So.. I started the Imuran and very quickly my body let us know that the drug was not going to work for me. I have a lower level of TMPT, which means I am at a intermediate risk for the Imuran causing bone marrow toxicity, which we found out about a few days after I started taking the meds. About the same time we found out about the TMPT levels, I all of a sudden at lots of bruises. I knew what they were all from, but it was all from bumps that should not have given me bruises. My rheumatologist had me stop taking the Imuran because the bruises, along with the extreme fatigue, were signed that my body couldn't handle it.
I went back in a few days later to discuss other treatment options. She gave me a few different options of chemo drugs for me to pick from, but her suggestion was to try methotrexate next. I had to wait for couple weeks for the Imuran to be completely out of my system and I had to wean Peyton from breastfeeding before I could start, so I had a bit to decide which option I wanted.
I started the weaning process with Peyton right away. It was a lot easier than I thought it was going to be. I really wasn't ready to be done nursing, and neither was he, but we have pushed through it and it's been a few days since he nursed! (For the record, I breastfed for a total of 64 months! And if you count the months twice that I was nursing two kiddos, it's 91 months! That's a lot of breastmilk!!!)
I decided to go with my doctor's suggestion of the methotrexate and took my first dose on Sunday night after Peyton nursed for the last time. I had an upset stomach on Monday for most of the day and Tuesday felt like I had gotten run over by a train until lunch time or so... so overall, the side effects haven't been too bad yet. Hopefully it stays that way. With methotrexate, you only take it once a week. From what I've read, lots of people have a day or two of feeling icky or off after taking it, but then are good the rest of the week.
Since I've last posted, I've also seen the cardiologist and the neurologist.
The cardiologist said that the calcium channel blocker I started taking the January appears to have helped resolved the arrhythmia and tachycardia I've been experiencing. So... for now, as long as I stay on that medicine, my heart seems to be good!
The neurologist upped my dose of the calcium channel blocker. While it has helped my heart and my everyday headaches, I'm still having more migraines and neuro issues than they would like. So far, I've been on the higher dose for a few weeks and I have noticed a difference in my neuropathy, tremors, and vision disturbances, and the migraines haven't been as horrible.. so I'm hopeful that as my body adjusts, I will see even more improvement. If not, we'll up my dose again and go from there. She also is pretty sure that once we get my lupus under control and my immune system leaves my CNS alone, that most of the neuro issues should go away and I should be able to stop taking some of the meds!
So.. for now, I'm hopeful that we have found a good treatment plan for the time being... and if it doesn't work, there are a whole lot more drugs to try.
I'm trusting in the fact that God's in control...even of my crazy out of control immune system!