My most recent appointment to the Neuroimmunology team at Royal Perth Hospital over a month ago was positive. I was told the Rituximab infusion was still working, so my B-cells, which fight foreign invaders, was low. I was told my eyesight was not impaired by either the Cerebral Vasculitis or the Hydroxychloroquine (Plaquenil) used to treat my Systemic Lupus Erythematosus (SLE or Lupus). Lastly I was told I was allowed to drive once more and could begin to reduce some of my medications.
So what have I been doing since then?
I drive to work now. It is 5 kilometers from my home so I feel comfortable with this. It helps as the days get shorter and colder. I work twice a week in the evenings at a private tutor center as an education assistant and teacher support. I work from after school finishes until 6 or 7 pm so driving definitely helps. My age range of students is between 4 and 14 years of age, coinciding with my degrees. The company is unbelievably supportive and so positive, they are like a second family. Last year when I was unwell I received such incredible support from them that I didn’t build any extra stress about the impact of my illness on my ability to work.
I still feel there are residual issues with my sight but it is sporadic and vague so I am not so bothered. I know the main concern is permanent damage or increasing injury and I am wise enough to not be actively wishing I were scarred or partially blind. I am healthy now, and while I do always mention what I notice the tests show it is not dangerous or a concern. That is the important part.
My goal this year is to titrate my medications, going down to either come off them completely or to survive on lower doses where needed. Some medications are not needed long term and so I have identified a logical progression and am going to filter through very slowly one at a time. The first is Prednisolone, which is a steroid used for suppressing the immune system. As mentioned above, I also have Rituximab in my system to reduce my B-cells, another form or immune suppression. You may be wondering if I have any immunity left, and how I fight off infection.
Well you may ask, my body, as an active autoimmune body, creates an excessive amount of B-cells, antihistamines and immune responses, to a fault. My body is flooded more often than not with these excess cells, causing swelling (inflammation) in the vessels, fluids, joints, organs and cells throughout my body. Traffic jams and angry drivers everywhere. The immune suppressants give my body public holidays, free public transport and carpool lanes to ease up the burden of traffic (if we continue with my analogy). In short there is less excess and more ease for cells to move, because the drugs have killed the cause.
It says a lot about how active my body’s immune system is, that I need three (count that three) strong immune suppressing drugs to have some semblance of a healthy body.
I can’t live on these forever. I need to teach my body to do it itself. I need to tiptoe away from the drugs in such a sneaky way my body doesn’t know what is happening.
I’ve been 1 mg down on Prednisolone for a month (to 6). Now I go to 5 mg. It is hard if you haven’t been on this drug to appreciate what a difference this drop does. I’ve been unwell the whole time. Moods flip-flopping. Migraines, inflammation at night. Lethargy all day. Pain. Pain. Pain. On 50mg of Prednisolone I could probably train and enter an Ironman competition. Without it I cannot get out of bed some days. But I will be living my life.
It will take 15 more weeks to come off it.
It is going to be hard.
It is going to be worth it.