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

    Natasha's Tysabri Diary

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    Natasha

    I was diagnosed with RRMS in Oct 2008 after a 6 month spell of strange symptoms with my walking, which finally culminated in double vision, balance problems and a stay in hospital. The following year saw me relapse 3-4 times and towards the end of 2009 I decided to give Rebif a try. So by February 2010 I had started, and within 2 weeks had a very disabling relapse that lasted a good 8 weeks before I began improving. From then on, for the next year other than the regular symptoms I felt back to my old self! But in May 2011 I had another one, closely followed by my worst one to date in October 2011- I couldn't walk, or even hold a glass of wine, or cut my food up with a knife and fork- ruling out my two favourite hobbies!

    I was fed up- so I stopped the Rebif and was told I qualified for Tysabri pending another MRI. I can't say I'm not concerned about the long term implications of this drug but the promise it has given to so many people makes this such an exciting and positive time in my life.

    © Multiple Sclerosis Resource Centre

    12th infusion- December 21st 2012

    I thought I'd wait a few months before doing another diary update because there hasn't been much change from one month to the next. What that means is that Tysabri is doing its job at keeping relapses at bay; so different to how I was doing just 1 year ago. So this was my 12th infusion and my annual JC virus test was due. Another nerve-racking few weeks while I wait to receive the results!

    Symptoms haven't changed much, I began getting this awkward cramping sensation in my little toe in October, so I've had to start Nortriptyline because it was preventing me from getting to sleep and generally making me miserable. Have to say I don't think the medication is doing that great a job at reducing the pain :(

    For the first time on Tysabri, the sickness I can feel after the infusion didn't just last that evening, it continued for another 2 days and really made me feel unwell. Was very happy that it went in time for my Christmas Day lunch! Other than that, it all went very smoothly as usual and I continue to be amazed by the change in my quality of life thanks to Tysabri.

    8th infusion - August 31st 2012

    Not much change from last month in terms of symptoms - fatigue keeps rearing its ugly head every few weeks. I'm beginning to wonder about doing some form of exercise, but walking my dog is enough to exhaust me and leaves me with such painful legs. My partner is a personal trainer but he's accustomed to training clients with greater endurance, so I'm not sure how to train myself safely and effectively. Definitely next thing on my list though.

    Infusion went well; I'm lucky enough to feel really good after the infusion, so after my post-infusion treat of a tasty lunch, I chose to go work at a clients office in the afternoon. I've noticed an improvement this infusion with one symptom that appeared last month- I am no longer waking up in the middle of the night due to bladder weakness, which means I have been getting much better sleep.

    7th infusion - August 3rd 2012

    I only just realised when I was going for this month's infusion, that I had forgotten to update you on last months… so I'll do a very quick overview to bring you up to date. My 6th infusion was on the 6th July; June had been a stressful month, leaving my job at the end of the month and planning my next step. But on a happier note, my boyfriend proposed to me on our anniversary in the New Forest and then whisked me away to Bruges for a long weekend. I was completely shattered after all that excitement!

    So infusion No6 went ok. For a few hours after the infusion, I feel almost tingling with energy, it's great! Every month, you need to fill in a form to comment on if there have been any changes in your condition such as becoming unwell and any physical difficulties. I tend to not take this too seriously and tick 'no' to all as it can change so much within a month. That was until a nurse said 'Oh that's great Natasha, it's working well for you'- it made me realise that they do read through these files and the neurologist may refer to them during my next appointment. So it's worth noting on there any changes so there is some record of it at the hospital.

    Mid way through July, fatigue hit me and completely derailed me. Luckily now I am self employed, I can rest when I need it- sleeping 10 hours each night still isn't enough. Pins and needles and heaviness in my legs seem to be a problem that is still not getting better, the pain in general has been making making me totally miserable :(

    So I've just had infusion No7- the good thing about hitting your 7th infusion is that you can now have the saline drip for 1/2 hour instead of an hour. The early morning slot is slowly beginning to fill up with people- testament to how popular this drug is. Lovely bunch of people, it's great to have regular conversations/updates with people of a similar age to me. I haven't seen much improvement over the past few days, but I do hope the fatigue disappears very soon; I just can't motivate myself to get out of bed in the morning and I can't focus at all on my work. Fingers crossed it will go very soon.

    5th infusion- June 8th 2012

    I was looking forward to this month's infusion- May was another one of 'those' months! I made a fairly huge decision to leave the company I have worked for for the past 5 years; there were many personal and professional reasons but one incident was the catalyst, and made me realise the stressful situation I was myself in was doing nothing for my health. I'm determined to get the right work/life balance. Time to get started with my dream of my own design agency!

    Some of the symptoms that returned recently hadn't disappeared after the last infusion; they are really distracting and quite painful at times. It's been nearly 2 weeks since the last infusion and not much improvement with this one. Tysabri will only help my if I help myself and I'm sure that my new work situation is going to do wonders! Infusion went fine, they have changed the time slots so I met some new people. One of the guys there is one of the most inspirational people I have ever met. His story is quite literally unbelievable; so much has happened to him over the past 6 months, yet he maintains such a positive outlook. Amazing person!

