Tysabri – Miss Positive(ity)

It was like being diagnosed all.over.again.

Early March this year there I was again, hobbling into neurology, for what had started to become a monthly visit for one reason or another. Only now, I was heavily reliant on 2 crutches, in the space of a year I had gone from nothing, to a walking to stick, made the transition to a crutch and now 2 crutches. Even with those I could only shuffle along about 10 steps at a push, this should have been the point that I entered a wheel chair but no, being the stubborn sod I am, I refused to let this get me into that chair so early on in the disease .For aslong as I can walk, as traumatic as it was to see me attempt this, I will still continue to use these legs, dammit.

My (amazing) MS nurse made sure I wasn’t going to the appointment on my own (like I usually do), I just put this down to a safety precaution due to the fact that I could not walk and going dizzy when I did, so my Mum came along with me. I knew I was going through yet another relapse, what damage will I be left with this time I wonder? This will be the 3rd one within the year, but I had never entered the remission stage, and as a result of this the disability was just piling up. Since the relapse that led to my diagnosis, I have never recovered from the damage that had happened to my mobility, paralysis and vision, especially.
I sat down, height of pissed off because my life literally goes on hold whenever I go through a relapse. I am every employers dream. Although, saying this, if I had a hangover or a late night I wouldn’t think twice about pulling a sickie, but give me a debilitating disease and I shift heaven and earth to ensure that I am at work. I don’t know what I was trying to prove. MS has taken my independence both physically and financially, I was determined to be sat at my desk to hold onto the later.

‘Would you like a tea/coffee?’ Asked the nurse, she then left me and my Mum in the room to make them. ‘Ahh, do they usually make you a drink when you come to see them?’. No. I mean how many doctor appointments have you been to where they offer you a hot beverage? I knew some news was coming my way.
She returned with booklets and pieces of paper. This was pretty much the same scene to when I was diagnosed. Seriously, what could possibly be wrong now?! ‘Have you heard of Tysabri?’ The nurse asked holding the information pack. Yup, there it is, something else, this is a 2nd line treatment. I knew exactly why I was asked this. I had loosely read about it, but I had remained blissfully ignorant about it with it being the ‘last resort’ drug if you will. I was on Rebif, I was settled into the whole injection regime of taking ibuprofen an hour before I inject, relax watching TV whilst I prepare my little kit of needles etc, place an ice pack on the injection site for 10 mins and then inject away. The thing is, I shouldn’t be progressing the way I was whilst being on Rebif, it just wasn’t keeping up with me. Always one to do things to the max, get straight to the point. Only with this, I would have been more than happy for it to take its sweet time for me to be sat here being offered this treatment. My nurse explained to me about the risk of PML (Progressive Multifocal Leukoencephaopathy – hats off to anyone who can pronounce that, my spell check doesn’t even recognise that word!) , which is a fatal brain infection that usually causes death or severe disability and can occur in people taking Tysabri. The JCV test can help identify the presence of the virus that can lead to PML, as this was being sent to a place in Denmark, I had the test done at the end of the appointment and I was given 2 weeks to have a think about it, do my research etc whilst I was waiting for the results to come back. To be honest, I pretty much made my mind up straight away, regardless of the result. I say this, I didn’t read too much into it if it was negative. I mean, this drug has the potential to give me my quality of life back! The benefits outweighed the risks for me.
I tested positive for the JC Virus. Great, great,great,f*cking fantastic, I have gone form flu like symptoms with Rebif to death. My MS nurse explained all of the risks for PML with me being positive for the virus; that I will be closely monitored with regular blood tests, MRIs (neck piercing has been perminately removed due to the ker-razy amount I have – not impressed dot com) and id have to stay for an hours observation after each infusion. If I was JC negative, it is 1 in 10,000 risk of contracting the virus, but being positive with already having my immune system supressed with the Rebif injections – it is a 1 in 556 risk. Loaded with all of the information, the benefits still outweighed the risk for me. I have taken that risk, but I can only remain on Tysabri for 2 years. With this being the most effective, there isn’t much else after this. Although, not all doom and gloom, a couple of weeks ago a new treatment ‘Alemtuzumab’ has been approved and available on the NHS; this too is an infusion but to be honest, I am not thinking that far ahead to when the time comes to come off it. Who knows what will be available in 2 years medicine wise.

