Monday, July 16, 2012

D.Day Tysabri Infusion.

Last Wednesday I had an appointment with my neuro.  This was as a follow-up to my yearly MRI.  As I am highly impatient about these things... a week after my MRI, I went and collected my notes regarding what the MRI found.  The comment at the end was, "Several new lesions, at least five, have developed in the hemispheric white matter."  Now I have to tell you, this is the most new lesions my brain has developed since the beginning of being MRI-ed!  I turned to my husband in the car after reading this and asked, is it unrealistic to think I could have no new lesions in a year... considering I do actually have MS?

About a month before my MRI, my parents were over for dinner and as they were going off on an extended escape from winter in Perth.  We had a chat about my upcoming MRI and I remember saying, I think my medication will change.  I hadn't really thought about it until that moment.  But I guess subconsciously, I had been.  This was about two months prior to my neuro appointment.

My neuro said well, your current medication isn't working, you need a new treatment..  Good old, Mr C... I bet he thought it was a big joke every day when I injected myself and he floated around my system being completely useless.  My neuro didn't really give me a choice of medication, but he metioned Gilenya, but said it's newer, you have to remember to take it every day, it's pretty immunosuppresant, has some big side effects (lowers heart rate and increases blood pressure among others), has lots of little side effects and because it's new and they don't know the long term effects.  So Tysabri it is... it has the best results of all the drugs for MS currently.  I think my neuro likes to play it safe with me, as my MS is reasonably mild, he won't put me on more experimental, newer drugs, where risk could outweight benefit.  One side effect of Tysabri he mentioned to me was increased UTI's in women.  I thought, oh great, fab, just what I need.  He went on to say that they did research on this and found that because the women on Tysabri were feeling better they were having more sex and were getting more UTIs as a result... not due directly to the Tysabri!  So then I really did think, oh great!

Looking back... while I never actually thought about the reasons why I thought I would be changing medication.  I had noticed more tingling in different spots and it was just hanging around... more noticeable I guess. Lhermitte’s is a daily occurrence on waking for me now.  Sometimes I am very fatigued, heat totally knocks me for six and my brain doesn't work as quickly or cleverly as it used too.  I try my hardest to be calm about these things and not think about them too much, because it freaks me out and you know what... there isn't much I can do to stop it from happening.  So it's kind of a waste to worry... to get all worked up and not be able to do anything about it.  Well... there is stuff I can do and I do those things already, like diet, medication and lifestyle.  Well I am kinda failing on lifestyle right now because I am writing my thesis and it causes me all manner of stress and worry.  But I do try and combat that with exercise, yoga and relaxation.

So anyways today is the day for my first infusion at the hospital with Tysabri (or Natalizumab).  I feel like I am making a good and informed decision.  The medication is the best that is out there currently and I am JCV (John Cunningham Virus) negative.  I feel a little worried about allergic reactions...  I am not a very allergic person, so surely this is weighing in my favour.  But I think it is natural to feel worried and most normal people would be feeling concerned about starting a new, major medication which has caused severe permanent disability and death in people with the JC virus which has mutated into PML (Progressive multifocal leukoencephalopathy). 

PML is caused by the JC virus, which is normally present in many people; it's not an unusual virus at all and causes no symptoms.  It is kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus... and Tysabri is one of these drugs which specifically can let PML develop.  I, luckily do not have the JC virus in my system.  However lots of people with the JC virus choose to take Tysabri, because the benefits outweigh the risks.  The risks become greater if you have previously taken other immunosuppressive drugs, which is not me.  The latest research indicates my risk of developing PML without having the JCV and no previous use of Immunosuppressive drugs is < 1 in 111, 111.  I think that means I have more chance of having a car accident (1 in 600) or developing breast cancer (1 in 7) or committing suicide (1 in 100) than getting PML.

