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    You are here : Home » Get Involved » MSRC Interactive » Tysabriģ User Diaries » Jill's Tysabri Diary

    Jill's Tysabri Diary

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    Name Ė Jill

    Age Ė 38

    Bio Ė I live in Co. Durham in the North East of England.† I worked for the Department for Work and Pensions for 20 years, from leaving school, but was offered medical retirement in 2005 following long term sick leave.† I eventually retired with a pension in September 2005.† I have fantastically supportive parents and friends, which makes me very lucky.† I live with my two cats (my girls), who keep an eye on me at all times.† I fill time with cardmaking and scrapbooking which I love and it focuses my mind and helps me get through the dark days.

    Diagnosed Ė June 2001

    My MS history -

    I had no inkling that anything was seriously wrong.† Alright I felt tired, but I thought this was just down to it being the end of the winter and just being promoted at work.† I woke up one morning with a numb face down the left hand side.† I went to my GP who thought I may have Bells Palsy and gave me some Prednisilone.† It started to get better while I was taking the steroids, but when I stopped it came back just as bad.† So off to the GP again.† In my surgery you rarely get to see the same GP twice if you need a late (after 4pm!) appointment, so I saw another GP who suggested I see a consultant at the local hospital and he would refer me.† I got home to a ringing phone with the surgery telling that an appointment had been arranged for me at 9am the following morning.† Now I was starting to get worried.† I rang work and told them I would be in late, after I had been to the hospital.

    The following morning I could hardly stand up and my vision wasnít too good.† My Mam took me to the Hospital and we saw the consultant.† After looking in my eyes and doing what I know now is a neurological examination, he asked me to wait outside.† He then came out with my notes in an envelope and told me to go to the Royal Victoria Infirmary (RVI) in Newcastle they were expecting me.†

    After the usual examination I was admitted and my poor Mam had to leave that night not knowing if Iíd still be here in the morning.† That night I had an MRI and a lumbar puncture.† I was given one bag of methyl-prednisilone and then the doctors thought I might have Herpes Simplex in my spinal fluid, so I was given strong antibiotics.† When this made no difference at all they continued the steroids, which seemed to calm my symptoms down.† I was finally discharged after 2 weeks, only to go back in a week later.† My legs had given up.† I was diagnosed after another MRI Ė 6 weeks after the first symptoms appeared!

    I was on Betaferon for about a year, then Copaxone for 5 years.† The Copaxone has kept me relatively relapse free, but I relapsed early this year.† In the past my relapses have been very acute,† but his one has been very gentle in comparison.† My Neurologist decided to offer me Tysabri when he confirmed the relapse.† I have an MRI on 9th October and my first date should be after that as along as MRI is OK.

    Saturday 10th April 2010
    I had my infusion on Thursday and it went fine apart from the usual hunt for the vein!!† Once we had the cannula in, the doc couldnít get any blood from it although the flush went through fine after a little bit of forcing LOL!!† She ended up having to get the blood from a vein in my crook of my elbow even though the cannula was in my hand.† Even then I was loathed to part with any blood - she barely got enough for the two vials.

    I had a bad month last month which is why there was no update.† I was exhausted, but couldnít rest and so irritated!† Luckily Iím seeing a counsellor to help me through the depression and she talked me through the irritation and I did some art to get the aggression out and calm myself down.† It worked a treat!† On top of that I had a new bathroom installed which meant I had to leave the house in the capable hands of my parents and decamp to my friendís house to be near a toilet (oh you dastardly MS).† The bathroom is perfect and was designed around my needs, so was worth all the disruption.† Then last Saturday my Mam and I were cleaning upstairs (as there was dust everywhere) and I managed to trip over the vacuum cleaner and inflame my medial ligament.† Great.† As if I havenít got enough to deal with Iíve now got a puffy very sore knee.† It was quite funny to see everyoneís faces when I turned up at the hospital on crutches with a strapping on my knee (my evil self coming out again!!).

    I felt terrible after treatment on Thursday and fell asleep as soon as I came back.† Then yesterday I fell asleep even though I had friends round to paint my staircase and theyíre both very loud and raucous, and there was me, asleep!!

