Tuesday, July 31, 2012

Tysabri D.Day... Mostly Uneventful!

So a couple of weeks ago, I had my first infusion of Tysabri.  The decision to swap my MS medications was made in a meeting with my neurologist that lasted perhaps 15 minutes where I was without my most trusted sidekick, otherwise known as my husband. 

I predicted the change, but I didn't predict it would happen in a matter of days.  The previous night I slept for a grand total of 3 hours... so pretty much my head was spinning wildly out of control at the news.  I had previously given blood for some research, which tested for the JC virus so this was not a hold up. I could have been admitted for the infusion within 3 days.

However as my husband, Ryan was on the other side of the country and he was none to pleased that I would one, make this decision alone and two, attend the treatment on my own, I pushed my appointment back an extra 2 days.  As there really wasn't a decision to make, no other medications were on offer and the Copaxone was not working, he didn't have any input... although believe me, we rather "passionately" discussed it over the phone.  In hindsight I am glad I waited for Ryan to hold my hand... I would have been a sniffling mess without him.  We do all of my MS stuff together.  He is my hero, voice of reason and my rock.

So what happened?  Well once we made it into the Ivy Suite, we had some paper work to fill out.  Ryan filled out all the lines I missed due to distraction.  I was given a wristband since I was being admitted for the afternoon.  I felt a bit at ends... I wasn't sick, yet I was being admitted. Given the short notice I was slotted into a time not reserved for MS patients.  Instead I was with people getting chemo.  That certainly helped to put my plight well into perspective.

Finally after sitting around for an hour, we were ushered into the ward.  I got to sit on a very comfortable chair, quite reminiscent of a dentist's chair, except much cosier and without the horror of an approaching drill!  My nurse was a lovely young blonde woman, she checked my knowledge about what was happening and I felt like I was in good hands.

Finally the time came to put in the cannula.  I got my arm out ready, no problems, as I've had a million blood tests, given blood, had babies and been jabbed with vaccinations, not to mention injected myself daily for 18 months (or about 547 times).  When my lovely nurse reached for my hand I was a bit confused, but not concerned.  Apparently they like to put the cannula in your hand because it reduces the risk of pain and damage caused my movement at the elbow.

After a hot pack was allowed to do its work on my hand.  My lovely nurse started with the cannula.  She very gently held my hand.  I looked away because I really didn't need to see her sticking me with a big pointy thing!  After about 5 minutes though, with a little bit of stinging I looked over and asked what was happening.  Apparently the veins in my hand had disappeared in fright!!  They had collapsed.  She tried another vein to no avail.

Another lovely nurse was enlisted.  On her first attempt, all looked good.  They pumped in some saline and asked if I was in any pain, because if they weren't in the vein and pumped in saline I would feel it.  I questioned them about the pain, as I have quite a high pain threshold and thought well what if the pain I could be feeling I just brushed aside as a stinging sensation that I didn't need to be concerned about.  A shaky consensus decided that the cannula was in the vein and nurse number two wandered off.  Nurse number one turned up the saline drip and pressed on my vein and then suddenly I knew what type of pain they were talking about.  Attempt 3 failed.

Nurse number one left and nurse number two returned.  Note no more "lovely", they were still very lovely, but my anxiety had risen and I was no longer really feeling the loveliness.  This time she tried my other hand... still no go.  The veins in my hand refused to play.  Was I sending them an unconscious signal to be difficult?  I'd never had any problems with drips before... and when those were done while having my babies, the nurses took much, much less care.

After a break a completely new nurse arrived.  She was Scottish, chirpy and "lovely".  She decided against using my hands, instead going half way between my wrist and elbow crease.  My nerves had begun to get the better of me... so I was expecting some pain.  She asked me to hold my arm up above my head for a minute or so and then bam the cannula was in!  No problems at all.  Thank god is all I could say... I had started to have visions of them saying, come back tomorrow or you can't have Tysabri at all because we can't get a vein.

The rest is very uneventful.  They started the Tysabri infusion and I felt.... nothing!  I sat for 2 hours laughing with my husband watching Bad Teacher on our iPad.  I had a couple of toilet stops because I had drunk a litre and a half of water in an attempt to hydrate my veins open.

When we got home, I felt tired after the experience.  Yet I felt well enough, so we went out for dinner with the kids anyway.

Over the following week, I noticed that I felt incredibly fatigued (along with some major bruising on my hands).  I am not sure if the fatigue was the work of the Tysabri or all the late nights I was having and allowing myself to be tired after a week of my husband being away.  It didn't really feel like normal tiredness, but time will tell, as there is only two more weeks until my next infusion.

So how do I feel about having this major medication infused into my body?  Well mentally pretty good considering it has killed people.  Right now physically I feel well as well.  I feel good about the fact I no longer have to inject Mr C every day, not that I had a problem with injecting myself.  I feel really great that I am on a medication that other MS-er's on a Facebook page (I Hate Multiple Sclerosis) didn't note any horrible side effect in relation to my inquiring post and that nearly all of them said they had no new lesions, some of them for years.  Which means no disease progression - hooray!  Do I dare to dream?  Soon I hope.

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.