I was recently offered the opportunity to change from the medicine that I have been on for nearly 5 years, to one that I admit to not know too much about. it got me thinking that it would be useful to write something about disease modifying drugs, and perhaps the exercise would help me to decide what I am going to do about my change of medicine.
So in the past decade there has been a massive explosion in the therapies for MS. Actually, I think that there are quite possibly more DMDs now that have been licenced to reduce disease progression in MS than ever before. Honestly, I think that we are in an era where we are lucky because the treatments available are far more effective now than they were in the past at treating both the disease and acute symptoms.
One of the major remaining problems with all of the available drugs is the potential risks and side effects. Anyone going on to a DMD needs to weigh up the risk and benefit – and many people choose not to take any drugs on the basis that some of these drugs carry too high a risk for them to want to take them.
Some of the friends that I have have decided to adopt an approach where they manage their MS using diet and exercise alone. Whilst this would totally not suit my own needs, this works for them and their lifestyle. I think that for me, I choose to take medicine and adopt a healthier lifestyle in addition.
So what types of options do we have for MS?
Medicine for relapses such as steroids are available to reduce the amount of time that an MSer is suffering, and has been said to shorten the time to recover. I am not personally fond of steroids as I find that they have a massive effect on my body overall (which is due to the suppression of the immune system) Although steroids have been found to be effective in the treatment of relapses, there has been a lot of research which shows that they aren’t too good at treating the overall course of the disease.
There are currently around 12/13 drugs which are regularly available (and licensed) for the treatment of MS, and new ones are coming out all of the time. All of the licensed drugs have shown in clinical trial to be effective in reducing the rate of relapses for people with RRMS. As well as showing that they are able to reduce the number of relapses, they are also able to reduce the rate of progression. One of the major benefits to the identification of such effective drugs is that a person with MS in the modern era (such as myself) is much less likely to progress to such limiting disability as someone who was diagnosed about two decades ago. They have indicated that the course of disease in MS is likely changing and people are now progressing far more slowly, and the burden of disease is less great on the sufferer, the economy and the health service as a result.
So, why have a told you all of this? Well, when my diagnosis came through I was in pretty bad shape. Despite having had MS since I was about 16, they didnt manage to diagnose me until I was about 25. By this time, things were progressing pretty quickly and I was subsequently diagnoses with Rapidly Evolving Severe Relapse remitting MS. I was put on to Tysabri (nataluzimab) as my first and only treatment. I think I have been on this for about 5 years now…
So Tysabri is a monthly IV that I go to hospital for, and is pretty potent. It works by targeting and stopping the immune cells from being able to get into the brain. A study that was done showed that people on the placebo had approximately 10 new lesions, whilst people on the tysabri had only one new lesion in the time of the study. To date, it is one of the most effective drugs for severe forms of MS.
Genuinely, I have had a good run on tysabri – and it has few side effects in all for me but it can have some pretty serious side effects though. Some people on the drug have suffered from something called progressive multifocal leukoencephalopathy (PML). This is like a super nasty form of MS, and progressive really quickly. Before the time when this appeared in MS patients on tysabri, it was only ever seen in patients with AIDs.
Although tysabri is widely used, there are lots of information about the potential risks, and now there is a lot of knowledge about the fatal complication of PML. Whenever I go to the hospital, I have tests for JC Virus – the virus responsible for the progression to get PML in combination with the drug. Each time I get tested, the risk is assessed against my titre of antibody for JC virus. For someone who is negative for the JC virus – I am sure that their risk of PML occurring is something in the order of around 1/10,000. For me at the moment, having had the medicine for several years, it is about 1/750 or something similar.
When I went for my last infusion, I was approached about doing a study because since I started the drug my antibody level has not actually changed. I have always had a low amount (sometimes going between positive JC and negative JC). For patients with negative JC, they are advised that their risk of PML never increases. This would mean that I could be being told that my risk of PML, and an increased chance of death from my DMD unnecessarily. For now, I don’t know too much about the study, so I will keep you informed!!
Anyway – I have gone on for far too long. I will write my blog next week about the new medication option and why/why not I may want to change! Sorry guys!