    Today I feel much better.† Iím aiming to rest this week as Iím going to the birthday party for a craft shop my friend and I go to regularly on Friday and (hopefully) Saturday.† Weíve decided to get a taxi so I wonít be too tired driving there and back.† Also the craft shop staff know about my MS and have a stool ready for me (and only me) so I can sit and watch the demonstrations and have a good old chat!!

    More next month


    Jill xx

    Sunday 7th March 2010
    Err Canít remember which number I am at.† I have been very remiss; not filling in my diary.† Can you ever forgive me?!?!† I think I have had 2 infusions since my last update.† Thereís not much to tell really.† Both infusions went fine and I had no problems.

    I have seen my neurologist (Phil).† The great news is that I NO ACTIVE LESIONS!!!!† He thinks that this is down to the Tysabri.† You couldíve knocked my Mam down with a feather when he told us.† I had little or no reaction.† Iím still depressed and am now seeing a counsellor, so I told her about my reaction,† I can make myself feel happy about it, but Iím nowhere near as genuinely happy as the people around me.† Its weird.† Just feel a little flat.† Wonder if itís the anti-dís that are making me feel like that.† Think Iíll ask my GP next time I see him.† Weird!

    Apparently it only takes 3 weeks for the Tysabri to come out of our systems, so my 2 month break means I have effectively started again.† Phil thinks that I should see some sort of improvement after my next treatment which is number 5 and is on Thursday. (I promise I will write my diary soon after my infusionÖ.honest!!!)

    I have got a lot of pain in my legs but Phil thinks this is down to nerve damage.† My Physio thinks that I muscle fatigue as well as the nerve damage so she wants me to try my crutches to see if itíll alleviate any of the pain.† So Iíll give them a try next time Iím out.† She did say that using the crutches my give me muscle fatigue in my arms.† Blinkiní typical.† Get rid of one pain, only to get another!!!!

    But I do have a little more dexterity in my hands which is brilliant.† It makes the crafting I do SO much easier!!

    Just realised how depressive this entry sounds.† Iím feeling good and feel like the depression is lifting.† I am using my crafting / artwork as a therapy and am really enjoying it.† I have started to do art journaling and this is really helping.

    Til the next one

    Jill x

    Thursday 17th December 2009
    Well I had my last Tysabri for 2009 today.† It went fine and time passed really quickly due to two lovely ladies Iíve met.† Weíre on the same calendar and have been meeting at the hospital for the past few months.† Theyíre called Justine and June.† We get on like the proverbial Ďhouse on fireí.† We spent the whole time laughing and joking and had the ward raised with our laughter!!† It was just the antidote I needed.

    Ever since I was poorly in the summer Iíve not been feeling myself, but I really started feeling down at the beginning of December.† I went to the docs and was diagnosed with depression.† He has referred me for counselling and has given me anti-depressants (anti-ds!).† Iím starting to feel a little more like myself, but am currently snowed in and am going a bit stir-crazy!!!

    Iím sure Iíll be OK.

    Til next time.



    22nd November 2009
    Well Iíve MIA for quite a while.† Ooops, Sorry!!!!!

    I had my MRI a while ago, canít remember when.† Doncha just lurve MS!?!† A couple of weeks after the MRI my MS nurse rang asking me to go in for my infusion on my regular scheduled date which I was really pleased about.† Donít know about you but my life is arranged around that Thursday every month!

    Off I went to the hospital on 22nd October 2009 and was greeted with Ďoh you finally decided to come back then!í.† I know all of the nurses on the ward really well as they have nursed me since before I was diagnosed and saw me through that fateful day.† The infusion went really smoothly and although I had a bit of headache while having the infusion, I was fine afterwards.† After all it was only 2 months since my last one.† I was scared in case I suffered anaphylactic shock, but the MS nurses assured me Iíd be fine, but they stayed close by just in case.

    I had a little more energy for the first few days then it started to wane.† I was a little concerned as I had booked to go away for the weekend on a crafting retreat the week before my next infusion.† I neednít have worried.† I managed to stay awake and active for 3 days straight.† I did have to go to bed early to make sure Iíd be fit for the next day, but I managed and loved it!

    I had my next infusion on 19th November 2009 and I feel great.† Iíve been busy everyday since I had it.† My legs are starting to ache a little now, but this is the best Iíve been for months.† Gotta rest up cos Iím off shopping on Wednesday.† Gonna try and finish my Christmas shopping (sorry to mention the dreaded ĎCí word).† Iíve made quite a few of the gifts this year and they just need to be finished off, but Iíve got loads of time for that.

