On Christmas Day I was having a chat with my cousin who is also on immunosuppressants for a different reason – excema. As she has moved onto a different type, we began to discuss our experiences of aziathioprine. This led us to the ultimate question – has it treated the MG successfully?
Yeah I think so. I’ve been on a very low dose (2mgs) of steroids for months now and take little mestinon so it is my main form of treatment. I do have fatigue days occasionally and readers will know that my eye ptosis (droopiness) fluctuates, but my MG feels stable and relatively predictable.
Influence of the thymectomy?
I do wonder how much the stability has to do with the thymectomy – I guess there is rarely one answer for conditions like this stabilising. Medical staff say it can take years for the full affect of the thymectomy to be realised and things have definitely been more stable after my recovery.
As I’ve written about previously, I’m keen to lower the dose of aziathioprine to see how my body reacts. I think this will be when I really feel how much the drug has helped make the condition manageable. I wonder if the reduction will impact me gradually as it takes a long time to kick in.
No response to aziathioprine
One of the research projects Myaware is currently funding is looking at early signifiers of people who don’t respond to aziathioprine. As the drug can take a long time to make an impact, if any standard early signifiers can be found it will be helpful as clinicians will know to try another form of treatment.