Highlander's Tysabri Diary
TYSABRI INFUSION NUMBER 1 24.3.2009
For the first infusion I was in hospital
at the time due to a relapse. My MS had become very
aggressive over a short period, it was my 3rd relapse
in 6 months. I remember asking the Nero about this new
drug I had heard of, Tysabri, some months earlier and
after 2 MRI scans I was told that I did meet the criteria
to receive the drug.
I was the first person in Highland Region to get the
drug which was an exciting time to be the first as I
was so low at the time. I was of the thinking that I
was moving on to secondary progressive so getting a
chance with this new drug was exciting and gave me a
sense of hope.
For the first infusion I felt like a bit of a celebrity
as I had 2 neurologists by the bed, the 2 MS Nurses
and the Ward Sister and some nurses and a consultant.
I remember cracking a joke to them saying if anything
went wrong I was in safe hands.
The Infusion itself went fine, there was no problems
at all, the infusion lasted the 1 hour and the nominal
1 hour sitting about after the infusion. I can remember
being quite down at the time after being taken into
hospital by the ambulance and was in a wheelchair at
the time, if I had hope it was this drug.
I remember about 3 days after the infusion restarting
physiotherapy; it was very slow to start with stretches
of the legs and upper body. I can remember going through
to physo on the ward in my wheelchair and the physo’s
told me I was going to try and walk to today using the
hand bars and their help. I was worried that I had to
do it but they involved me, told me I would be safe
and encouraged me to try. I remember positioning myself
at the end of bars in my wheelchair with a physiotherapist
in front and one behind me.
I took my first steps, I managed to walk the length
of the bars, I was crying I could not believe it, I
was taking my first steps. I can remember the physo’s
clapping and telling me I was doing so well!
I was so emotional when I got back to my bed on the
ward I had hope for the first time in months.
Over the next 2 weeks they gave me intensive physo every
day and when they where not there at the weekend I went
through to the gym and done exercises myself as they
directed.
After 2 weeks I was allowed home at the weekends with
my sticks, I was improving. The wheelchair and able
to walk with 2 sticks further than before.
TYSABRI INFUSION NUMBER 2 22.4.2009
I was out of hospital by this time and back home. I
had to go to hospital again for infusion number 2.
I remember having to go to the day care unit, one of
the neurologists was there to check me over when I arrived
on the ward. I was still in the wheelchair but I could
walk a much longer distance with the sticks 2 of them.
I was improving beyond my belief I could not believe
it. One thought I had at the time was the beta-interferon
which I was on before hand you where told it was working
but you never seen any changes in your ability.
This Tysabri you could see and feel working what a magical
drug what a difference it had made. One thing I noticed
with the tysabri was after about 2 and half weeks after
getting the infusion was your ability would slip pain
would come more pronounced and so would the sensation
in your body. And the ability in the length I could
walk,
I can remember being in hospital when I was in before
for 6 weeks when I started the TYSABRI treatment in
the ward I was in, there was an older gentlemen with
ms he had Primary Progressive MS but he was so happy
that the new drug was making such a difference in my
ability, and I felt almost ashamed for getting this
drug but knowing there was nothing for him, but he told
me not to worry, to talk heart in the fact that this
new treatment is making such a difference.
TYSABRI INFUSION 3 21.05.09
By the 3rd infusion I was out the wheelchair and able
to walk with 2 sticksfurther than before.
My 3rd infusion was back on the ward where I was for
so long the rehabilitation unit within the hospital
felt like home knowing all the nurses and Doctor’s.
This is where I meet Mark for the first time; He was
someone else that had been given Tysabri a month after
me. So it was good to chat to someone else that was
sharing the experience. The third infusions went fine,
and have so many improvements in my health; I feel stronger
in myself and also have good power back within my body.
TYSABRI INFUSION 4 18.06.2009
Back to hospital again for the infusion. Mark was in the treatment
room when i arrived.
And again you felt the drug wearing off but it was lasting longer
i felt the slip after 3 weeks now which is longer than before, long
may in continue. Again i have more power in my legs and the shaking
has lessened markly. My upperbody strenght has also improved as well.
The strange thing almost as soon as you have had the infusion what a
boost you seem to get, by that i mean you legs feel normal and stronger
which in turn makes you happy as you feel you are responding well to the
treatment.
The joke of it is i could of danced out the hospital i felt so good!
TYSABRI INFUSION 5 16.07.2009
Nothing but good things to say about this past month,
my legs have improved no end.
Down to walking with one stick, which is good can’t
believe the improvements made. On this infusion met
Neil for the first time, he was someone else that had
started the treatment, he was very worried and nervous
getting the infusion, but he said to me it helped him
as I explained the procedure and what the infusion entailed.
And told him the improvements I had made since starting.
TYSABRI INFUSION 6 11.08.2009
What an amazing time this month just been getting better
and better can’t get to grips with the progress I am
making.
Even started driving again, that is progress which gives
me massive amounts of freedom which is so good, drove
to hospital to get my infusion. In myself I have seen
a massive difference now for where I was only months
ago.
TYSABRI INFUSION 7 08.09.2009
Again making good improvements with the Tysabri, so much so i drove
to hospital again. As per usual us 3 amego's where in the treatment room
to get our infusion.
I am now at the point in my treatment of lasting the whole month without
any dip which is such good news for myself.
It was good to discuss how we where getting on with each other, Neil at this point
did not feel any improvement this month, but in saying that not a slip ethier which
was good news. Mark was ok and had an improving month the same as myself.
