As some of you know I have not made any major changes in my medication for 13 years and part of that decision was that the medication I was taking was working, so why change? The other part is that typically medications only have a certain shelf life in which our bodies respond and then the medication just stops working as our bodies adapt so I was fortunate enough that they continued to work. However, all the medication I take is for my symptoms not actually changing my disease. My Rheumy of 13 years retired and I was worried about what this meant for me, my team, and the management of my disease. My team consists of me, my family, my doctor, and my trainer. Together we all have a part to play in the management of MCTD and living with it.
I met my new Rheumy this week and I was pleasantly surprised. My worry was gone the moment he came in and sat down. He was honest, authentic, and saw me with fresh eyes. He gave me a lot to think about as far as my future and what living with MCTD means. Many of us do not stay in the MCTD category and I too am shifting to Lupus with recent blood work that was done. This doesn’t change how I live my life but it changes how I manage my disease. He said to me that perhaps we should try a new drug that would make me feel like less of a patient and perhaps change the course of my disease. I was all ears and took as much information with me I could before I left his office with a new prescription in hand. It didn’t mean I had to fill that prescription, and there was a lot more research I needed to do on my own before that decision could be made.
I filled my husband in and the research began, it is complicated when figuring our sources of information and keeping distance between what I read on line and personal experiences using medications. Not everyone tolerates medications the same and there are some real horror shows with any medication. I’m purposely not going to state the medication in this blog post as I want to give it some time and do some personal research before sharing the name but I will give a frequent update of the findings. So with that said we determined I would start taking this drug. This means that I take this drug and change the course of the disease in hopes of getting off my other medication that treats my symptoms.
I dropped my prescription off and waited to pick it up. I had a consult with the pharmacist since it was my first time taking it and he gave me all the appropriate paper work. I went home and sat down to read. Have you ever noticed how frightening the side effects and warning page can be on the paper work? This was no exception but what I drew from it was this.. I am feel nausea, dizzy, drowsiness, and fatigue. I can live with all that.
Day 1 I am standing at my kitchen counter, it is 4am and I must take this on a empty stomach. I take that first pill and think to myself my life could change right here in this moment with this little pill. I am still taking my other medication while I build this new medication up in my system and after a couple of weeks I can start to play with decreasing medication. I asked the doctor if I could start with prednisone and he said yes please do. This may mean that in a few weeks I can start to back off my prednisone something I haven’t been able to do in 13 years. I had no ill side effects with my first dose and today took my second dose. Again, no ill side effects and I still went to spinning and weight training this morning. I did feel more fatigue yesterday afternoon but is that life and work or is that the new medication? I’ll write my findings as often as I can but for now I feel as though my future is bright and my Lupus/MCTD is on its way out.