Monday, 1 August 2016
Stopping Tysabri and what happened next?! ;-)
I started on the DMD-Disease Modyfying Drug, Tysabri in 2010. It was a huge decision because having Tysabri infusions is not without its risks. But at that point in my life I wasn't actually on any of the other of the available DMD's. I had tried both Rebif and then Avonex, (both are known as part of the group of Beta Interferons) over a period of about 2 & 1/2 years but it got to the point, with both of them, that I didn't feel I was getting any benefit from being on them and having to inject myself and the side effects from that were just becoming too much of a problem. So I had a chat with my consultant and he agreed that I could stop them but then I wasn't on any type of DMD at all.
I had started to hear a bit about a new treatment called Tysabri but that it came with some pretty scary risks.......people had died while being on this treatment........this needed serious consideration. I knew people who were starting on it so I asked them how they made their decision to go on it. Of course everyone is different and everyone's reasoning is also very different. If I wanted to consider this Martin and I needed to talk to my consultant and get the real facts about it so that we could make a proper informed decision.
We took a couple of weeks to discuss it before coming to a decision......we went backwards and forwards on it but we decided that I would go on it and just keep a close eye on things! I had my first infusion on 30th June 2010. It is a four weekly infusion and I had to go to the hospital in Plymouth to have the treatment because that was the only hospital, locally, that was set up to administer it. At that point there were less than ten of us having this drug so it was in the early stages of sorting out how to and where it could be administered.
Not only was I nervous about starting the treatment but it was an infusion which meant I needed to be cannulated and because of the way my skin is and the altered sensations I get, it is incredibly painful for me to have any needle put in me! It's strange because I am not afraid of needles as such, I don't get worried about the needle itself, it is the pain that I feel when the needle goes in, it's like a red hot poker being stabbed into my skin and it hurts......a lot!
So I had the first couple of infusions and the infusion itself went ok but the poor nurses that had to put the cannula in always had an absolute nightmare. There was one nurse who was particularly good at finding veins and so whenever there was anyone who presented quite a challenge, if she was on duty then she would be asked to help. I was already friends with this nurse going way back to when I had my first investigations done in 2002 (she held my hand and helped me through my first ever Lumbar Puncture!) and so if she was on duty she would have a go but I was always a challenge and not in a good way! I wasn't happy because my veins were getting harder to deal with and I would spend the four weeks in between each treatment worrying about the next time and would I be cannulated ok? I was seriously beginning to fear that if we couldn't find another solution I would have to give up the treatment.
I went down to the hospital the next time and I was talking to a nurse I hadn't seen before. I was explaining everything to her and her first reaction was "why haven't you got a portacath in?"
"Excuse me.......a what?"
She went on to explain that it is a small port that is put in your chest and attached to a vein in your neck. When you go for an infusion, the nurse feels for the port, the needle goes straight into that port and the infusion is hooked up. We had never heard of it but it sounded ideal! I emailed my consultant and asked him about it, he told me some more information and said he could get it organised if that's what I wanted. We decided that it couldn't be any worse than what we were doing anyway so it was arranged and I had the portacath also known as a Tivad, put in my chest. It was put in just above my right breast and it was attached to the vein in my neck.......it was so clever and meant that my treatment on Tysabri could continue!
I actually stayed on Tysabri for just over four years. I had my final infusion on 28th August 2014. I tolerated it fairly well, I would have the infusion generally on a Thursday and I knew that the weekend was out, I wouldn't plan anything because I would always be incredibly tired and generally feel pretty rough but those three or four days were my only downside.
My biggest problem was that I didn't feel any benefit by being on it. I knew people who knew they were coming to the end of their four weeks because they could feel a deterioration in their MS. They also felt the pick up after they had had the infusion but I never felt either of those things and that started to really bother me.
