The call came on December 22 2015, telling me there was no inflammation activity in my brain. The translation of this was the Rituximab infusions had worked. There was no longer any indication the vasculitis brain lesions were present. Rituximab is the pharmacological drug, with a brand name of Rituxan. Rituximab is a specialty fluid that is injected intravenously. It attaches itself to B Cells, which are a type of white blood cells, or lymphocyte, in the blood of an individual. B Cells are valuable as they are the cell related to the immune system. They are the cells that attack and destroy invading viral cells and other harmful foreign entities in the blood stream. Rituximab attaches itself to B Cells and takes them to the kidneys for excretion from the body.
I am not a doctor or any kind of biological expert, so these facts are my interpretation of the documentation I have read and the information verbally passed on to me by my doctors.
You need B Cells
They are crucial to your immune system. The reasons for wanting to take them away are always and only ever severe, like if the immune system is misbehaving. A medical practitioner must be a specialist in a certain field and be able to prove extenuating circumstances to administer this drug, and even then they must apply to boards and committees with documentation proving its necessity.
I had misbehaving immune system
B Cells were blocking up the blood vessels in my brain. I had been having tests and ranged through many drug stages for over four years and nothing had worked. The growths, or lesions as they are called, were once more present. This time the lesions there were big ones. And they were scarring.
To be told you are brave and strong for living with lesions or this type of illness is unfair. You feel like you are being told you are an amazing person for having wisdom teeth. They were there. You hadn’t really noticed them, well not most of the time. You didn’t choose to have them and they weren’t really getting in the way. All. That. Much. It is not like your heart stops beating and your lungs reject air because someone tells you something that sucks.
If I could have laid down, closed my eyes and not have dealt with it any more I don’t think I would have minded.
When I collapsed in May I was scared. I have never been scared about this before. I was dating a guy. It was new. We had had a conversation earlier in the week. I know that. I have not had the heart to ask about it since. All I know is that I cannot remember it. Or him entirely. Even now. When I woke up I that hospital bed the next morning I didn’t know who I was. And when he messaged I didn’t know him either. It hasn’t been the same since and it likely never will. I think we both know it. But he is a good friend now and that is nice.
Second chance at my all time biggest challenge for the #bucketlist. The #perfect #keylimepie? This #recipe was easier to make than the last one. The #pie was less #sour than the last attempt, #creamier and not as heavy. I'm pleased with it, although my housemate Bow preferred the more soiree version. #achievingdreams #achievementunlocked #keylime #baking #homemade #dreaming #happyfitbeautiful #happybirthday #willowmade #willowlife #thislupuslife
Since May I have been split into two minds.
There is the slow moving, normal person who has migrated to Pre-Collapse Jessie. This girl has begun to seriously consider having a future, which is not something I have previously allowed myself to do. I have thought seriously about a real relationship, about what to do after I graduate, just the general making plans and budgeting. The other mind is going crazy trying to accomplish all the things I have always wanted to do. I’ve been learning German for two years now but I began to look into dance lessons. My epic cake making has taken me into the comfort zone of experimenting with cheesecakes, Swiss rolls, Key lime pies and I’m on my way to a Croquembouche (!) For my birthday I pleaded for a swim with sharks and managed to reach, not the cage swim in Adelaide, but the tank swim at AQWA (Aquarium or Western Australia). I am also in the early stages of planning my walk along the Bibbulmun Track.
Things were looking as though they were coming to a refined and satisfying equilibrium.
That is until Monday 12 September 2016. A somewhat routine doctor’s appointment at my specialists in Royal Perth Hospital Neuroimmunology Clinic revealed more lesions had developed. This is since the MRI brain scan in May. The Rituximab was no longer working as well as it should, my body was not behaving as they would have liked and thus the lesions had returned. To keep both myself and everyone else safe I was once again reminded not to drive, swim with sharks and please start taking these oral medications. The blow was only soften by the politeness of Connor, doctor delivering the news.
It was calmly explained the lesions were back.
Rituximab was expected to last in the body for 6-12 months and so it is not unusual to see B Cells at this stage. However during the lifespan of Rituximab it is expected that the body will acquaint itself with the way it works and thus begin to replicate the behaviour to prevent new lesions growing. My body was supposed to keep doing the work of Rituximab long after the drug had gone away and it was not.
There are avenues to take.
There is no need to jump straight back into another round of treatment. My body usually responds well to the steroid treatment of oral Prednisolone and so for a period of one month I will return to a large dose of 50mg daily of Prednisolone. As well as this, the immunosuppressant I have been taking, Cellcept (Mycophenolate Mofetil), in a small dose (500mg twice daily) will be increased to 1500 mg a day and then 2000 mg a day. The side effects of this second one are low and expected to be okay long term. Repeated use of Rituximab, or ongoing Prednisolone are not desirable, in fact they are highly undesirable).
How do I feel about all of this?
How do you feel about having brown hair and needing to go to the hairdresser every six weeks for highlights? Or the chemist for hay fever pills? That is just how it is.
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