Our Ms Nurse popped in to have a chat with us to catch up while having the infusion
while making notes in her diary. Again after the infusion felt a boost from the
Tysabri which was good for the drive home.
TYSABRI INFUSION 8 06.10.2009
TYSABRI INFUSION 9 03.11.2009
TYSABRI INFUSION 10 01.12.2009
TYSABRI INFUSION NUMBER 11 30.12.2009
Infusion Number 11 was a bit of an adventure for me
I was supposed to have the infusion yesterday but could
not make it to the hospital because of the snow!
So was a day late in getting the infusion, got a lift
to the hospital via community transport for this infusion.
The Infusion went well once I got to hospital no problems
with getting the needle in but was on my own for this
one as I was a day late.
As always got my dinner in hospital while there, I sat
with the nurses in the ward on there day room as one
of the Doctors was needing the room that I get the infusion
in for another person. It was good to catch up with
the nurses that looked after me when I was in for so
long and catch up with a chat. On looking back this
month no improvements to report MS is static at the
moment, just need to work at getting strength back in
my legs.
TYSABRI INFUSION 12 26.01.2010
Still trouble in getting the infusion at local hospital!
So again will get infusion at Raigmore in Inverness
they organised a lift to hospital for me so all fine
there.
Since the last infusion things have stated static no
improvements no backwards steps which is good. At the
infusion today
TYSABRI INFUSION 13 23.02.2010
First infusion today at local hospital, bit of a first
yet again getting this drug at local hospital. Dan the
nurse took charge to give me infusion, he put the canular
in easy felt no pain. Infusion went well with all the
checks done, seemed to be a walk in the park for them
considering it has taken a year for it to get done.
Same as last time no improvements but no getting worse
feel so good about that. Dan stayed with me for the
whole infusion process from start to finish.
TYSABRI INFUSION 14 23.03.2010
Second Infusion today at local hospital, Dan again was
the nurse who took charge of the infusion. Everything
was fine with my bloods, Felt at ease as Dan the Nurse
can put the big needle in without any problems. No real
improvements since last time, but in saying that no
dips wthier. My legs at time still feel a bit weak,
but upper body strenght has improved.
TYSABRI INFUSION 15 18.04.2010
Dan was on holiday for this infusion so another nurse
took charge of this one. The Doctor came along and put
the canular in for me, and you can really notice the
difference in some Doctor's getting it right first time,
it took the Doctor 3 attemps to get the needle in i
was battered at least my arm was and being needle phobic
does not help.
The actual infusion when it stated was all fine everything
went fine. As usual the infusion took 1 hour and 1 hour
sitting about after the infusion just to check everything
was ok. After this infusion seemed to get a good boost
from the tysabri,the next day i seemed to have a spring
in my step that was good
I seem to notice the last few infusions there has not
been any slip but no massive improvements ethier. But
i am fine with that as i am not slipping which is good.
TYSABRI INFUSION 16 18.05.2010
Dan the nurse was back from holidays, so no problem
getting the canual needle in for the infusion. Lydsey
the MS Nurse also made the trip down from the city to
see how i was getting on. We had a chat while getting
infusion, I was telling her since the last infusion
i was having altered sensations in my legs, when i seem
to lie down it's gets worse. But hey ho what can you
do. The infusion it's self went ok no problem's at all
which is good to see.
Allthough have noticed since last infusion i keep getting
burning pins and needles in my legs, more of an annoyance
than anything else. But just minor symptoms but in saying
that it is annoying, but 20 minutes after the infusion
i had a bounce in my step i was walking about the day
room in the hospital without my stick that has to be
a plus. so was quite happy with the boost the tysabri
gave me.
TYSABRI INFUSION 17 15.06.2010
Been quite a difficult 4 weeks since last infusion. I took a big
dip midway through second week. No movement or power in my legs,
finding walking hard even just short distances is like a marathon.
Called Doctor to house i was that bad, He was looking to put me in hospital
and asked me to see how i was over the next few days.
The funny thing is i woke up in the morning with a bounce in my step
and i got better over the next few days. In thinking it has been a difficult month
for me
The infusion at the hospital went fine, Dan the head nurse was in as usual to do the
infusion. Needle went in fine no pain! The infusion went fine during the infusion
Dan showed me the new kit they had so they can now make the infusion up at the
local hospital, that will save it being motored from the city thats a 70 mile round
trip.
The infusion went fine no problems at all and as per usual, and at the end caught up
with Physo to book an appiontment on a plan to get my legs working better, we will have
to wait and see.
TYSABRI INFUSION 18 13.07.2010
Since the last infusion this months been pretty flat. I am having problems again with
walking no power in my legs at all, walking has been a strugle. I also seen the Nuroloagist
to catch up. I also asked to see my MRI pictures the first time I have ever seen them.
The Nuro was explaining why i had so much trouble walking as all the lesions are in my
spinal cord half way up my back. There is only a few lesions on my brain.
The infusion went fine no problems at all with delay in the Tysabri getting to the hospital
as they can now make it up themselves due to a new adapter they have.
I seem to have hit a flat spot not getting any better but in saying that not getting any
worse. I suppose i am still fustated as walking even a short distance is still a struggle.
Thats the fustrating thing with MS everytime you make anything in ways of an improvement
the MS rears it's ugly head and knocks you back again.
The 18th Infusion went fine, The needle went in with no problems which is handy i do hate
that big needle going in but the benifits of Tysabri far outway the little pain you get when
putting the big needle in.
THIS IS THE END
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