Tysabri - hope or fear?

I’ve been on Copaxone now for 11months, and in that time have had at least 2, if not 3, relapses – the same rate as I was having them pre-Copaxone. After pointing this out to the M.S nurse a couple of weeks ago, she said I needed to see the neurologist and booked me the appointment, which wasr yesterday. The M.S nurse had warned me that it would be likely that the next step to be considered would be Tysabri, or Natalizumab as it is also known. I had the usual neurological examinations which are becoming all too familiar now. Hop on one leg, walk in a straight line, touch my finger then your nose – I often wonder if it’s the same test used by the police to see if drivers are inebriated. I hope not because if I had that test they’d probably decide I was off my face. It annoys me how the neurologists never seem to comment on the results of these various tests. I had particularly wanted to know if my reflexes had ever come back after I lost the leg ones during my first relapse. Someone did point out to me that I could just ask for his findings, so this time I did ask how my reflexes were. He said “a bit frisky but not too bad at all”, so I’m still not really clear as I am not sure that one’s reflexes being frisky is a proper medical term!

Anyhow, once I was sat back on the chair, shoes and socks safely back on my feet, he got straight on to the business of discussing Tysabri. In order to be eligible for it, I need to have had two disabling relapses in one year that can also be seen on MRI scans. So I am having another MRI to check if it shows new activity since the last one. He explained that as long as it shows some changes I would be eligible, the lesions don’t have to be actually active at the time of the scan. So in an odd way I am now hoping for activity on the scan to show. It does seem a bit arse about face to be hoping for new damage to my myelin, but that’s the way it goes I guess. It’s funny, even after being told by the neurologist that my M.S does appear to be starting off aggressive, I still feel like I am making it all up. Part of me is still convinced none of it is real and they will do the scan and it will show nothing and everyone will doubt me and think it’s all in my head. I feel like I’ve suddenly been planted back in to limboland and a lot of what I am feeling is very similar to how I felt in the 6months following a diagnosis of Clinically Isolated Syndrome and waiting to be diagnosed with full M.S.

The discussion with the neurologist about Tysabri also meant the inevitable discussion about PML. That big grey blob looming on the horizon of hope that is Tysabri. I was given some information from the hospital about Tysabri, so instead of trying to explain PML in my own words, I shall refer to the leaflet.

“Progressive multifocal luekencephalopahty (PML) is a rare side effect of Tysabri. It is a rare brain infection caused by the JC virus. PML causes damage to the myelin sheath around the nerves in the central nervous system. It is an aggressive condition for which there is no treatment. PML is not always fatal, but can lead to death in as little as 6months.

The JC virus is commonly found in the general population and usually causes no symptoms or harm. However, if the immune system is weakened or changed with medication, the virus can lead to PML. We will take a blood test to find out if you have been exposed to the JC virus as this will indicate if you are at a lower or higher risk of developing PML.

If you have NOT been exposed to the JC virus, the risk is extremely low. There is only a theoretical risk of developing PML of 1 in 5000, based on the possibility of new infection in the future. About 2% of the general population are infected by the JC virus per year.

If you HAVE been exposed to the JC virus, the risk of developing PML is 1 in 2500 in the first 2 years of treatment. In the third year of treatment the risk increases to nearer 1 in 400. In the years after this, the risk may go down again but this will become clearer in the future”

I remember when I first got diagnosed and was reading up about Disease Modifying Drugs, I read about Tysabri and the PML risk and I remember thinking that I’d never want to take Tysabri. I never felt it would be worth that risk. I also remembering thinking “I never want to be in the position where I am offered Tysabri”. Now, I am in that position and my thinking has totally changed. I don’t see it as a choice at all, the risk of PML suddenly seems much smaller and all I can think about is getting on the drug and the possibility of actually going longer than 5months without relapsing. The thought that things could actually get better. That I could actually have more of a life, go for walks, and hold down a job. All of these are things that I can see losing all too soon if I don’t take Tysabri, and if I do, I have some hope for the future.

I have decided to stop the Copaxone straight away. The neurologist said he would rather I was on something but he could understand if I wanted to stop it as it doesn’t appear to be doing anything. I was finding it harder and harder to inject myself every day since this last relapse. It’s funny how your motivation can change so quickly. It’s like my total turn around on Tysabri. When I started the Copaxone I was so strict with it, setting my alarm to do it at the same time each day with not a jot of resentment, because the hope was, it was doing some good. Now that I feel like it is doing sweet f.a, the thought of doing it each morning is horrible. I am not usually squeamish with needles and have had no problems injecting for the first 10months or so, but as soon as I decided it wasn’t working, just the actual physical act of puncturing the skin with the needle was so hard to bring myself to do – and coming from an ex self-harmer, that is saying something! It was so nice this morning to get up, take only one tablet, have a coffee and not worry at all about finding a space amongst all the lumps to inject myself. I suddenly want everything Copaxone related gone, I want the syringes out my fridge and sharps bins out of sight.

My other reason for wanting to stop the Copaxone is what if it actually IS doing something? Okay I am still relapsing at the same rate as before I was on it, but what if I would’ve been relapsing even faster without it? As I’ve just had a relapse, I’m kind of breathing a sigh of relief and feeling a bit like I am in the clear for a few months. I know M.S doesn’t work like that, but it is too easy to see it that way. I think it is only natural for the mind to try and find an order and reason for something that is just so unreasonable and unpredictable.  M.S is, by nature, totally irrational but in order to cope with it, I find myself constantly trying to rationalise its behaviour and make sense of it all. Anyhow, I digress; my point was that if I stop the Copaxone now I will have a break without taking anything before [hopefully] starting the Tysabri. If I suddenly start relapsing at a quicker rate, it will suggest that perhaps the Copaxone WAS doing something. It then means I could hold Copaxone in higher esteem and it would be there as another option and hope if for any reason I can’t go on Tysabri or if I do and it doesn’t work. As much as Tysabri is a glimmer of hope it is also a shade of fear. It is pretty much the end of the line with DMDs as they currently stand. If it doesn’t work, what next? That is one of my biggest fears, probably bigger than the PML fear. I really don’t want to be in that position. So by stopping Copaxone now, one of two things can happen. I won’t relapse any quicker thus confirming Copaxone wasn’t working and Tysabri is the right decision and I will get a couple months off from taking it. Or, I will relapse again thus suggesting that Copaxone was doing something, and I’ll still be able to keep it as a possibility in reserve for the future, lessening the fear of if Tysabri doesn’t work. A win win situation right?!

So now, here I sit feeling rather like I’m on a similar track of where this roller coster ride began. Waiting for an MRI, waiting for the results, wondering if the scan will show anything or if it is all ‘me making a fuss’. As is all too common a feeling with M.S, waiting to see what will happen next.