Mandy's Tysabri Diary
| Date of birth:
| Main symptoms:
Fatigue, dizziness, weakness in legs (mostly in left), mild spasms in left leg, and general fluttery sensations down legs when I am overtired. Cognitive problems which come and go.
1997 (self diagnosed 1995, symptoms started 1992/3)
| Type of MS:
Relapsing/remitting though I was on the cusp of becoming progressive prior to starting Tysabri
| Tried medications:
Copaxone (allergic to the formulation), was on Rebif for about 6 years and came off that to go on Tysabri as it had stopped being as effective.
| Current medications:
Serc (beta-histine) and Cinnarazine, both for dizziness
| Country of residence:
Okay to be contacted?:
Yes - via MS-UK
My first proper relapse was in August 1993, and over the next couple of years the strange “fuzzy” feelings came and went at a frequency of about one/two per year, and to be perfectly honest I didn’t really worry about them. After realising what could be wrong in 1995 I was referred to a Neurologist, but whilst he said that it was more than likely MS that I shouldn’t push for a diagnosis just yet.
In 1997 after a rather alarming relapse I had an MRI scan and subsequent MS diagnosis at Walton Neurological Centre in Liverpool. I started drug treatment in 2002, and whilst the Rebif has helped, my neuro has decided that it is time for a new tack and has suggested Tysabri.
Last year I had a change of neurologist, the guy that I had been with all the way through my MS journey having emigrated, but I didn't get to see him until December 2012. Being new on the scene, so to speak, we went through my entire MS history detailing all the myriad of symptoms that I had encountered over the years. We discussed my Tysabri treatment at some length, as I was coming up to 4 years on the drug, a factor which increases my chances of contracting PML quite considerably if I am JC positive (the virus that causes PML). It was decided that I would have the blood test.
I had my blood test done at the beginning of January, though in my head I was rationalising the idea that if I was to test positive then I would come off the drug, though hoping that I would be negative and so there would no be a need to come off at present. When I first started on Tysabri, the difference in my MS was amazing, but I had noticed that it was not being as effective for me over the past year or so and so I rationalised that the risk of PML was starting to outweigh the benefit that I was getting from Tysabri. My neuro called me a few weeks after the test to let me know that I was positive, and a few days later after finally thrashing out my decision I called him to let him know that I would come off the drug and go back on to Rebif. It is my understanding that if the Rebif is not helping me, then I will be a candidate for Gilenya.
I have now 'missed' two Tysabri infusions, as I need to get it out of my system before I can start back on Rebif which arrives next week. To say that I am tired, is an understatement. Absolutely shattered is closer, and I the fuzzy feelings in my feet are back and my right leg is playing up a bit. But anyway, hopefully once the Rebif gets back in my system I will see an improvement :)
Oh my! Where to start? It has been months since my last diary entry.
To be perfectly honest, I have lost count of how many infusions I have had. I have been on Tysabri now for well over 2 years, so it must be around the 28 mark. I will be having my next one this week, so I will check.
Still feeling great, and much, much better than I was before I started on the treatment, but I must admit to a bit of sadness that the euphoria (for want of a better word) during my first few months did not last. Whilst I am generally okay in walking about, I have found that my balance and dizziness seem to have worsened, though to be honest I do find that this is mostly psychological. I fear that I am going to fall, and so feel as though I am going to. I ‘outpsych’ this fear as much as I can, but it is rather a problem. Mustn’t grumble though, I dread to think what state I would be in without the Tysabri.
I am approaching my third year on Tysabri, and I am still not concerned about PMSL, sorry, PML. I know that there is a test for the JC virus now, but quite frankly I am not at all interested in having it. For one, a negative result only means that you were JC negative on the day of the test, and for another a friend of mine that had a JC positive result a few months back, is now testing JC negative. Hhm. I would rather not know, and just keep an eye on my health.
The big, BIG news is much more positive though. When on a Tysabri regime, you have to have yearly MRI scans so that your neurologist can monitor the effectiveness of the drug. I have now had 3 (one at the being and one each at the yearly anniversary) and am very pleased to report that my last scan showed that there were no new lesions, even though my lesion load was ‘significantly high’. My mother burst into tears when I told her this. Mothers...
After the great feeling that I had after the 5th infusion, I was really looking forward to my 6th dose.
Arrived at the hospital early (my appointment isn’t until 10am, but I find that setting off just before 8am means that I can get a parking space easily and have breakfast at the Bistro at Walton before I start!) Went through the usual pre-treatment tests ( and was told off for not drinking enough water to flush my system through – my first urine sample came back with a high WBC count, but the second one was fine probably thanks to the jug of water that I had drunk!) Note to self and others: make sure that you drink lots of water the day before to ensure that your water works are clear!
