You have been battling unknown symptoms and strange feelings for what feels like forever. You’ve seen various health professionals for their opinions and for testing. At last, you have a diagnosis and you start to feel like there is light at the end of the tunnel. We live in a world where with every problem, we want to find that one simple solution to fix it. With MS, this can be easier said than done. As of yet, there is no cure for Multiple Sclerosis; although scientific studies are being carried out to try and come closer to doing just this. However depending on the stage of your MS, there will be various treatment options available to you.I was desperate to start treatment as soon as possible after my diagnosis. Anything to try and alleviate the feelings and pain that I was experiencing. It can be a lengthy wait before being put forward for any sort of treatment, so when you are having to wait; make sure you research the different options available to you.
What is a DMD?
Disease Modifying Drugs (or DMD’s as they are more commonly known), are used to try to reduce the number of relapses experienced and can slow down the rate of disability. They can be taken in various ways from injections at home, intravenous treatment at the hospital or tablets on a regular basis. For some people they can get started on one of the DMD’s and find that their symptoms massively improve and they experience more remissions than relapses. For others it can be a teething process, to find the right treatment that suits the individual the best. Deciding on what treatment to start when you are first diagnosed with MS can be a daunting prospect, no matter on how desperate you are to start! It is so important to choose the best medication for your own personal circumstances.
How did I decide?
One of the first sites I came across was weighing it all up. This gave me a vast amount of information and advice on what to consider when deciding what medication to begin with. I would strongly recommend having a read if you are torn between which DMD to take.
In Southampton, I was referred to a DMD day session at the general hospital. This was an opportunity to meet other people with MS who were also being put forward for treatment. On the day there was industry nurses and MS specialists giving talks on each DMD to give an understanding as to what to expect with each one.
I was counting down the days until I could start on any treatment possible. In my head I convinced myself that once I started on a treatment, that would be my wobbly days over. I guess I put to the back of my mind, the fact that MS doesn’t have a cure.
I went with my mum and once we arrived at the session, I found myself becoming upset as I saw people much older than me with MS and people experiencing relapses at the time. I will admit that I definitely freaked out and became very emotional when they were asking around the room how long everyone had been diagnosed with MS for. Surely I was too young to be there? Surely I looked ‘too well’ to have MS? Now I know that these two factors do not have any bearing on who can have MS, as lots of people with MS are also young and also look ‘well’.
There was a table spread with various different treatment options; as well as sponges to act as fake skin for us to practise using without having to inject ourselves. There were many names of drugs that I recognised such as avonex, betaferon, rebif, copaxone and many more. Each one carries different side effects when taken. They also vary in terms of how frequently you need to take the medication. My mum and I, had lengthy discussions about what DMD would be the best one to start on, before we arrived at the session. For me, I felt that having a treatment with less side effects was going to be the best option. Having to administer injections didn’t faze me, as I’m not frightened of needles. For others, it may be the case of choosing an injection that you have to take less often, if they are unhappy about needles. Copaxone is an injection that you take once a day in areas such as your thighs, stomach, hips and arms. It is one of the medications for MS that doesn’t come with an array of side effects. Things such as flu like symptoms are very common on the other options available. With this in mind, we whittled it down to Copaxone as being the DMD I would opt for.
There was a young lady sat on my left with her Dad and friend who was also considering taking Copaxone. Her reason was that it would not interact with the medication she was currently taking to help other symptoms that MS was throwing at her. She also seemed just as freaked out as I was originally with being at this session, which made me feel more relaxed that I wasn’t in this alone.
After the session, I contacted the industry nurse that was at the session and asked to give the lady my contact details. Her name is Lisa and we ended up starting Copaxone on the same day. On the lead up to our first session with the injection nurses, we had various phone calls to discuss our fears and thoughts on everything. She is ambitious, courageous and lives life to the full. Just the person I needed to have around at this time! She had her appointment first and once she was finished up, I received a phone call with a full run down on what to expect when the nurses turned up to my house. To my surprise, the nurses showed up with a bunch of sunflowers that Lisa had sent to wish me luck for my first dose. She is truly remarkable and I feel so happy that I reached out to her.
The first session with the nurses was so nerve racking. The idea of injecting myself previously didn’t worry me, but when sat with two nurses and an auto inject for the medication; it dawned on me that there was no longer sponges to practise on. I was the human pin cushion and I would not have nurses with me the next day to help me. I was armed with leaflets, injection journals and equipment to carry out the rest of the injections by myself.
It’s strange now looking back on when I first started to inject. It’s become such a normality to my daily routine that I barely flinch when I do it now. Mum even laughs at me and says that I could probably do it with my eyes shut because I’m such an expert! I must admit, I’m still not brave enough to inject myself without my auto inject. I’ve only had to do it once without the auto inject when I forgot it on a night out in Brighton. Luckily, one of my best friend’s Bobby stepped up to help jab me! I guess it’s not even all that bad, I probably just need to toughen up and give it a go for myself!
The only real issue I have experienced with Copaxone is the tight chest feeling after some injections which only lasts around 20 minutes and injection site reactions which can be itchy and sometimes leave lumps. In the grand scheme of things, neither of these are too hard to deal with. However when you have been told that your medication is no longer working and you potentially have active MS, you begin to wonder why you are still giving yourself lumps and bumps daily.
After my most recent relapse my MS nurse Hazel, wrote to my consultant to update him on my most recent symptoms. She mentioned that my treatment potentially needed to be escalated to a different DMD to prevent the amount of relapses I was experiencing. I went to my consultants clinic with my best friend Mel as a support for me. I have kept a very close track of symptoms over the last 6 months and for the most part; I felt that half of the times that I was really fatigued or suffered from numbness and sickness, that it wasn’t MS related. With my consultant looking in greater detail at all the evidence I had brought to the table, he advised that it was clear that I have had more inflammatory episodes than the most recent relapse. With this, it meant another MRI to see what disease activity is affecting my brain and spinal chord. Once he has the results back, this will determine what medication I will be escalated to. The two so far we have been advised of is Tysabri and Fingolimod. Both of these come with high risk side affects in some cases and with either, I will be closely monitored by health professionals to make sure that I am still healthy.
I had my MRI a couple of days ago at the hospital on my brain and spinal chord in a very fetching outfit! I had half of the scans done with contrast dye injected by a cannula and the other half without. This was to see in clearer detail the lumps and bumps in my brain and to see exactly what was going on. This is the 3rd MRI i’ve had now and I have to say I do struggle to keep still and not fidget. I also don’t like being in tight confined spaces for too long. The whole experience was made a lot more bearable when the radiologist said that they could play Beyonce through the ear defenders for the whole scan so that I had something else to listen to besides the loud clanking and whizzing sounds of the machine. “Amazing, that will make me feel much calmer, thank you!” I said. More like ‘I will struggle to keep my feet still and I can’t promise that I won’t sing along’ I thought to myself!
Now the waiting game is back, ever so slightly in MS limbo land yet again. Back to the waiting room of the unknown. Awaiting the next step in my MaSsive Journey. Whilst awaiting the switch from my current MS DMD to a more effective treatment, I am still having to use Copaxone daily. I am finding myself getting increasingly impatient, as I know full well that Copaxone isn’t working for me. I guess I am impatient but also getting frustrated of feeling that my life is one huge relapse. To be in full remission would be a dream at the moment!
Which one will be my new treatment and what will my scans show? Now we have to watch this space..