Welcome to the third article in my series exploring the different MS hurdles I face in life. If you haven’t yet read the first two parts of the series I’ve written about my MS diagnosis and what it’s like to live with a chronic illness, please do take a look if you get the chance!
In this article I’m going to be writing about the different treatment options that were available to me to help reduce the frequency of my MS relapses and how I decided on what would be best for me and my MS.
Why I’m sharing this information
Most people who aren’t familiar with MS have no idea about the different treatment options available, the range of side effects they have or how hard it can be to decide on the best treatment option. I certainly fell into this category prior to my diagnosis so it was a real shock to the system when I realised just what would be required of me in trying to manage my condition.
I definitely reacted like a rabbit in the headlights when faced the difficult decision of having to select a treatment and I’ve had the range of emotions you will probably be experiencing right now. I remember feeling completely bombarded with too much information and choice, feeling really fearful of loads of potential serious side effects and terrified of making the wrong decision and my MS being uncontrolled, further costing me my health.
At the time I made my decisions, I was so frustrated by the lack of detailed information available from real people with MS and how the various treatments worked for them. I found a handful of blogs which mentioned how, as individuals, they were managing on a few treatments but it was really hard to get a broader picture of what to expect. This is my attempt to add my own input and contribute to that broader picture, hopefully to help others in the unenviable position of having to decide their MS treatment.
Please be aware though that I’m not providing advice on which treatment would be best for you to use! This is a completely personal choice, hopefully informed by the best medical advice possible. No one’s MS is the same and some people respond differently to the various treatments. This article is more about letting you know that you aren’t alone in your thoughts, feelings and dilemmas in selecting your treatment option by sharing my own experiences. I live in the UK and the treatments described were all approved by the NHS at the time of my diagnosis.
Which treatment options were available?
When I was first diagnosed with MS in 2015 the last thing I felt was lucky but looking back now I realise that it could have been worse! I was diagnosed with RMS (Relapsing Multiple Sclerosis) which means there were around 11 different DMDs (Disease Modifying Drugs) available to help reduce the progress of my disease. Just a few years ago, a lot of these treatment options, especially the more effective ones, hadn’t even been approved by the NHS and if I’d been diagnosed with PPMS (Primary Progressive Multiple Sclerosis) treatment options were non-existent and are only now possibly starting to offer some hope for sufferers in the near future.
Although making a decision on my treatment was tough, I’m really grateful that so many options were available to me.
Researching treatment options
The first thing I did when I received my MS diagnosis was head to the internet, which I’m sure everyone else does too! I hadn’t seen an MS nurse yet and the consultant who delivered my diagnosis had been very brief so I needed to fill in all of the gaps in my knowledge, get a better idea of what was in store for me and hopefully find a bit of reassurance that everything was going to be ok.
That’s when I first found out about many of the different treatments available and I think I went through every possible emotion as I uncovered more and more information and differing opinions surrounding each one. There were loads of confusing names for the treatments and many had more than one name, there were unpleasant things I might have to do; like inject myself or have infusions, there were some rare but VERY scary side-effects associated with some such as brain disease, an increased risk of cancer both of which had led to patients dying as a result and there were loads of more common side effects which would be difficult to manage too. There were people who were really struggling to find a treatment which worked for them, there were others who claimed to be having major success with a particular treatment and some who believed all treatments were poison and that they had cured their MS with a particular diet and lifestyle changes alone.
I didn’t even know at that point whether I would qualify for a treatment but I wasn’t recovering from my last BIG relapse and the thought of doing nothing and feeling powerless as MS further deteriorated my brain and quality of life was absolutely terrifying. Luckily, my consultant decided that as my RMS was active I was therefore suitable for most of the DMDs with the exception of two which were reserved for very active RMS.
Deciding on the best treatment for me
When the appointment to discuss these treatment options with my MS nurse arrived I fully expected her to recommend what she thought would be best. That didn’t happen, I was provided with facts and figures but no further guidance. I had to choose one myself, from around 9 different options and I really didn’t know which one to pick. What if I chose the wrong one and then had to live with the consequences? When it’s your life and the only one you have it’s not a decision you can take lightly, as you well know!
One resource suggested by my MS nurse which was a great help to me then was the MS decisions booklet and online decision aid by the MS Trust. This was a good way of easily comparing all of the features of the different treatments and I’d recommend it as priority reading for anyone trying to choose their DMD.
Some options I felt I could easily discount. There were a few injectable treatments (beta interferons and Copaxone), for example, which seemed only moderately effective at reducing relapses (around 30%) compared to others and I wanted to avoid having to inject myself if possible! I also wanted the option to have another child at some point (if I was well enough) and one of the tablet-based treatments (Aubagio) had to be stopped 2 years prior to trying to conceive so I felt that, for me, it was best avoided.