There are other side effects, like liver issues which I will be monitored for via regular blood tests. I am pretty sure I read that liver issues which develop due to Tysabri are reversible once Tysabri is stopped.  There is also joint pain, headaches and fatigue.  It is also reported on the internet that it can increase susceptibility to infections.  But my neuro says this is not the case... Tysabri makes you susceptible to a small specific group of rare illnesses.  But I guess I won't know what effect Tysabri will have on me until it's in my system.  I have two friends who's treatment is Tysabri and they love it.  So that gives me hope. 

Well I have to go now, because I have to change to go off to the hospital.  Sorry for any spelling errors or grammar problems, but I can't re-read right now as I am out of time.  Any of you who know me, know I like to add in things, like write a post when I have a spare moment so as not to waste any time... but in actual fact I don't really have the time to do anything.  Wish me luck.  I'll let you know how I go. xx

Ps, If you are on Tysabri, please leave me a comment with your feelings about it.  Ta.

8 comments:

  1. Thank you for sharing Lee-Anne :-) you will always have Trystans and my support. Good luck and we are thinking of you xx

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    1. Thanks for your support Lisa. Writing about these things helps me stress less and clarify things in my own mind. xx

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  2. I've been on Tysabri for six years. I am JC positive, and I did a course of novantrone. All the bad stuff. But my neurologist (who is essentially conservative,) thinks I;m doing better on Tysabri than I did on anything else, and he wants me to continue. It makes me nervous, but I trust him. Good luck.
    Timi

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    1. Timikt... I guess at some point we have to trust the people we put in charge to take care of the medical side of things. Your neuro is conservative, so he is going to err on the side of caution, right? Just looking at the same stats I reported in the above post... given that you are JC+, have used an immunosuppressive drug in Novantrone and have been using Tysabri for 6 years, your chances of PML are 1 in 90. That would make me nervous too. But you are nervous, which will make you even more cautious. Pay attention to your body and rule nothing out as being silly, ok. Do your research and be educated about your risk. I am quoting from this post... http://multiple-sclerosis-research.blogspot.com.au/2012/07/natalizumab-associated-pml-risk-june.html Good luck Timikt xx

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  3. I was on Copaxone for 2-1/2 years, and in the last year my lesion load increased by 8. That's when my doctor said we need to try something new. After subbing my options, I chose Tysabri.

    This past Monday, I started my fifth year on Tysabri. I love it. I've never had any side effects. It's only once a month. No more shots everyday...Yay! I was on it for 2 years before I had JCV test done. Luckily I'm negative and have remained that way. My lesion load hasn't decreased while being on it, but it hasn't increased either. My MS is more mild than others, but I haven't had a relapse while being on T either. Other then residual stuff from earlier attacks, I feel pretty normal :)

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    1. Hi Susanne. Wow five years on Tysabri, that is pretty awesome. No new lesions, that's all you can ask for, right? I didn't really think Tysabri reversed damage already present... people just apparently feel better on it... I feel pretty normal even after being diagnosed with MS for almost 10 years.

      The one side effect I think I've had with the Tysabri is feeling very tired, especially in the week immediately following the infusion (its only been a week)! I don't normally suffer from fatigue. In hind sight, I have had a week of late nights as well. So I hope its due to that rather than the Tysabri. Or if it is I can't wait for my body to adjust.

      Thanks for sharing and good luck. xx

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  4. I recently went for my first tysabri treatment. At first I fet no side effects what so ever. Two weeks after T I had to see a gynecologist for female issues. I'm 55 going through menopause. I feel like the sahara desert. Very uncomfortable. I was given a medicine to help. I do not know if this is permanent.

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    1. Hmmm very interesting. Did your gyno say it was the Tysabri or just part of the menopause phase? I find people with MS tend to attribute every new issue to it... Could you be doing this with Tysabri? For your sake I hope it is not caused by the Tysabri, as it has halted my MS and could help you in this way as well. Also I hope menopause goes more smoothly for you in the future. Thanks for reading and kind regards, Lee-Anne.

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