. That is what I shall call 'medicalization'. It is good to have the advice of a caring and competent neurologist. But there is a great deal to be gained from remaining otherwise free of the medical system. DMT’S mean frequent OPD and Inpatient events, tests, drugs to mitigate side effects and multiple MRIs. All of these are administered by caring and well meaning professionals but they inevitably imprint upon your mind that you are ill. It is crucial in living the full life you can live, as a person at any level of MS, that you remain free from the sick person role and experience.
My recommendation would be to explain your understanding to your neurologist and get their help to get off DMTs. Follow OMS and live the full life we can live with MS.

Lucy-OMS

Thank you for your comments, you make some very valid points.

At OMS we passionately believe that empowering people with clear and unbiased information allows them to make the healthy lifestyle choices that offers them the very best chance of living well with MS, and not spending their lives in the “sick role”. That said, we also fully support those OMSers who feel that using medication is the right choice for them as part of an holistic care program.

It is certainly fair to say that 20 years ago the evidence for the long-term effectiveness of the DMDs was at best unknown, but now it is becoming clear that early intervention in MS (whether that be through lifestyle modification, use of medication, or both) can alter the trajectory of the condition, and offer them the very real prospect of live long good health.

Some people will feel that the addition of a DMD will maximise their odds of a good outcome, and are willing to accept the side effect profile and monitoring involved.

Of course they must also be mindful of the potential for medicalisation, and of the “nocebo” effect. Being told that one’s only hope lies in the traditional medical treatments, and that “there is no evidence for diet in MS” has the very real potential to do harm and completely disempower.

Whilst medication should never be seen as a replacement for the vital role that lifestyle plays in the management of MS, we should always support those who make an informed personal choice on the use of a DMD.