That left me with two options; a tablet taken twice a day, every day (Tecfidera) which was considered more effective at reducing relapses (around 50%) or an intravenous infusion in two treatment courses a year apart, which was described as highly effective at reducing relapses (around 70%). It was a hard decision, especially because both treatments had been approved fairly recently and broad-ranging information on the long-term effects of both was lacking when compared to some other treatments.
Both treatments had a considerable amount of potential side effects but following a lot of discussion with my MS nurse and my friends and family I opted for Tecfidera. Even though, based on the information I’d found, it was a less effective MS treatment I felt more comfortable facing the potential side effects of Tecfidera over Lemtrada. Tecfidera’s main side effects seemed to be possible hot flushes and stomach upset. I figured I would give it a try and if the side effects were too much I could always try Lemtrada then.
At the time I felt the risks associated with Lemtrada were too high for me to feel comfortable with; nearly one third of patients experience thyroid problems and rare side effects were a blood disorder, kidney problems and a possible increased risk of thyroid cancer. I was also informed by my MS nurse that taking Lemtrada may limit my access to other DMDs, such as Tysabri, in the future.
So I started to take Tecfidera, still hoping that I hadn’t make a mistake by choosing the less effective treatment and that another BIG relapse wasn’t waiting to pounce. I knew I’d always blame myself for my decision if it had but I never got to find out!
Deciding on the best treatment for more active RMS
Just two months into my Tecfidera treatment the results of a recent MRI (which was done prior to me starting Tecfidera) revealed that my MS was more active than previously thought so I was strongly advised to move to a more highly effective DMD. This meant reconsidering Lemtrada or selecting Tysabri, another treatment option which had now been made available to me due to my worsening condition.
I was in that hard place again of rolling the dice, hoping for the best and making a really tough decision on what would be the best treatment option. Basically, because I now had the added fear of knowing that my MS was actively destroying my brain a really fast pace, I had to guess at which treatment option would screw up my future the least either by not being effective enough at delaying my deterioration or through landing me with some very serious and life-changing side effects.
I’ve already explained my concerns with Lemtrada but when it came to Tysabri, which is taken as an infusion every 4 weeks, that treatment could also be a risky option. The more common side effects of some headaches and increased chance of infections didn’t seem too bad comparatively but the thought of getting PML through taking Tysabri (although it is extremely rare) was absolutely petrifying!
In case you’re not aware, PML is a brain infection which can lead to severe disability or death and although Tysabri is considered highly effective at reducing relapses (around 70%) what a gamble to take! You’re a lot more likely to develop PML if you have at some point been infected with the JC virus (which around 50% of people have), if not the risk of developing PML is very low.
Although I was scared of potentially developing PML, I started to look into Tysabri a bit more. I asked for a test to see if I had the JVC virus, knowing that the outcome would help me to make my decision. I waited anxiously for a week for the results, hoping for the best but fully expecting to be positive for the virus.
When I found out that I was JC virus negative it was the best news I’d had in ages and I felt like my decision had been made so much easier. I opted for Tysabri with a rough plan that if should become JC virus positive in the future or if a more effective treatment with less risky potential side effects became available I could switch to another treatment option then.
Did I make the right decision?
It’s hard to tell as who knows how I would have fared on an alternative treatment but I feel generally happy with the choice I made. The fear of PML hasn’t completely gone away but I know I’m on the treatment that I’m personally the most comfortable with, it feels right for me and as my wellbeing counts for a lot I don’t usually doubt my decision.
I’ve been taking Tysabri for almost a year now and I can’t believe it’s been that long already! The next article in my MS hurdles series will aim to explain my experiences with Tysabri, including the side effects I’ve had to manage and the impact the treatment has had on my MS progression and symptoms so far. Be sure to check it out if it’s a treatment option you’re considering!
Wishing you the best…
I’m sure there are plenty of people with MS struggling to decide on the best treatment for them. If you’re one of them I really hope you’ve benefited from the detailed account of my own thoughts, feelings, choices and experiences related to my treatment decisions explored within this article.
Just remember, I have been in a similar position to you, not too long ago, making comparisons, trying to collect as much detailed information on the realities of each treatment option as possible and making difficult, potentially life-changing decisions with a brain which wouldn’t fully cooperate due to high levels of brain fog and fatigue! This is my way of doing my bit to help anyone who finds themselves in the same difficult situation!
I wish you all the best in choosing a treatment option which works well and feels right for you.
What are your thoughts, feelings and experiences with selecting a treatment option? Have you had to make difficult choices too? If so, please let me know how you got on!