Whilst I felt okay after the Tysabri, I did not have the same feeling of well-being that I had had after #5. Still mustn’t grumble as I feel a lot better than I did before I started the treatment.
In preparation for dose #7, I spent the evening guzzling water! This paid off as my urine sample came back clear at the first try, and number #7 went ahead. Though the actual infusion was not without its problems. After trying both my right and left inner elbows as places to insert the cannula, eventually I had this placed in my wrist. Ouch! I was concerned that this was not securely placed either, but the infusion went ahead without a hitch. The area surrounding the insertion site was very tender afterwards, and the following day a huge bruise was covering most of the back of my hand. I knew it wasn’t in fully! I also seemed to acquire a slight cold, and so spent the next few days feeling very rough.
However, I then went on holiday for a week in September, and am pleased to report that I did not use my stick once. On one occasion I actually walked a total distance of just over 1km (though admittedly this was interspersed with regularly rests and lots of French coffee!) Was totally wiped out the next day, so took it easy to recuperate. Couldn’t help feeling very pleased with myself though.
Tysabri #8 is next Wednesday, and I hope that all goes smoothly this time...
As nothing eventful happened during or after infusion #4, I decided to wait until after #5 to provide my next update.
I was called in a day early to have Tysabri infusion #4, as the day ward were going to be very busy on the scheduled day. So I went in that afternoon, which was a change from the normal early start that I have on a Tysabri day (and meant that I would be able to have a lie-in the next day!) Got to the ward at 12.30pm, did a urine sample, had my blood pressure checked, and then just as I was about to be checked over by the doc, was asked to do another sample as the lab had lost the first one. ?!
Everything was fine, I wasn’t pregnant (phew!) and eventually they put the cannula in and took the blood samples. Eventually at around 4.30pm the Tysabri was delivered to the ward and I started my 4th infusion. Everything went smoothly, and even the traffic driving back home was smoothly flowing too!
The fifth infusion took place 4 weeks later, with no changes to the due date on either side. Got to the ward early, and it was nice and quiet. There was a lady there who had been in the day before, and she said that it been packed the day before. Usual checks took place, and the young doctor came and did the strength and sensation checks, and everything was fine. He came back a few minutes later and said that my urine was showing a slightly raised WBC count and did I want to go ahead? I said that it was fine, as I didn’t feel under the weather. He came and put the cannula in, took my blood samples and we chatted about the Stopford Building at the University of Manchester, which is where I used to work and he did his medical degree.
Then, to my utter shock, the Tysabri arrived in the ward, and I started my infusion at 11.15am! The Tysabri usually doesn’t arrive until around 1pm – I said it was quiet! Near the end of the hour’s infusion, I thought I could hear a familiar voice – and sure enough my neurologist was down in the ward with some people. Just after the nurse had switched my drip on to the saline solution, he came over and we chatted about how things were going. He said that he would like to see me a year after I had started the Tysabri so we can discuss how things are progressing, and that as he had seen me today that there was no need to keep my appointment to see him in August.
Now this is where it starts to get a bit strange. After finishing in the ward, I walked back up the hospital corridor to the exit. I felt rather weird – walking was far less of an effort, and I felt so much more confident on my feet. When I got home, getting out of the car (and I am driving myself to the appointments now) was far easier too. Later that afternoon, I decided that I was going to go to town. Walking across the car park with my stick, I felt confident enough to walk without it and so I folded it up and put it in my bag. I then walked around a few shops, back to the meeting place where I was due to meet my Mum and this was the first time that I actually sat down. Normally I need to rest quite frequently even on such a short trip, so this is a definite improvement. I still feel good today (the day after) and I hope that this feeling is going to last a while. I am really looking forward to Tysabri #6!
Tysabri infusion #3 was due on the Thursday, so when I woke up on the Monday with a slightly sore throat and the sniffles, I was a bit worried as to whether I would be able to have the infusion. By Tuesday my throat was raging, and I was sniffling for England! This had not improved by the Wednesday and so I called the Walton Centre day ward and asked whether I should rearrange my appointment. So my appointment was changed to the following Thursday. I went to see my GP who said that as it was likely a viral infection and I did not have a fever, there was no point in taking antibiotics and that it would probably clear up by itself. Plenty of fluids and paracetamol.
The infection did get better over the next few days, but a few days before my new appointment I got what can only be described as a feeling of feathers stuck in the back of my throat. I called Walton again the day before my Tysabri, and was advised to come in anyway, and the doctor would assess the situation. This I did, the doc was happy with my state of health (my leg muscles were strong I was told!), and so Tysabri #3 went ahead.
This was the infusion that I was rather dreading, as I had read accounts of people who had developed a reaction to the drug during their third infusion. Luckily everything went well, no lumps or bumps, no going bright red and no difficulty with my breathing. Yay!
