I suppose the real question with all of the things I have told you, particularly all of the events that have been occurring in my life, is where am I now? Like you, my parents had these questions. We had a few very candid conversations about this and I hope they don’t mind if I share a few with you now.
The treatment for Rituximab was instigated as follows: a call from Immunology.
“We have a plan of a drug therapy. It will be an outpatient treatment, you won’t need to stay in hospital for it. It will be an IV therapy, there are very few side effects. It is not a common treatment but we feel it will work and is our best chance. You should only need to do one round of treatment. Because it is not a usual treatment we need authorisation to order it. If you want to go ahead, you need to give me your consent so I can apply for the approval to use it. Would you like more information? Do you want to discuss and consider it?”
“If it will work I’m happy to go ahead. What is it called?”
“Rituxan, or Rituximab.”
“Thank you, but if you feel this is the best treatment I think we should just go ahead and we can discuss it later. I give you my consent to apply for this therapy.”
Thats about it. I was told I would be contacted when I was booked.
I was contacted two weeks later with a one page document. Time, place, what to bring. The usual hospital appointment sheet except this time it was the basement. Chemotherapy. At this stage my nerves had frayed to Voltaire proportions.
Perhaps three weeks ago it was expressed a feeling of frustration over the lack of preparation regarding my Rituximab infusions. The complaint was that given the more serious nature of my new treatment was considered to have warranted, if only a brief, face-to-face discussion. Why wasn’t I offered this? Feelings of dissatisfaction were ripe, concerns of inappropriateness and displeasure at the removed approach to my very serious health concerns were expressed often and in great detail.
In short they were unhappy and wanted more information.
As a 27 year old woman I had to point out that, yes, we were left somewhat ‘in the dark’ here but also there is this:
I am an adult. I do give a lot of room for movement and involvement to my parents in regards to my health. I was offered a chance to be told more and I chose not to accept. I did not want to delay treatment by waiting for updates. It was cavalier, naive and rude but it was my choice. I could have taken a more mature approach but I just did not want to.
It was a hard discussion.
Over the month of August both of my parents were regulars in my household. As of the surgery on 28th August my mother became a resident of my house. My father was a regular visitor. Over the next two months they were ever present and took the time to attend to my recovery, aid in duties I needed to maintain as well as accompany me to appointments. As of last Friday, 23rd October, I became once again a woman that does not live with her parents. Yay, adulthood!
For two weeks in October I undertook my university degrees mandatory two-week in-school practical teaching placement.
Since the middle of August I have been on a 25mg daily dose of Prednisolone (a corticosteroid used as an immunosuppressant). This has created manic issues to an extent that has lead for me to be prescribed the antipsychotic Quetiapine. This was due to the doctor’s inability to cease my steroid treatment, given my current physical condition.
Now we get to the exciting part! I can tell you what we are doing about this!!
Monday 26th October my elder brother T-Dog and I went to NeuroImmunology.
Is Rituximab a one off? Presumably, we will monitor it 3 monthly for a year.
How will we know if it works? They will monitor my B-Cells and scan my brain, as well as all the typical blood tests.
When will we know if it is working? Within 3-6 weeks we should see some changes.
How long will it work? It will be working for 6-9 months in your body. Hopefully it will change how your body works concerning this disease.
Can I stop the steroids? Not yet. Ideally the Rituximab will mean you don’t need to go on any more high doses of steroids in the future. But we need to know its working.
Does this mean I won’t need the other immunosuppressants? Yes. You will be stopping the Azathioprine now.
Then it was their turn.
How is the Quetiapine? It is balancing my moods so I like that.
How is the psychiatrist going? Good, very helpful.
Are you doing things yourself to overcome the effects of the steroids and balance the depression? Yes, eating well, socializing often, exercising regularly and getting good sleep.
How are the migraines? More regular and stronger.
How are the other lesion symptoms? I have more visual auras, more disorientation and less control of balance and coordination. My head hurts often and feels unevenly weighted. Sometimes I feel like I have people behind me when I am alone, sometimes my left rear skull feels heavy. I wondered if this was due to the lesion freeing up?
Do you have these symptoms more in the build up to an episode? No, usually they are two or more weeks removed from an episode.
They decided I need more tests. I need bloods, urine and of course the ever popular MRIs. I will have these and return in a fortnight. If the tests are OK I may get to drop the steroids. In the meantime I can stop the immunosuppressant Azathioprine, which I have been on for 18 months for the vasculitis. As it is clearly not working, I will start a new one, which will replace it directly and start to work while the Rituximab is in my system. This new drug is Mycophenolate.
At this point I will leave you. I will return soon to discuss drugs.