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.

Lets talk body image ...

In 2020 one of the most common concerns of any young adult especially females is the way they look and the way others view them. One thing I have learnt over the past 3 years going through my medical journey is how important it is not to judge someone on their looks as you don’t know their story and what they are going through.

99% of the time most people would say I am a very positive person when it comes to my illness and everything I deal with. I have this way of just sweeping every hurdle under the rug and accepting the fact it is what it is but trust me if you are ever reading my blog and thinking to yourself – how does she not have bad days, or feel down … I do.

As we all know my battle with steroids and being on them for long periods of time along with the fact it is virtually impossible for me to reduce below 30mg without relapsing has taken a massive toll on my body and the way I look. As you probably read in my post about steroids I struggle constantly with my weight; in between going back to hospital in December to the end of January 2020 I put on nearly 10kg, but the worst side effect from them and what affects me the most is the stretch marks it has caused on my body. Even if you are lucky enough to not gain weight from steroids the longer you are on them your body stops to produce as much collagen which leads to low elasticity in the skin.

At the end of January, I decided I was going to really knuckle down and focus on getting fit again, forgot that I’m on steroids, try my best to lose some weight, tone up and get fit because let’s face it in exactly 9 months on Thursday I’m going to be a bride and we all want to look our best for our wedding day. I was off to a great start, eating well by tracking my macros, being conscious of what I was putting in my body and even went back to my boxing classes. The first week I went twice and managed to do my 10,000 steps every day, and last week I was able to step it up more by hitting my step count every day and attended 4 boxing circuits – I was feeling great and even better I had lost just over 3kg within the first week of February!

As the new week rolled around, I was excited to smash out another week of healthy eating, training and hopefully some more weight loss. I woke up Monday morning, packed all my food for the day and organised my gym clothes ready for when I finished work. By the end of the day I was feeling pretty tired but with that wedding body in mind I went home, got changed, went to the gym and smashed my workout. (side note – the weather on the Gold Coast currently has a mind of its own and the fact I train in a boxing gym that is a tin shed with no aircon, the humidity in there is literally through the roof so although I was a hot sweaty mess at the end of it, I was actually feeling really good and proud of myself for pushing myself to go and give it everything I had). I got home and was getting ready to get in the shower and that’s when it hit me and I literally just broke down – as I was getting undressed I happened to see my arms in the reflection and I hated what was staring back at me. When I first got the stretch marks on my legs I learnt to accept them and would tell myself that it’s okay because no one is going to see them and id tell myself the same thing when they started appearing on my hips but seeing them on my arms in a place that is clearly visible to the world really got to me. I sat on the floor in the shower and just cried because all I could think was no matter how healthy I eat and how hard I train at the gym until I stop taking steroids there is literally nothing I can do to stop them from growing, getting bigger or getting worse and that killed me a little inside.

I am lucky to have such a supportive husband to be who happened to see I was upset and literally just came and hugged me tight and talked me through it, reassuring me it’s all going to be okay and to look at the bigger picture – if it wasn’t for the steroids I would potentially be blind so we needed to be thankful that it is a medication that is easily available for me to access and use (in saying that if I was blind I wouldn’t see the stretch marks so that’s one bonus … lol only kidding).

Going through everything I have and seeing the way I have changed has really opened my eyes and taught me that when I see someone covered in marks, scars, is really big or looks so small they would snap in the wind; to take a step back and before I start to judge them, I now stop and think what they may be going through or have gone through and just think about how lucky I am to have my health and life; although my health isn’t perfect there is still always people worse off than me.

I have put photos below of my arms, legs and hips which was the hardest thing for me to share as it is my biggest insecurity but if there are other people out there experiencing the same thing I want you to know you are not alone. Although it is extremely hard because no matter what anyone says we all know the way we look is important (let face it who doesn’t want to look their best) we need to accept that our marks are a part of us and they make us who we are; they are a part of our story and our journey to finding the invisible fix…

The week that was ...

As the first month of the new year comes to an end I finished it off with a few fancy eye tests, a catch up with my neurologist and 10 vials of blood less.

On Tuesday morning I made my way up to Brisbane fresh faced, bright eyed and bushy tailed for a morning full of eye tests. Over the last few years since being diagnosed I have had countless MRI’s and ophthalmologist visits to track how my eyes are going but there is only so much they have been able to see. The ophthalmologist typically can only measure vision from the general eye tests/looking in behind my eyes and the although the MRI’s can show that there is inflammation on the optic nerve it can’t give the doctors much more information as to what is going on. My specialist had requested I go off to Queensland Electro-Diagnostic & Imaging Centre to have an Electroretinogram (ERG) and a Visual Evoked Potential (VEP). An ERG “measures the electrical responses of various cell types in the retinal” and a VEP “measures the functional integrity of the visual pathways from the retina to the visual cortex of the brain via the optic nerve.” The other great thing about these tests is it can give my neurologist an insight whether or not my condition is a demyelinating condition or not. Both tests were done by placing electrodes in my hair, around my eyes and also a fine thread electrode put in the bottom of each eye. It wasn’t painful at all, just left me with blurry eyes for a few hours as they dilate your pupils and your eyes can feel a little tired/strained as you are staring at moving objects, flashing lights and going between lights on and lights off for 3 and a half hours.

The next day I had an appointment with my specialist to go over my last hospital admission and talk about what’s next. He mentioned that in my last MRI I had just before I was discharged from hospital, there was clear inflammation on my optic nerves specifically at the back point where the nerve connects to my brain. He also mentioned that the second set of check-up tests I had done with ophthalmology showed no improvement in my vision but on the plus side it hasn’t decreased within the couple of weeks between the testing so that is always a bonus.

In other great news my application for my new drug infliximab got approved, so after having my normal monthly blood test plus the pre-screening for infectious diseases I am now all ready to start. Hopefully next week I will get a call with my appointment time and within the next few weeks I will be all locked and loaded ready to go. It’s going to start out as an infusion once every two weeks, then it goes to every four, six, then eight weeks. I still have to stay on all my daily medications (prednisone, mycophenolate, somac, resprim forte and vitamin D) but fingers crossed the longer I am on it, if it proves to be working I will get to start reducing my prednisone … HALLELUJAH !!!

For now we just wait for that phone call with my appointment time but I have a good feeling about this drug, this is going to be the one that works and I’ll be one step closer to succeeding my goal of a full year with no hospital admissions and getting off steroids!