    Til next time

    Jill x

    Tuesday 15th September
    Iíve not had any Tysabri since my last diary entry.† Iíd been feeling really rough for a couple of months and had pain in my legs, spasms at night and neuropathic pain too, so my MS Nurse decided that I should see my consultant (Phil) before I had any more infusions.

    I had an appointment with Phil on 25th August anyway which was before my next infusion.† He said he didnít think it was a relapse, but wanted me to have a course of steroids and an MRI before any more infusions.† Once heíd seen my MRI he would decided whether I should go back on the Tysabri or not, but he thought I would be going back on it.†

    I was really lucky as I had my steroids on 26, 27 and 28th of August as I was supposed to be in one of those days anyway for my Tysabri.† I had the largest dose of steroids Iíve ever had Ė 1g on each of the 3 days.† I usually just have 500mg, so it was double the dose.† My body didnít like it one little bit.† Iíve had reactions in the past but nothing as bad as this.† I had hallucinations, no sleep for 4 or 5 days, a headache for the 3 days I had the steroids and munchies which started 5 days after Iíd finished the steroids!!!!†

    Anyway I'm walking better now (just a stick, no crutches) and Iím not having spasms at night so my legs arenít painful.† The neuropathic pain is still there but I can cope with it now as itís the only thing apart from the MS of course LOL!!!!!!!†

    Iím still waiting for a date for my MRI.† I rang the department today and they have the request, but theyíve not done the appointment yet.† Just hope the MRI is not with contrast after the escapades of the last one!!!!† Just have to wait and see.† Let you know what happens next.†


    Jill x

    July 2009 Tysabri Infusion
    I had my next (canít remember what number it is LOL!!) infusion on 2nd July 2009.† It turned out to be one of the hottest days of the year and the ward had moved into the new building at the hospital so I had to walk a lot further to get there.† Then I got lost inside the hospital.† At least I was on the right floor, but there were no signs for the Neurological Day Unit.† It turned out to be ward 17 (or something like that!).† At least I know where it is now.†

    So I was absolutely shattered when I got to the ward (after having to ring them to see where they were!), but at least it was lovely and cool with the air conditioning.† Unfortunately because it was cool my veins went from standing to attention to burying themselves far, far inside, so the poor doc had a job getting the cannula in.† Once it was in, the treatment was fine.†

    I left the hospital at lunchtime and found a quicker way to get back to the bus station, but it might be blocked off this month as the work is still ongoing to build the new hospital.† We got the bus home and my Mam had to ring my Dad to pick us up along the route home as I thought I was going to pass out from the heat.† I spent the rest of the day in bed with a fan blowing cold air over me.†

    Iíve had a pretty rough month as my legs have decided to start having spasms, so Iíve started on Baclofen at a very low dose which has been doubled today as the spasms have been worse over the last couple of days, but that may be down to me having laryngitis.† I have rest my voice which is no mean feat for me.† My friends and family all think its hilarious.† Its great to know youíre loved and cared for LOL!!!!!!†

    Til next time


    Jill x

    7th and 8th infusion diaries together
    Ooops!!!!† I was doing so well writing my diary every month thenÖÖ I completely forget about it.† DOH!!!!†

    Anyhoo had my 7th infusion on 7th May 2009.† It went absolutely fine.† Think that had a lot to do with the fact I had a morning appointment.† I came home and had a couple of hours rest.† I went to bed with a headache and got up the following morning with flu like feelings, but Iíd already arranged to go out, so I dosed myself up with paracetomols and off I went and had a great day.†

    I went from strength to strength and even had a couple of days walking without my stick.† Iíve never done that for about 7 years!!!!† I still took it with me, but left it in the car so it was there if I needed it.† I had very little pain in my legs too, so it was a very good month all round.†

    I had my 8th infusion on 4th June 2009.† It was another afternoon appointment.† I had problems walking up to the hospital as my legs were hurting so much (Iíd gone downhill in the 3rd week after the infusion in May), but after the infusion I practically skipped out of the hospital.† Very, very weird!!†