It's true to say that I didn't have any major relapses (flare ups), I did have minor ones........they didn't feel minor at the time but there would never be anything show up on an MRI etc.......it's one area I always feel is a bit tricky. I know how I feel on a day to day basis so, in turn, I also know when things feel different. But those differences don't necessarily show up on scans which makes it difficult to say what is a relapse and what isn't? I always understood the definition of a relapse was an increase in symptoms or new symptoms that last for or longer than 24 hours. The trouble that I have is that I have several horrible symptoms on a daily basis so I then have to weigh up what is a new symptom or have the symptoms that I live with on a daily basis got any worse?
It's never straight forward with MS. I will never forget in the first few years of having MS I met a doctor who said to me that the only predictable thing about MS is it's unpredictability and I've never heard a truer word spoken!!
So I had my last Tysabri infusion on 28th August 2014. We took the decision for me to stop it because I just didn't feel like it was helping me. I had one weekend in four where I had to stay home because I felt quite rough, I wasn't feeling the benefits or downsides that I knew other people were and I know you can't compare, but you do use the information to assess where you are, so I just wasn't convinced it was the right treatment for me. We had a chat to my consultant about it and it was decided that I would stop for six months and we would reassess things then......unless anything happened before that of course!
It felt a little bit strange not being on any kind of DMD because I have been on something for so long but it was ok!
I was fine for the first seven months but in March last year (03/2015) I lost a lot of the power in my left leg, my whole left side was very weak and my left hand wasn't working properly either. It didn't happen overnight, it came on over a couple of weeks which messed with my head a little bit. When something happens dramatically you know that there's been a change but when it slowly deteriorates over days and weeks that's when I start thinking "is it all in my head?!" My altered sensations were worse too, I had horrible stabbing pains in my lower back, which I get very regularly anyway but these were somehow worse! There was definitely a big problem with my left leg, it wouldn't move on it's own at all, I had to pick it up and move it. I couldn't walk without feeling really unsafe so I had to use my wheelchair whenever we went out and our house became a very unsafe place for me to live in. Our bedroom and bathroom were both upstairs but I didn't want to just stay up there, I wanted to be downstairs, so Martin barely left my side because when he did, I'd fall over.......with monotonous regularity! 🙁
It turned out that I was having a relapse as there were new lesions that had shown up on my MRI scan.
I was given a course of steroids, oral ones, which are awful to take! They taste awful and leave a really horrid after taste........but then we are given a massive dose of steroids whether it's given by IV or orally. And, for me, historically, they have never really worked but in the lack of anything else, steroids was the only thing left for me to take and I haven't had them for years so we thought it was worth a try! I think they might have helped a bit this time but it's difficult to say because I also started a new treatment around that time too.
My consultant wasn't happy that I wasn't on any type of DMD, he thought that being on something, even if it wasn't as powerful as Tysabri, was worth trying to keep any MS deterioration at bay. So I was introduced to a new drug called Tecfidera, also known as BG-12. Not been around long and to give us some idea of how strong it is we were told that it's stronger than the original Beta Interferons like Rebif and Avonex but it's not as strong as Tysabri! We decided that it was worth a try and to my absolute delight, it was explained that it's a capsule taken twice a day and it's delivered directly to me, so I don't even have to leave the house, at all, to have my treatment.........this I could cope with! 😉
It's also worth remembering that all this was happening at the same time that we were offered the wheelchair accessible flat that we accepted and moved in to! It was amazing, I couldn't use a wheelchair in the house we lived in, there just wasn't the room........hence the reason I kept having several nasty falls. So to move in to a flat that's been build so that someone in a wheelchair can live comfortably, with everything totally accessible for them, was a dream come true........and having lived here for just over twelve months, it was the best decision we ever made.........being able to go to the bathroom, on my own, makes a huge difference to me and it's given me back a small amount of independence again.
It's the little things that makes the biggest differences, it really is!
Stay hydrated in this heat over the summer.......I'm looking forward to the cool of winter already lol!!