Six months in, I thought I’d give an update on how the pyridostigmine is going.
Taking an Increase
Hoping pyridostigmine would help me be out of bed more, Dr. Levine asked me to start it at 30 mg in the morning, and that’s where I was in the last post. When that went well, she suggested I try adding a second dose in the afternoon, starting at 15 mg and then increasing to 30 mg. I did so.
The increase coincided with my getting a dental splint to wear at night for bruxism, and at first I thought maybe wearing the splint was making my sleep less deep and that was why my arms were feeling increasingly weak in the afternoon and evening. I customarily write postcards to a bunch of junior pen pals, and I found that I couldn’t even pick up the pen to begin.
After a couple weeks, becoming skeptical of my splint hypothesis, I looked back and realized that the weakness coincided with the pyridostigmine increase. It was supposed to make my muscles feel stronger; could it be doing the opposite? I wandered the internet a bit, searching for experiences of others, and learned that too much of it could indeed do so. Could I be taking too much, even though people who take it for myasthenia gravis take ten times the amount?
I’ve had enough drug reactions over the years that were the opposite of what was supposed to happen that it wasn’t difficult to accept that might be going on. I tried dropping the afternoon dose all at once, and that fouled up my sleep. I reinstated it and tapered it over a week or so, and my sleep held.
Indeed, my arms felt better at 30 mg. I also found that more water made a difference in how well I felt at 30 mg as well; if I didn’t get enough in one day, the next day my energy would drain away more perceptibly in the afternoon and evening. It’s a bit of a pain to work on hydration more every day – lifting that vessel more times is not an insignificant task – but it does seem to be helping me feel better.
Since the COVID vaccination a year ago, I’ve been struggling with sleeping to the very end of the night; I get up around dawn to have breakfast, and getting some food in me gets me back to sleep. I originally was taking the pyridostigmine after I was awake for the day, but I’ve shifted it to the tail end of the night most nights – 7 or 8 a.m. – and am finding that taking it when I wake up after breakfast helps solidify that last important bit of sleep.
Where I Am Compared to April
The drug seemed to give me a remarkable boost at first in terms of how physically active I was able to be – typing a lot more, walking out into the yard, being able to manage an appointment every week.
I don’t feel quite that boosted now. It’s possible it gave me a boost and then for some reason it became less effective. It certainly wouldn’t be the first time that’d happened in ME.
I wonder, though, if part of what I was feeling in that boost was just the optimism of feeling any boost at all. It’s profoundly affecting in severe ME, the hopeful sensation that something is helping. I don’t think that was all of it, but it could definitely be in play.
Chimp has been helping me bathe since I’ve been bedridden. With the boost the pyridostigmine gave me, I undertook handling my own bathing for a while when I was on 30 mg, but after I took the increase, with my arms weaker, I found that I could no longer do that. Dropping back down to 30 mg, after a while I found I could do it, but it was a significant energy outlay – more than it had felt like at first. For the time being, we’ve gone back to Chimp helping me.
As the summer has worn on, I have been able to do a garden check many days. I take my basket and harvest or prune for a few minutes. That’s been very welcome. Once frost comes, I’m hoping to to be able to turn those few minutes upright to some activity inside the house.
Even not going every week, I’ve been able to work my way through a great many needed appointments, slotting them in one per week on the weeks I don’t have therapy, with a week off every few so I don’t get too run down. This is so slow – it’d be faster if I wasn’t doing therapy, but I’m so happy with the work I’ve been doing there, work it’s taken thirty years to be ready to do, and I don’t want to hold up the momentum.
The trickiest change since I’ve been on it has been watching out for post-exertional malaise. For many years, I tracked my vitals and had solid benchmarks on what indicates PEM. The safe zone for me has historically been an evening heart rate of 58-59, an evening blood pressure no higher than 100s over 70s, a morning heart rate no higher than 80 and a morning systolic pressure under 90. If I crossed any of those thresholds I knew I was in PEM.
I don’t quite have a handle on what numbers I should be worried about. The pyridostigmine has pushed my blood pressure up into the 120s over 70s sometimes, territory that historically would have been serious payback, so I can’t use that as a benchmark, and my morning and evening pulse don’t seem to be as closely linked to trouble either. Pyridostigmine can improve heart rate variability, and I think that may be happening here; ME had made my heart rate variability very brittle, and I think maybe that variability improving is why the connection between my vitals and PEM is less strong.
Having watched the linkages, the benchmark that seems to be the current best indication of how I’m doing is my heart rate when I take the second round of sleep drugs, which happens sometime between 5 a.m. and 6:30 a.m. Pyridostigmine has a short half-life, and at that hour there’s effectively none left in my system. A heart rate of 68 before the second round is good; I know if it’s edging up into the middle 70s that I’m probably PEMy.
Because my vitals are less strongly linked, I’ve had to work harder to attune myself to what I’ve been doing, how I’m feeling, and being proactive based on how past PEM has manifested. I’ve had ME long enough to know that if I feel Really Pretty Good! the day after I do something, that is inevitably adrenaline talking and a bad idea to listen to. I know what activities are likely to cause PEM, and I’ve been presuming it’s going to happen and planning for at least three days afterward to stabilize and a week to recover. So I’m doing things more by the book and less by the numbers than I used to.
I think the med has given me a boost; my baseline does seem higher, even if it’s not quite as high as I thought it was at first. It hasn’t gotten me substantially more out of bed, as Dr. Levine had hoped, but I wouldn’t want to give up what it has given me. There are enough gradations of activity level in ME that I know how to appreciate even small improvements…most of the time.