Yesterday I picked up my Symilin pens and started using it.
Here are a few facts, since I can only minimally report actual results... I'm still on the ramp-up dose.
I received 4 pens that are usable for up to a month each. Depending on the dosage, this set will last me for 2-4 months. They cost $1159, and my co-pay after insurance was $50. So, it looks like it will cost me about $10/month, and my insurance is paying... A LOT. I don't know what my final dosage will be, I'm guessing I'll go through about a pen a month. This comes out to $279/month. When you add to that my pump supplies and sensors, it's a very expensive monthly routine. Shockingly so... If I didn't have insurance, I wouldn't entertain this experiment at all. So, out of respect for that expenditure, I'm planning to follow through with the trial to see what it has for me.
I guess the million dollar question is whether it will create significant improvements to my blood sugar control, and quality of life.
I will predict some pros and cons to using it.
- Stopping after meal rises from glucagon
- Slowing down how meals hit my system so that corrections can be more effective
- Using less insulin
- Getting something closer to a normal metabolism
- Taking injections and carrying a pen around again
- Running higher blood sugars because I have a new variable that makes me nervous about hypos
- Another variable
- One more level of translation: translating protein into equivalent carbs, cutting it roughly in 1/2, assigning an extended bolus, for a meal which is slowed down by Symilin (kind of complicated, lots of places to miss something).
Since yesterday I have used Symilin three times at the lowest dose, 15 micrograms. I understand it is equivalent to about 2.5 units (although I've also seen it converted into 1.5 units). Because I'm using it directly from a pen with set dosages, it really doesn't matter, it's just a clearly different measurement system. For some diabetics the higher number sounds kind of alarming because it sounds like you are injecting a large amount of material, but you aren't. If I get to the maximum dose for my pen (60 mcg) I'll only be taking 10 units.
Each time, I did notice a sense of satiety post meal, which stayed with me for a long time. I gave my insulin bolus at 50% and spread it across 2 hours. During that time, there was no rise, but later on I did see a subtle rise in the 3-4 hour window. I may need to give the bolus over a broader window of time.
Caveat: It's hard to be absolutely sure what's doing what, because I'm out of my insulin mimetic, Alpha Lipoic Acid Sustained Release, so I'm off my normal routine. I have upped my basal by 30% to compensate for it, but the results are a little squirrelly. It's hard for me to tell if my overnight rise is a really delayed meal rise or just my basal being insufficient. When my next shipment of ALA comes in I'll be able to do these tests on a more comfortable playing field. The thought just crossed my mind, that perhaps it would make sense to phase out my use of ALA. The expense of the supplement is about $1/day.
Conclusions from my 3 small doses of Symilin:
- It seems to hold off digestion for a while.
- It did not cause nausea for me.
- I didn't see the typical glucagon rise that I usually get after a protein/fat meal.
- I was gun-shy on meal boluses (3 units for the day), but made up for it in corrections (4 corrections totaling 6 units). My bolus insulin for the day ended up about the same as usual.