So, now I have to wait for my next infusion in 4 weeks time. I can tell you this; the four weeks in between infusions seems to fly by! Update, it is now a over a week since my third infusion, and I can quite honestly say that there is a marked improvement in my general well-being. I feel more alert, and whilst there has not been a vast improvement in the length of time that I can stand and walk around, I feel a lot more confident on my feet.
The feelings of wellbeing that I had after my first dose of Tysabri, unfortunately, were not long lived.
After a few days I was back to feeling my usual fuggy self, though the fuzzy feelings in my leg that I had had pre-treatment that went afterwards did come back, but were nowhere near as bad as they had been. And after a week or so they had worked themselves out completely. By the end of each day I was feeling rather spaced out and light-headed (nothing new there!), but it was nothing that I couldn’t handle.
The actual infusion of my second dose of Tysabri went well, but the whole matter was not without its trials! About 2 weeks after my first infusion, I received a letter telling me that I was booked in for my next one the following week. “Hhm”, I thought – that is only 3 weeks after my first. So I called my neuro’s secretary, and sure enough she had got the date wrong, and she rescheduled for the week after.
When I got to Walton Neuro Centre on the day of my second dose, I gave a urine sample and waited for it to be tested. I had noticed that my heart rate had been significantly up the night before, and it was still quite raised that morning. The results of my sample came back as having a raised white blood cell count, and so I had to repeat it. The second one also came back as a positive for WBC, though not as high as the first, and so to be on the safe side I was sent home whilst the lab did a full culture on the sample to check for any micro-organisms. So major panic that evening looking up PML on the web, and reassuring myself that I had none of the symptoms!
Walton called back the next day at lunchtime, and told me that my sample was clear and to come back in. I got there early for my 2 o’clock appointment, and had to sit and wait for a couple of hours for the Tysabri to be made up and sent down from the lab. I had a nice chat with a lady who had just had steroids and was waiting for an infusion of Mitoxantrone. When this arrived I was rather shocked to find out that it is a deep blue colour! Kept an eye on the woman to check she didn’t go blue too!
Eventually my Tysabri was ready and the infusion started. Everything went well until the saline flush through when my drip decided that it was no longer going to drip! It wouldn’t even drip if the pump was attached. After the cannula was flushed, it started dripping freely. Finally got home at around 6-ish.
It is now the day after and I am feeling fine. Quite good in fact, so I am off to town for a spot of retail therapy.
Update on the above – I found that I could wander round the shops for longer. So Tysabri does seem to be having a positive effect on my health but not on my bank balance!
When I saw my neurologist on the 23rd January, we discussed Tysabri as Rebif seemed to have come to the end of its usefulness. I read up on the drug (especially the dreaded PML!) over the weekend and called on the Monday to say that I was happy to change medication.
When I hadn’t heard anything after a few weeks, I called and was told that we were waiting for a MRI. After a few more weeks, I called again and was told that she was just in the process of writing off to request the MRI scan. A day or so later I got a telephone call to say that an appointment was being sent out 1st class and to make sure that I was there on time as my MRI was booked for 15 minutes later, though it would be better to turn up early. Oh joy! I have now got to get from Warrington to Liverpool in morning rush hour traffic!
Set off early on the morning of the scan, and got to the hospital well before my appointment. I had my BP and temperature taken, and then I was told that they were ready for me in the MRI scanner. Back to the ward, did a urine sample and was surprised that they wanted me to stay around. It turns out that providing my urine sample is clear, I will be starting on the Tysabri today! Gulp! After waiting around for about an hour, a call then comes down to say that there is no Tysabri available. I am told that they will try and scrounge some from another hospital and they will call when they have got the drug.
I was called the next day, but I couldn’t go on the day suggested and so the Tysabri was scheduled for a week later on the 18th March. So now I had a whole week to work myself up in to a state!
Set off early again on the day of my first infusion, went through the same pre-infusion routine (BP, urine etc. ) to check for any sign of infection. Must remember to ask next time what happens if they aren’t clear. After waiting for a few hours for the drug to be made up and tested, my BP taken again, I was finally hooked up. The infusion lasted an hour, and I had no side effects except for my hand feeling rather cold. Afterwards, I was given a saline flush through, my BP was checked again, and I was allowed to go home.
Due to not sleeping at all well the night before, I was absolutely shattered. Later that evening, despite still feeling very tired, I did notice that I was feeling more alert than usual. Less brain fog! Is this wishful thinking? To be honest I don’t care if it is! Slept well that night, and though still feeling tired the next day the feeling of alertness remained.
It was not until the second day after the infusion that I realised that the numb tingly sensation that had been in my left leg had almost gone! This is most definitely not wishful thinking – it is a result! I know that this is very early days in my treatment, but I am feeling ever so positive.