12 thoughts on “My MS hurdles- Part 3: Deciding on the best treatment option”
Thank you for sharing. I was diagnosed 2 months ago and, despite being JC Virus positive, started Tysabri treatments last week. I had two episodes that put me in the hospital within a month and 2 neurologists felt Tysabri was the best option. They aren’t nearly as worried about PML as I am (I cried during my treatment) because it’s only the first year. I met a woman online who is positive and has been on Tysabri for 5 years. She knows others who are positive and have been on it for 10 years. This helped ease some of my fears. I’ve completely changed my diet and am taking supplements that have helped others with MS. I’m hoping to go off of medication altogether because of my diet as others have. Especially Tysabri.
Thank you Tiffany for sharing your experiences too. I recently completely changed my diet as well and it seems to be going well so far. The worst thing about Tysabri for me (as I’m currently JC Virus negative) is how much it lowers my immune system, I seem to catch everything going which flares up my MS symptoms a lot. I’m wishing you all the best, let me know how you get on with Tysabri and your new diet!
While I don’t have MS, this seems like good insight for others who might be considering treatment options too. Will reshare on my social media channels!
Thank you so much, I really appreciate it!
It’s always nice to hear of the experiences of others who are going through similar strifes. I was diagnosed 7 years ago and only had access to injectable DMDs so ended up on Copaxone. I found injecting every day a real challenge and ended up with injection sites that were hard and painful. After one too many relapses I was given the choice of Tecfidera or Gilenya. I can tell you, after reading about all the side-effects, I wasn’t too keen on either I have been on Gilenya for just over a year now despite my liver taking a beating…rather the devil you know
Wishing you all the best. x
Thank you so much for your comment, I love hearing other people’s experiences too! I’m so glad there are more options available now, I know I’d really struggle with injecting myself. The side effects for me with Tecfidera were some flushing and an upset stomach at times, it was usually quite manageable but I know some people get it a lot worse. I’m glad Gilenya seems to be going well for you so far although I hope it starts treating your liver a bit better! Hopefully there are a few better treatments on the horizon, with less potential side effects that we can take advantage of soon! Wishing you the best too. xx
Great post, Natalie! This is such a great resource for people who are newly diagnosed. Deciding on a treatment can be a difficult decision, especially weighing the benefits vs. the scary side effects! When I was diagnosed over 14 years ago, I only had three options for treatment, and they were all injectables. I remember at the time it felt like such a big decision! Fast forward to today, and I feel blessed that we have many more options, but that also can be overwhelming. I am currently on Gilenya and for the most part am happy with the medication. I do have side effects, but I believe that the medication is doing its job.
I am happy to hear you are doing well on Tysabri, and for the most part are content with your treatment decision. If I wasn’t JCV+, I would definitely prefer to be on Tysabri. Thanks for sharing your experience! I’m excited for your upcoming post to hear about your Tysabri journey!
Thank you for your lovely comment! I really wanted to read detailed accounts of what others had experienced when I was newly diagnosed and struggling to decide on a treatment option so based this article on that! Like you, I’m so grateful there are more options available now than ever before but it also makes the decision making process a lot harder. I’m glad Gilenya seems to be working for you and long may it continue to do so. It’s really encouraging to read that you’re looking forward to my Tysabri post so much, I’ll be having my twelfth treatment next week and I can’t believe I’ve reached that milestone already! All the best x
I think that finding personal experience on the internet, from blogs and websites and forums, from those who have ‘been there, done that’, is so useful. You’re right in saying that when it comes to medical treatment (and the whole process really of diagnosis) the information available through the ‘proper’ channels is limited.
I’m sorry you didn’t get the support and information you should have had when making your decisions, but it is fantastic to see how you’re sharing your experience to help others who find themselves in the same position you were in. You should be so proud of how far you’ve come and how encouraging and supportive your blog is to others! xx
Thank you, that means such a lot to me, especially coming from someone I admire so much, who is also working hard to share their experiences and help others! As grateful as I am that the different treatment options were available to me it’s such a hard decision to make when you’re still trying to get over the initial shock of your diagnosis or having to deal with a life-changing relapse. If I can help others going through it all now, even in just a small way, then I’ll feel like I’ve achieved something worthwhile! xx
Thank you for posting this – I am interested to hear your experiences of the DMT you are currently on. I decided to go with Rebif to start with but have really been struggling recently so it’s good to read opinions on other options that are available!
Really hope you are doing ok and I look forward to reading your next blog.
I’m happy I could help! Thank you for taking the time to comment on my article and I’m really sorry that you’ve been struggling with your treatment. My next MS hurdles article, all about my experiences with Tysabri, will go up on the blog in the next few weeks and I hope you find that helps too! Take care and let me know how you get on. x