Tuesday, July 22, 2014

Two Years on Tysabri

Last week I saw my neurologist as I had recently had my annual MRI.

I didn't feel compelled to collect a copy of the report before seeing him, as I usually would. I didn't need to prepare myself, as I feel great on Tysabri.

With my whole family in tow, we enter my neuro's office; we exchange pleasantries and sit down. He smiles and tells me everything is great. No new lesions, no activity. This was not unexpected news. It would have been unexpected for him to tell me there was inflammation and new lesions.

My question to him was, so how long have I been on Tysabri? Two years he says... That is two years with no activity, two years of it being like I don't have MS. Luckily for me I am JVC negative, so I don't need to think about changing medications, or the possible consequences of staying on Tysabri after two years. I suffer no side effects... I remember after the first infusion I was exhausted, but in hindsight this may have been the result of the worry and the what if's. I'd always told myself in the early years after Tysabri’s release that I would never consider Tysabri, due to the deaths of people on it. However after several years, new research on hand - a more complete evidence base and being JVC negative I took the plunge.

It's a bit strange trusting a medication... to trust it is working and working day in day out, with really no way to monitor it, except for the annual MRI and no new symptoms. All I have to do is show up once a month and offer up my hand. I don't do anything. It's all rather passive... Which is not really my style, but hey, there are worse ways to spend three hours!

Interestingly my neuro mentioned that there are, give or take, 250 people in Western Australia who show up once a month be infused with Tysabri. I hope it works for all of them as well as it does for me. (I wonder if they have trust issues?) Sometimes in the first months, people can develop anti-bodies to Tysabri and have to stop, which would be sad and frustrating. I would love to hear from anyone who developed anti-bodies, leave me a comment please.

At my neurologist’s initiation, the rest of my consultation was spent talking about The Lego Movie, and how it is not just good for kids. I didn't need to ask questions about alternative medications, the what if's regarding medication efficacy or new symptoms - so what else was there to discuss!

Hope you are well xx

No comments:

Post a Comment

Please leave a comment. I love to read them...