I don’t think I mentioned it here but I stopped taking my meds about six weeks or so ago. I guess I just got sick of pumping and dumping and worrying over whether, despite what the neos believed, medicine was getting through my milk to T. I was doing well healthwise despite the lack of sleep and decided to take a chance at stopping my meds – even though perhaps doing so right before going back to a stressful job wasn’t the best timing.
Anyway, I hadn’t gotten my labs done for a good five month and finally went in this past weekend, feeling a bit of dread in my stomach because I spent the last week completely exhausted (despite getting acceptable amounts of sleep) and joints that were starting to feel stiff.
The good news is that my kidney numbers appear to be holding steady. My blood protein and albumin levels are still safely in the “normal” range (low would mean my kidneys are leaking). My serum (blood) creatinine is also at the upper bound of normal (whereas even before I got pregnant and was considered “healthy” it was slightly above normal). My protein/creatinine (urine) ratio is definitely high compared to the general population and even high compared to my own “healthy” numbers but nowhere near as high as my “unhealthy” numbers. I’m normally somewhere around 0.5-1 (normal population I believe is under 0.2), my value this time was 1.4, but when I have been really sick it has gone up to 3+.
So all of that taken on its own would indicate things are pretty much status quo. Yes, some disease activity is still obviously present but nothing worryingly so.
Oh, I am also surprisingly not anemic, as in all my numbers fall squarely in the “normal” range. This is unusual since I’m usually low or low normal.
Even my C3 and C4 levels (markers of autoimmune activity) are low but similar to the levels they have been in the past while I’ve been in remission (i.e. not crazy low).
The only number that I’m really concerned about is my dSdna, which IS crazy high. Like higher than the highest number I was able to go back through my records and find. This is a marker for lupus disease activity and usually indicates a high probability of kidney involvement.
I feel like this isn’t my first rodeo and I can see the writing on the wall. Although I don’t know this for sure my gut is telling me that I am seeing the beginning of a flare, one that probably hasn’t had a chance to manifest itself in any real way yet but likely will do so soon. The length of time I’ve been off my meds makes this makes sense. The fatigue and the joint stiffness (but not all out pain – yet) make this make sense.
And while I’d love to be able to stay off my meds, I’m coming to the realization that with the information I now have, the risk is actually more of a reality now. I can’t take care of my baby if I’m confined to a bed, in pain, weak from anemia and swelling so badly that I can barely stand for five minutes. It’s just not going to work.
So I’m hoping it’s not too late to stave all this off and I’ve decided to go back on my meds. I will take them at night after our last nursing session and then I will pump and dump in the morning before work. I make a lot of milk at this time (8-10oz) simply because it’s been so many hours since I last pumped but the milk tends to be thin and have the least fat. I usually hesitate to give it to him anyway since I have sometimes taken sleeping pills at night to help me get to bed on time. I generally try to give him the milk I pump during the day which is fattier and only feed him the morning milk if we run out of breastmilk. There is so much stored up that using our freezer stash built up over the last 6 weeks wouldn’t be the worst thing in the world anyway. If I take my meds immediately after nursing at night and don’t give him any of the pumped milk until the 2nd of the day around 9am, it will be over 12hrs since I took my medicine and double the six hour buffer recommended by the doctors.
Weekends will be a little different. I will probably not take my meds at all on the weekends since I like to nurse him as much as possible and think that ultimately sleeping longer hours on the weekends will be better for my health than taking meds, waking up to pump and then feeding him. My doctors may not agree but I think I’ve lived with this long enough to be able to make these judgements.
So yup, back on meds as of tonight. Sigh. I just can’t get away from them.