Could this be the answer ...?

As most of you know by now the search for the best concoction of drugs has been going on for nearly 3 years and up until this point we haven’t had much success. I also started 2020 with the goal of finding more answers to this invisible illness and was also determined to not get admitted to hospital for the whole first year of the new decade (and hopefully many more years to come). 

In January we decided to start a new drug called Infliximab to try and suppress yet another part of my immune system in the hope that I will stop relapsing and all I can say is we are now two doses in and without jinxing it I think this one might actually work!

Infliximab is an IV infusion that runs at 0 weeks, 2 weeks, 4 weeks then every 6 weeks and works by “blocking the effects of tumor necrosis factor alpha (TNF alpha) a substance made by cells of the body which has an important role in promoting inflammation.” Due to reaction control the first four doses have to be run over long protocol and then you have to stay back and be monitored for an hour before you can go home but moving on after that if they all go smoothly they should be able to run it over an hour so will be in and out within 2-2.5 hrs in total. 

Besides me being me and making it difficult to cannulate (3 attempts on both days) I otherwise handled the infusion really well. Due to my history with reacting to medications I get given corticosteroids before the infusion starts. Infliximab is relatively good when it comes to side effects too, the only thing I noticed is the day of the infusion I am pretty wrecked and will sleep most of the afternoon and the next day you do still feel run down but besides that I haven’t had any other dramas.

I now wait one month and will be going back on the 26^th for my third round and then see my specialist on the 1^st of April to discuss how it is going and what the next steps are. After needing to use strong pain medication like endone for nearly 4 months straight I have now managed to go the last two weeks with only needing to have it twice. I have barely any pain on movement in my eyes and the headaches are definitely reducing so everything is looking positive.

Without getting my hopes up; if I can stay off the strong pain relief and keep getting the infusions with no reactions I am hoping I will finally be able to start reducing off my steroids. This month marks my one-year anniversary of being on doses between 30-60mg with no reductions so I think everyone knows just how excited I will be to finally get off them!

Although some times it feels like a never ending battle and that we will never find an answer this is why we need to remember, it is what it is and everything happens for a reason. Yes I have tried multiple other drugs over the past 3 years and had no success and yes I had times that I felt we would never find anything that was going to work but this is exactly why you have to have 100% trust that your specialist knows best and they will find something that works for you. If you ever don’t feel comfortable with your treatment plan or feel like things aren’t working you need to speak up – that’s one thing i've always done (surprise, surprise for the people that know me personally – not something I find hard to do lol) but its true, you are in control of your outcome and you control your destiny.

Obviously things aren’t perfect, I know this isn’t a cure and daily medication is part of my normal life now; but if we have found something that’s going to keep the pain away, stop me from losing more vision and keep more out of hospital I certainly wont be complaining …

Until the next update stay positive, keep fighting and don’t hesitate to reach out – I love hearing about your journeys too.