I had to ‘wash’ my system out and come off of Rebif for a couple of weeks before my first infusion. I felt so vulnerable not being in control of my MS. Now, as much as I despised having to inject, and my body being covered in bruises, it had become part of my life and built into my routine. THAT is what I miss about it. I had always rotated my injections between my stomach, legs and buttocks, and my stomach was my ‘favourite’ place to inject as it didn’t hurt or leave me with a big arse bruise to work (my belly fat came in handy to fight evil!). So when the time came to inject for the last time, I ensured it was in my favourite place. What a weird favourite place I hear you cry! But with anything you don’t want to particularly do but have too, you do anything to get yourself through it’. Only with this, I couldn’t procrastinate (one of my many skills). If anyone reading this who is/has been on Rebif, you know the bruises can be quite epic and I was left with 18 of the little shits over me. Sexy and I know it has been frequently used throughout all of this palava.

Riiiiiiiight, final injection done, now to be ‘clean’ for 2 weeks. I felt absolutely lost. I was so scared with not being on anything to manage it all. My MonSter was let out of the cage, what’s the bastard going to go for? Reality is, I was only off them for 2 weeks, it was doubtful anything O to the M to the Gee was going to happen. I was already near enough immobile. They weren’t doing much for me due to my progression anyways, it was more of a mental state knowing that there was at least SOMETHING flowing through me.

Infusion day! I was an absolute bag of nerves (damaged nerves, but nerves none the less), I was so excited and scared at the same time. Is this going to hurt? Will I feel the medication going through me? Who will I be sat with? OMG lunch, can I eat whilst sat there? (Important things) More importantly, will this halt my progression? How will I feel? Can I remember how to walk if it gets me out of the crutches? My infusion centre is in the Hospital, I was told there are 5 other people with MS taking Tysabri and who I will be sat with. I walked into this big room of various people hooked up to a drip for various treatments (Chemo, Kidney Dialysis etc), which I wasn’t expecting. I hobbled over to my MS corner, I was a newbie. I hate being the newbie, I tend to make a rubbish first impression and a worse 2nd, it is usually by the 10th meeting you will get to know and love the awesomeness. I was the 1st one there, keeno. Nah, just keen to walk, yo! The nurses made me feel so comfortable and calmed me down, talked me through exactly what was going to happen, checked my temperature (which was embarrassing to say the least as I was dripping in sweat from nerves – see, 1st impression – I never disappoint). Now, I do like to think that my pain threshold is quite high with the multitude of piercings, tattoos I have had and and then undergoing lazer treatment to remove said tattoos, have had numerous blood tests over the years, but why was I soo scared of that needle and capita going into my arm?! I have put this down to the fear, the fear of the unknown and having it remained in there for a couple of hours. Machine was turned on, nurse talkigng to me ‘how do you fell’ she asked. ‘Fine, until the medication starts to go in’ I replied. ‘Hannah, look at the tube, it is already flowing into you’.WOW, all of that stress and panic over nothing! I was even offered a coffee from a nurse which wasn’t then followed by bad news. SCORE. I was sat there for 2 hours and didn’t feel a thing, I was shitting rainbows. This beats injecting any day! I say it didn’t hurt, the painful part was when the plasters holding the needle in were taken off. My God, dare I compare that to labour with having not been through it myself? Baring in mind, I stump my toe and compare it to labour too. It just hurt. I got to talking to the others whilst sat there in our MS circle and yes, I was the youngest – a newbie and the baby of the group. One thing I did notice tho is that all but one person (who was in a wheel chair) didn’t have a walking aid, and then getting to know them, 3 of them entered here with walking aids. Lovely group of girls, we all come from different walks of life but one thing we all know our shit about. Multiple Sclerosis. It is so nice being able to speak to someone who knows exactly what it is like.

Within a few days, I was able to walk with one crutch, a week later, I was able to walk (shuffle) unaided for 10/15 mins. I carry my fold up walking stick with me in my bag and I should be using this after 10 mins max as I do look like a drunk, but you know how stubborn I am, I will persevere until I am bought to my knees. I am still unbalanced on my feet, hobble, no coordination, look slightly pissed, which is great fun when people look at me walking down the street judging away; not so fun when you walk up to a pub stone cold sober. I’ve my 3rd infusion coming up next week. About 5 days before my infusion, the drug is wearing off and my crutch has to come out. No wonder people get confused when they see me walking unaided one day, crutches others, stumbling the next – this disease is so complex. Although, I do know that without this medication, I would be in a wheel chair right now. I am so thankful to be able to walk the distance I can and do what I can RIGHT NOW. I am in the process of moving into a more suitable accommodation with disabled access – that’s as far in the future I am thinking with all of this and hey, I get a new home, which I will set for life in (smiley face), that and getting my free bus pass – im a bus wanker for free. Whey-hey. If anyone wants to know where il be every 4th Wednesday at 12 – I be getting my walking juice.

MRI selfie. Always a first. Certainly isnt the last.
MRI selfie. Always a first. Certainly isnt the last.

One thought on “Tysabri – Miss Positive(ity)

Add yours

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a free website or blog at WordPress.com.

Up ↑

%d bloggers like this: