I wanted to write this post because when I was first told that I was having Tysabri, a lot went through my mind and I wanted to share my experience with anyone out there going through the same 1st dose worries.
When I first got told that I would be given Tysabri instead of Rebif, I was over the moon. I remember saying to the nurse on the end of the phone that she had made my year! This was a bad thing to say in front of my work colleagues that dont know about my MS because it of course had prompted questions. When they asked, I just said that it was medical news about a test and all is good, or something like that, and of course they thought it was something like my wife was pregnant!!
The reason that it was the best thing I had heard all year was because I was told that due to the postcode lottery, I wouldn't be able to have infusions until space free'd up in the ward - this could have been 2 years I was told! Fortunately for me and many others, a new clinic was opened due to pressure from the consultants, a nurse was employed and we were in!
My First infusion:
The first dose was the worrying one. After having the risks of PML rammed down my throat for half an hour, I was about to sit with a drip in my arm for 2 hours putting something in me and I had no idea what it would do to me. The night before was the worst, I didn't get much sleep and I was up all night thinking the dreaded 'what if?'. Next morning came and off to hospital I went with my wife. The nurses were lovely, very supportive and the cannula went in as if my arm was anaesthetised, didn't feel a thing. Then the Tysabri started...5 minutes, felt fine...15 minutes, felt fine...60 minutes and I still felt fine! I was starting to question if this was some kind of placebo and just water! The hour passed quick and I was swapped onto saline to flush through for an hour - the only bad thing was the seat, it was so uncomfortable! My advise, take a pillow just in case.
Leaving the hospital, I was thinking "well that was easy" and it was. Sat in the car with my wife driving and I had the only side effect that I have had for the last 3 doses - I fell asleep - for 2 hours in total. Now given all of my worries, this is not bad!
The next day proved to be a slow one, but no major difference in fatigue overall. As my doses have gone on, 3 in total, all that has changed fatigue wise is that I am tired for longer - I can now feel it for 2 days after, but after that I am good, in fact better than before, I think that I can remember things more now and my mobility is slowly improving, result!
They tell me that it takes up to 8 infusions to feel the real difference and that can only give me optimism! If you are awaiting your first dose and you have the same worries that I had then don't panic, the worst thing is the cannulation, but the nurses are great and it will be alright.
Tysabri is the best thing out there for us and we have to embrace it, PML and all - Here's to the next dose!!
Thursday 12 September 2013
Monday 22 July 2013
So it finally happened after all...
They said when it all got confirmed that I might find it easier if I set up a blog. They said it would give me a forum to share my story but importantly to help me remember what is going on! I found the blogs that I have read very helpful in dealing with the rollercoster that is MS, so thank you all!
As I sit here now hiding from my old best friend, the sun, I can be quite grateful that I now have 6 weeks in which time I can recuperate after the hardest term I have ever taught and give my body a chance to put all the weight back on that I was trying to loose for that all important 'summer figure' or as I keep telling my friends, the 'mankinni body'!
It was as a teenager that I was first aware of the hereditary link with MS, probably not the best source, but well done Susan in 'Neighbours' for pointing that one out! I now know that it is very unlikely to be passed on, but with my Auntie having had MS and my Mother having SPMS, I had my concerns. Watching the journey that my mum took from being invincible to wheelchair bound wasn't easy, but the one thing that I have learnt is that she is the strongest person I know and probably ever meet.
It was in 2007 during a hot build up to the summer and having drunk far too much the night before (pretending that I was still at uni!) that I woke up with the mandatory splitting head and wobbly legs, but this time it was different...I couldn't see properly out of one eye! Now I know that I probably did get blind drunk that night, but not literally! In a panic, I booked an opticians appointment, but he had no idea what was wrong and I felt that he almost didn't believe that there was a massive dark spot in my vision. In seeing the doctor, he sent me to an ophthalmologist who confirmed after many odd tests (i'll come back to them another time - I loved running around the hospital waiting room with electrodes stuck to my head!) that it was retrobulbar neuritis - a classic precursor to MS :-(
So off I went and told the Mrs, which was difficult as she had seen my mum progress over the previous 5 years and then of course I told my mum and dad - that was hard. In true parent fashion, they were positive that it would never develop and it is with regret that it eventually did.
The next 5 years was a frenzy of over analysing every odd feeling that I had outside of the ordinary and then trying to convince myself that it wasn't a symptom, it was normal, my memory wasn't getting worse, it was just age! It was in October of 2012, however, that I eventually had to admit defeat and see a neurologist when I got the weirdest feeling that someone was pouring warm water on my leg when I looked down and that a colony of ants suddenly took residence all over my hand! So I guess it turns out that all those odd feelings weren't normal, they were symptoms after all, boooo! When I spoke to my parent's about it, my dad summed it up the best.."Oh sh*t", exactly what I was thinking!
So there it is, my journey to this point in brief. Don't get me wrong, this really is a rollercoster. For every down there has to be some massive ups, along with plenty of mini victories - one of which for me recently is the prescribing of Tysabri, something that I have been very lucky to be offered after some very ineffective alternatives.
As I sit here now hiding from my old best friend, the sun, I can be quite grateful that I now have 6 weeks in which time I can recuperate after the hardest term I have ever taught and give my body a chance to put all the weight back on that I was trying to loose for that all important 'summer figure' or as I keep telling my friends, the 'mankinni body'!
It was as a teenager that I was first aware of the hereditary link with MS, probably not the best source, but well done Susan in 'Neighbours' for pointing that one out! I now know that it is very unlikely to be passed on, but with my Auntie having had MS and my Mother having SPMS, I had my concerns. Watching the journey that my mum took from being invincible to wheelchair bound wasn't easy, but the one thing that I have learnt is that she is the strongest person I know and probably ever meet.
It was in 2007 during a hot build up to the summer and having drunk far too much the night before (pretending that I was still at uni!) that I woke up with the mandatory splitting head and wobbly legs, but this time it was different...I couldn't see properly out of one eye! Now I know that I probably did get blind drunk that night, but not literally! In a panic, I booked an opticians appointment, but he had no idea what was wrong and I felt that he almost didn't believe that there was a massive dark spot in my vision. In seeing the doctor, he sent me to an ophthalmologist who confirmed after many odd tests (i'll come back to them another time - I loved running around the hospital waiting room with electrodes stuck to my head!) that it was retrobulbar neuritis - a classic precursor to MS :-(
So off I went and told the Mrs, which was difficult as she had seen my mum progress over the previous 5 years and then of course I told my mum and dad - that was hard. In true parent fashion, they were positive that it would never develop and it is with regret that it eventually did.
The next 5 years was a frenzy of over analysing every odd feeling that I had outside of the ordinary and then trying to convince myself that it wasn't a symptom, it was normal, my memory wasn't getting worse, it was just age! It was in October of 2012, however, that I eventually had to admit defeat and see a neurologist when I got the weirdest feeling that someone was pouring warm water on my leg when I looked down and that a colony of ants suddenly took residence all over my hand! So I guess it turns out that all those odd feelings weren't normal, they were symptoms after all, boooo! When I spoke to my parent's about it, my dad summed it up the best.."Oh sh*t", exactly what I was thinking!
So there it is, my journey to this point in brief. Don't get me wrong, this really is a rollercoster. For every down there has to be some massive ups, along with plenty of mini victories - one of which for me recently is the prescribing of Tysabri, something that I have been very lucky to be offered after some very ineffective alternatives.
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