    Iím not feeling so wonderful now.† Iíve begun to notice a bit of a pattern in my MS with Tysabri Ė I seem to have one good month, then one not so good.† However on the good month, the good feeling only last for about 3 weeks then I go downhill and start feeling rough and MSíy.† The Tysabri is certainly helping with my walking, stability and even sometimes the pins and needles in my hands, but I still get the neuropathic pain as bad as ever.† I know that the pain I feel is nowhere near as bad as someone people, but its just downright annoying and irritating and made worse by the fact the only thing that takes it away are pills which make me sleepy Ė like I need to be more sleepy than I am already LOL!!!!†

    Well if my prediction of this pattern is right, next month should be a good one so watch this space!!!!!†


    Jill x

    6th infusion 9th April 2009

    I had a brilliant month last month.† My energy levels were sky high and my walking was brilliant.† My balance was fab too.† I even managed to walk a little way outside without my stick.† First time for 6 years!!† I noticed that I started to feel tired and a bit MSíy 4 days before treatment, so consequently felt quite yuk by the time I got to the hospital.

    The doc had problems finding a vein for the cannula and managed to go straight through a vein on my left hand so I ended up with a pressure bandage on it to take the swelling down and stop the bleeding.† She eventually managed to find a suitable vein on my right hand and the treatment started.† The cannula started to leak a little so as I was close to the end of the infusion I decided to sit very still rather than go through another cannula being put in.† I was so bored!!!

    Once the infusion was finished I went to the loo with the cannula still in.† After washing my hands I dried them with a paper towel and went to put it in the bin.† My foot slipped off the pedal on the bin and the metal lid came down on my hand.† Iím right handed so it was the one with the cannula in.† It absolutely killed and pulled the cannula out of my hand a little.† It knocked me sick and with both hands now bandages I had what felt like the longest journey home ever.

    I felt terrible on the Friday, but stupidly still went out and managed to scratch my car.† Iíve taken things easy ever since.† Iím having days where I have so much energy Iím bouncing off the walls and then others where I am shattered.† Suppose its all about getting used to the new drug and how it effects me and how to cope with it.† Overall Iím happy with how its affecting me.†

    Just hope the next infusion goes more smoothly!†


    Jill x

    5th Tysabri Infusion 12th March 2009

    Had my fifth infusion on 12th March and I was ready for it.† When I had my first infusion my MS Nurse told me that some people on Tysabri could tell when they were due for an infusion by the way they felt.† She wasnít certain if it was just psychological or it was actually happening.† For a week before I was due to have the Tysabri I felt really ĎMSyí, off balance, sore legs and very wobbly walk.† Very weird.†

    I felt awful on the morning of the infusion and dragged myself to the hospital via Marks and Spencers (needed some retail therapy!).† The doc got the cannula in on the first attempt and the infusion was started. It seemed to take no time to go through and in what seemed like a flash I was ready to go home.†

    On the night of the infusion I was exhausted and slept fitfully but this was probably due to the heart to heart Iíd had with my MS Nurse (Thanks Carmel).† I got up on Friday and even though I had a headache I could walk properly again; in a straight line with no lead in my boots.† Iíve not been as tired and not needing to sleep as much.† I even went shopping on the Saturday and drove there and back and walked quite a long way.† I was tired when I got home, but very happy.†

    Since the fourth infusion Iíve started to notice changes in my MS.† Iíve got no expectations and Iím taking each day at a time, but long may this new me continue!!†

    Love Jill x

    Saturday 11th October 2009

    I had my MRI on Thursday.† It was fine.† It seemed to be over in no time, but I later found Iíd been lying down for over an hour, so my body is complaining a little.†

    The MRI would've been shorter if they could've found a vein to inject the contrast into, but as usual my veins decided not to play.† At one point all I could do was laugh.† I'd already had 20 minutes of scans and had my head taped down onto the bed with the cage over my head and headphones on.††

    They brought me back out of the machine and went to do the injection.† They told me to lie as still as possible as they needed the rest of the scans to be as close as possible to the originals they'd just taken.† Well of course they couldn't find a vein that would take the injection.† They tried both arms before calling a doctor in, who tried both arms and I mentioned I had good veins in my foot.† So off came my sock, but because I was lying down and cold, the veins had disappeared.† So then the doc said that if they warmed my hand up a vein may appear.† So the nurses went and got a jug of warm water and started to ladle the water over my hand.† All the while the doc is trying to find a vein in my left hand.† She found one (yaay!!) and put in a canula just in case they needed to do another injection.† I was told to put my hand up in the air til she got the injection.††