    On a separate note, for anybody taking vitamin D supplements- I was advised by the nurse from my latest blood test results that my calcium levels were quite high, I had being taking a high dose of 6000IU per day. I definitely think it's worth asking a nutritionists advise regarding supplements, that's what I'm going to do now…


    Take care!
    Natasha

    4th Infusion- Friday 11th May 2012

    The past month has been really incredible for me, I've never been so busy and more active- one evening I even ran up the stairs two at a time! Believe me, that hasn't happened in a long time! But as the saying goes 'what goes up, must come down'… I'd been overdoing it and unsurprisingly, experiencing some sensory symptoms; buzzing in my legs and hands and problems with my right leg. Oh and spasticity- very annoying and embarrassing at times, I must have looked rather odd sat on the train opposite someone, when my leg started spasming uncontrollably!

    I've read a lot about people experiencing less energy and a return of symptoms the week their infusion was due, so I put it down to that. When I mentioned it to the nurse, she told me that Tysabri stays in your system for up to 3 months and it was unlikely. Ah ok, so I've just been overdoing it.

    Infusion went well other than difficulty getting the cannula in. Next time I will bring a hot water bottle to keep those veins up! Normal side effect of nausea in the evening that was gone by the following morning. I have to say this time I didn't notice any improvement, but this could be due to many factors. I was having a relapse on average every 3-4 months and based on this pattern I would be due one about now; with how I'm feeling it's possible the Tysabri is controlling an exacerbation that could otherwise have been much worse. I'll take it easy for the rest of this month!

    Natasha

    3rd infusion- April 13th 2012

    I'll quickly update you on my progress since the last infusion- approximately 1 week after my 2nd infusion I was able to start driving again. Very exciting as I had a new set of wheels to try out… an automatic which has proven to be an absolute godsend! I didn't feel 100% back to normal but these things seem to be taking longer with each relapse. Energy levels were still very low, I was tired after 3 hours of being awake, and needed frequent naps.

    I had my 3rd infusion last week and it was quite an important one in my opinion. Many people claim they start to see the benefits of Tysabri at this point. So again, no pressure there Tysabri but I'm counting on you!

    The infusion was uneventful, I left the hospital feeling very tired again. I need to work out if this is because of the excitement building up to it or a reaction to Tysabri.

    If that's the worst of the symptoms, I can certainly handle it!

    The next day I felt like I was literally buzzing with energy. In all honesty I haven't felt this way in around 18 months, so I took full advantage. I even tried going to the gym, which proved a bit too much, but I am so happy to have returned to a little bit of my 'old' routine.

    The past week has been quite testing for me; lots of stress and busy days (and nights) at work. But whereas before I couldn't function properly beyond 6pm, I was able to keep working until I chose to stop. One thing I would say is that it's difficult to know where my boundaries are but am aware I need to work it out for the good of my health.

    So there you have it… another brilliant month on Tysabri for me!

    2nd Infusion- March 16th 2012

    I was really looking forward to my 2nd infusion- not least because I received the results of the JC virus test and I was negative (happy days!). I had also not recovered from the relapse that started the day after my first infusion- steroids didn't help, and the Tysabri wasn't really in my system yet. So I arrived at the hospital and the fantastic nurse had organised for me to see my neurologist to discuss the relapse. We agreed that it wasn't worth trying another dose of steroids, and to give the 2nd infusion a shot at helping.

    Infusion was uneventful and I had no major symptoms afterwards (which I love, hated the side effects of Rebif), I was just a little tired. I noticed in the car on the way back that I had some feeling in my left heel- I wanted to shout it from the rooftops! It got me really looking forward to the potential for improvement with this relapse thanks to the Tysabri.

    A few days later I could walk without my stick, and now just waiting until I have more feeling in my feet so I can start driving. I also caught a bug a few days after the infusion (thanks to my lovely boyfriend…) so once that clears up, I have no doubt the Tysabri will continue to work its magic. My thoughts right now are that Tysabri is a miracle worker, and am wondering why I didn't try it sooner!

    1st Infusion- February 17th 2012

    From the date I was approved for Tysabri, I waited just one week until my first visit- making up for the months of waiting to get an answer from my neurologist, I was over the moon! I arrived on Friday 17th February, covered with Emla cream all over my hands and arms (the nurse laughed at just how much I looked like a basted turkey covered in clingfilm!). Probably the part I was most worried about was the cannula but if you're at all like me, I recommend using the Emla cream to put yourself totally at ease.

    Firstly we went through the forms with my neurologist; I had the support of my wonderful mother there, who I couldn't have done this without. I think my mother was more distracted by my neurologist at the time than the form filling (I must take note for future appointments!).

    The infusion started very quickly; I was waiting for the fireworks outside to mark this important occasion but it rapidly dawned on me that this treatment was so routine and the infusion itself so easy, I certainly didn't deserve any special treatment! After an hour the Tysabri was replaced by a saline drip for one more hour to flush the Tysabri well into your system. I left with a slight headache and in the evening felt slightly nauseous but that really was the extent of the symptoms.

    The following morning I woke up with total numbness in my legs and feet and balance issues- I was concerned about PML, certainly not based on any facts and rather just an irrational fear that I could be the exception to the rule and develop it so early. After trying to get hold of a nurse or doctor to reassure me (it took a few days which felt like a lifetime) my mind was put at ease by a lovely nurse who told me the first infusion and onset of this relapse was just an unfortunate coincidence. So please be rest assured that you have nothing to worry about in regards to developing PML after your first infusion. The nurse also told me that I can still have steroids whilst on the Tysabri. So with the relapse worsening, that's exactly what I did. I finished the 5 days course of steroids yesterday and look forward to seeing an improvement soon.

    Today (Feb 29th) I am going to have the test to find out if I carry the JC virus. I'll update you with results hopefully by the next infusion- and in the meantime will try to rest as much as possible- massages and plenty of TLC all booked in to my diary!

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