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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Sarah P's Tysabri Diary

    Sarah P's Tysabri Diary

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    Sarah P

    Called Sarah , but people call me Sar.
     
    Born 1970

    Live in scunthorpe

    Married 5 years,
     
    3 children age 19 yrs, 13 yrs, 5 yrs and  no more kids thank you lol, 5 ferrets,1 fat cat , 1 gold fish, and not for getting my new horse,
     
    I have had MS for 10 years or even longer but never knew.
     
    I was diagnosed in 2005
     
    I was on Avonex but the side effects were really bad, I used to hate every Friday, the same thing, headache, flu symptoms, it was a nightmare, then I was taken off that and put on Copaxone, that was even worse, fluid coming back out of my arms, etc. itching, shortness of breath, swelling and bruising, I was on it for half a year until I stopped it, it was the best thing, and now I am on Tysabri.

    Update 24th November 2011

    I am still on Tysabri.

    I have been on it over three years now and doing well.

    I don't like having it but its better then injecting myself everyday, doing really well since on it.

    Sarah

    Update 03/04/09

    Hello to all my friend's out there, who are on Tysabri or even thinking of going on Tysabri,
    it been a long time since I wrote about my infusions.
     
    I am doing fine with it.

    I had a bad relapse last month but I'm,getting back on my feet again.

    Cannot really say much really, I’ve now completed my 10th infusion with no side effects over the last year; and even this year so far so good.

    It's just me been ill, an infection and no infusion, and its a long way to go to Hull when they send you home again.
     
    My blood count has been low plenty of times but they let me go ahead with the infusion. It is my ultra fill bloods which are low, saying there is an infection but where I just don't know,but I am doing really well on this drug.

    As I have said before it's the best out there, I don't want to be in a wheel chair!!!  I will fight the MS till the end,,, I'm a fighter.
     
    Bye for now,

    Sar x

    My 1st Infusion 7th May 2008

    I took my Son to school for 9.am, then took a steady walk back home, had a cup of tea and a slice of toast, then my tummy was feeling funny maybe its a sign of been scared, mmmmmmmmmmmmmmm.

    Then after a bit I took a bus to Hull. On bus for an hour, but got there in the end.  My legs felt like jelly, looking for infusion centre as never been there before, and I also don't know Hull Royal Hospital.

    When I go to see  Dr Ming, as I live in Scunthorpe, the Hospital is 10mins walk from my house,  I can look outside my bedroom window and see the hospital, But the only thing is!!! I have to walk around to the hospital
    because there is a railway line behind my back garden. I just wish I can just get there quicker by having a bridge there so I can just walk straight across and then I'm there.  
     
    My Ms Nurse, is trying to arrange to have infusion at Scunthorpe, it would be easier for me than going to Hull every month and coming back not feeling very good,
     
    I got to the centre in plenty of time. I was taken to a bed, as it was my 1st infusion got all my blood results back they was all fine.The centre was so professional and well organized, and no paper work, as I hate paper work. Iit was questions and questions about the drug what could happen and to try look out for any side effects, that was the scary bit, but what could be worse!!!!!!

    We were ready to start,  I was chatting to the nurse saying sometimes I do pass out, and for saying that, only passed out! Say no more.
     
    Well after I recovered on with the infusion, they kept a close on eye me asking me if I felt ok, everything went well.
     
    I feel so great,,,so happy that my 1st infusion was over and done with,
     
    3 days after it was done my legs, shoulder's and arm and my limbs were aching, I also had a sore throat, then went to a cold, but beside that feeling great.
     
    Cannot wait till the next one, that will be 4th June not long till then!

    Sar

    All about my second infusion
    Just a quick note to say how i got on with my 2nd infusion,

    ......that was quick one month............. that has gone by.....

    Had my 2nd infusion 4th june 2008.

    It seemed ages to get to Hull, one hour on the bus.But got there in the end, got put on a bed as last time I passed out! The infusion  started and I never passed out, what a big girl I was lol. It took 2 an half hours and it was all over.

    Then had chance to do some clothes shopping! For getting lunch I went to  Pizza Hut with my Mum, but that was a load of rubbish and waste of money, but never mind.

    Not many side effects, sometimes I had mood changes, and really sleepy even when I have had a good night sleep, even though take tablets for my fatigue.

    My left side seemed  more heavy, but then would go away again strange, that was all really,

     Waiting for my 3rd infusion, which is on 2nd July, cannot wait till then. 

    Sar x

     p.s  a new photo of my new horse Dia and myself, was I scared oh yes, 15.hands my other pony was only 13.hands.

    Sarah P on horse

    All about my 3rd infusion, 2nd July 2008

    ...Hello all...,

    Not a lot happened, the infusion was all done in 2 and a half hours. It   was a long day, just sat there, that's the bad thing, waiting and waiting seems for ever, it's just a long day in all, I did say I would have it done at Scunny, but the best place is Hull, knowing that my doctor is at Hull, as Scunny is not that good, say no more.

    Can say that I have not had many side effects, I am really pleased with Tysabri, and, no relapses! since March.

    Just feeling weak on my left side, but that's MS for you, I can do every thing else.

    Well that's it from me, speak to you all soon.
     
    Take care everybody and be good.

     x~x sar x~x

    All about my 4th infusion - 30th July

    Hello To everybody,

    Not a lot happened, can't say a lot, but everything is going well,
    I know when I am ready for my next infusion, I get more grumpy the week before, and I am restless.

    Not had many side effects, I am even more pleased with Tysabri. I am so glad that I am on this drug its much better than AVONEX and COPAXONE.

    People ask me how I feel on this drug, well no different but the good thing is no injection every day, just an infusion once a month and not forgetting a simple blood test a week before the infusion.
     
    So if your thinking about coming on this drug (Tysabri) give it a go. What have you got to lose better than an injetion everyday.

    Trust me,
     
    Well that's it from me, Speak to you all soon.
     
    Take care everybody and be good.
     
    oh yeah it be soon Xmas everybody. lol
     
      x~x sar x~x

    My 5th infusion, 27 August 2008

    So far every infusion has gone really well.

    I got there in plenty of time and I just chilled before it all started. But the time was getting longer, not thinking anything was wrong. Then the nurse (Hayley) came across, to tell me that my blood level was low. 

    I thought "orrrrrr my good god", the nurse ( Hayley) phoned my MS nurse (Mandy) to see if I could still have my infusion,
     
    I was really scared, thinking the worst for my family.... Is it working or making me more ill?
     
    Funny thing is that after two weeks been feeling under the weather, my feet have been buzzing and be really slow walking and getting woken up in the night with cramp.

    Also not been able to do the things with my horse, I was struggling tacking him up but if you knew me I just carry on  with  a great big smile, I am so glad I have good family that can understand,
     
    Well as Hayley phoned up my stomach just ached and felt really upset, as thinking of the worse, 20 mins later Hayley said I can go ahead with my infusion.

    Wow thank God!

    They are just checking my blood more often,  but I am sure I will be all right. This is Sarah who always has a happy smile on my face and feeling like a light blub shining all the time no matter what I feel like.

    As I said before it's only MS, I am not going to die.

    So I will keep on smiling lol.
     
    Anyway take care everybody,

     x x x love sar x xx

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