    At this point I burst out laughing.† There I was taped to the bed, with a cage over my head and headphones on, my right arm in a jug of warm water, my left arm up in the air with a canula in the wrist and no sock on my right foot and the trouser leg rolled up!!!!† If it was in a film no-one would believe it could happen!!!!†

    Just got to wait for Phil to have a look at the scan and then hopefully Iíll get a date to start the Tysabri.† Iíve been of Copaxone for 6 weeks now and Iím feeling the difference.† Its just sort of crept up on me.† Iím absolutely exhausted and just canít really be bothered with anything.† Life just feels like hard work at the moment.†



    1st Tysabri Infusion 20/11/08

    I had my first infusion of Tysabri yesterday and it was absolutely fine apart from being mind-numbingly boring!!

    I had to complete a consent form which I wasnít expecting, but really when I think about it now it is a hospital procedure.† Just so used to self injecting I suppose.† It was a bit scary when Jeanette (one of my MS Nurses) went through all of the possible side-effects.† Although Iíd watched the DVD, read the booklet and spoken to Phil, it was sort of Ďrealí at that point when Iím sitting there signing a form to accept the risks.† It really hit home when she started talking about the possibility of anaphylactic shock.†† Secretly I had a little wobble, but I think I hid it well!

    The doctor actually managed to find a vein first time and got the cannula straight in.† That never happens to me.† Mind I had gone to the hospital with so many clothes on to make sure I was warm enough for my veins to be near the surface that my boyfriend thought heíd have to roll me to the car like a Michellin Man!

    Jeanette brought in two trays with her.† One had the Tysabri in and I didnít take much notice of the other until my boyfriend pointed out that it looked like all the drugs they might need for resuscitation.† I wanted to know, but I had another little wobble.† He probably noticed but thankfully didnít say anything.

    The Tysabri was hooked up through a pump after the cannula had been flushed and it was set away for an hour dripping into my vein.† I felt fine all the way through.† I hadnít taken anything to occupy myself (stupidly), as I wasnít sure how I was going to be and wanted to see everything that happened.† Iím nosey like that!† Next time my Nintendo DS is going with me.

    An hour, two cups of coffee and a packet of biscuits later, the Tysabri had finished and a bag of saline was hooked up through the pump to make sure I got every last drop of Tysabri that was still left in the tube connected to the cannula.† This only took 12 minutes to go through then I had to sit for at least another 30 minutes with the cannula still in, in case of any reactions.

    My appointment was at 2pm and I left the hospital around 5pm.† I had a headache last night (which is normal), but I slept like a baby and feel fine today apart from my hand being a little sore from the cannula.† I have to keep an eye out for any yellowing of the skin which could indicate liver function problems and do a Ďbody mapí of my freckles and moles to check they donít change.† Weíre going to make that a fun exercise.† I expect thereíll lots of laughter involved when every, and I mean every, crack and crevice has to be checked, mapped and monitored.

    Iíve got my appointments for the next 4 years, so there is no chance of double booking myself.† It was unfortunate that yesterday was the only day in the whole of November I had something planned.† I was supposed to be at a craft workshop with my best friend.† She went by herself and the lady who ran it kindly gave her a pack to bring home for me to complete the project.† Bless her.

    Thatís all for now.



    2nd Tysabri Infusion 18/12/08

    I had my second infusion on 28th December.† It was touch and go as to whether I could have it or not as I woke up on the Sunday before with severe sinusitis.† After ringing my MS Nurses on Monday, I got some antibiotics from my GP.† I was told that if I had 48 hours of antibiotics in my system, the treatment should still go ahead.

    So off I went on the Thursday to the hospital, still with a headache and not being able to breathe through my nose.† We got the bus down to Newcastle (about an hourís journey) and it was packed.† I forgot it was so close to Christmas!!† So all the way down I felt sick and my head just stotted as it was so hot.† The bus almost crashed on the way down due to some stupid lad in a car thinking heíd be able to turn in front of the bus before we got there.† The driver was amazing and slammed the brakes on and swerved, but it left me feeling worse than ever.† When we got off in Newcastle I could hardly stand up.† My balance had gone completely.† So we had a coffee and I took some Stemetil and had a rest for a while.† By the time I got up to the hospital my balance was more or less back to normal, but the sinusitis was still giving me jip.†

    Once on the ward I chose my room (I was first there!) and the doc went through all the questions like last time, took my obs and put the cannula in.† My MS Nurse, Carmel, came in and she hooked up the Tysabri this time.† We then had a long talk about how Iíd felt after the first infusion.† Iíd had so much energy I was practically bouncing off the walls but it eventually disappeared and I went back to my Ďnormalí.† I told her how Iíd had a couple of wobbles during the last infusion and she sat and explained the whole resus tray to me; what is was and why it was there.† She said that she doesnít think it should be called a resus tray; it should be a recovery tray.† That made me feel so much better.

    My Mam was with me this time and we spent the time doing a Christmas quiz in her magazine and eating biscuits and drinking tea and coffee ably supplied by Carmel!!† After lots of talk of Christmas and tales about Carmelís little girl (sheís wonderful and not even 2 yet) I was ready to leave.

    I was told that I would probably feel worse with the sinusitis than I had before I had the infusion, but that was due to the Tysabri messing around with my immune system.† I also signed up to be part of a study thatís being done for the next 5 years on patients receiving Tysabri.† I wonít get any extra-special treatment, but the results will be able to help people in the future.† It was, as they say, Ďa no-brainerí!!

    I have felt worse since having the infusion, but I know why so it hasnít worried me.† My next one is 15th January, so Iíll be back after that one.

    Hope you all have a happy and VERY HEALTHY 2009!!!!!


    Jill x

    3rd Infusion 15th January 2009

    Had my third infusion yesterday (15th January) and this time there were no mishaps on the way there (Thank goodness!!!).

    My Mam came with me again and we did a little shopping in Newcastle then wandered up to the RVI.† We were there a little early, but the nurses on the ward made us a cuppa and we ate some sandwiches weíd bought.† A nice little picnic!

    As I was there early I got my obs done and my cannula put in just before my appointment time, so the Tysabri went up at exactly 2pm.† The cannula had to be put into the underside of my right forearm as this was the only vein the poor doctor could find.† I thought it might be uncomfortable but it was fine and I managed to play on my DS without a problem!!

    During the treatment a 4th year medical student, Christian, asked if I wouldnít mind helping in an audit he is doing as part of his course into the risk associated with Tysabri and my understanding and feelings towards those risks.† I gladly helped and I gave the MSRC website address and pointed him towards our diaries as a way of getting a feeling of how different patients feel during and after treatment.† I had to introduce myself to him as he isnít allowed to have the names of the patients he interviews and he was somehow convinced my name would be Julie.† Bless him!

    Once the infusion was complete and the saline had gone through and done my 30 minutes with the cannula in, I was allowed home at 4pm; an hour earlier than the other times.† Unfortunately I caught the area where the cannula had been with the arm cuff on my crutches and set it away bleeding.† By the time I got home, through horrendous traffic, I had the most awful bruise and a lump under the skin.† The lump went down overnight, but the bruise is just sitting there looking like a tartan target on my arm!!!† At least its not sore, but everyone whoís seen it does that Ďsharp intake of breathí thing and shakes their head.† I find it quite funny.† Maybe I have a warped sense of humour!!!

    Well thatís the first 3 over with and the risks of anaphylactic shock are lessened now.† So onwards and upwards to the next oneÖÖ.

    Love Jill

    4th Infusion 12th February 2009
    I had my fourth infusion on 12th February.† It was a breeze.† The doc found a vein straight away and got a cannula in and I started my infusion before my appointment time, so I was finished nice and early which meant I could get home through the awful snow!† I did get a headache during the infusion, but a paracetomol cured that.

    Iíve been noticing some slight improvements in my MS.† There have been a couple of times Iíve walked Ďnormallyí with no limp.† It only lasted a couple of minutes but it felt really strange, unnatural!!† Also my fatigue isnít quite as bad as it has been.† Iím not needing to sleep on an afternoon as much and I seem to be sleeping better at night, but I do dream an awful lot and I can remember them.† Iíve had a blocked nose for a few days and my GP has given me a nasal spray which has sorted that irritating problem out.

    †Well see how I am before my next infusion.†



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