Since I did so extremely well on Januvia, but had to stop taking it because of its ability to promote Melanoma by inhibiting an enzyme used to fight metatastic cells, I had hoped I could switch to Byetta. The kind of MODY I have is one that responds extremely well to beta cell stimulation by sulfs, to the point where a sulf is overwhelming even at tiny doses.
Unfortunately, when I tried Byetta two years ago, it was also overwhelming--causing me to hypo and go into a strange and unnerving mental state. The dose on the pen is set so I couldn't cut it back. I figure that since the main market for Byetta is very large, very insulin resistant Type 2s, the "small" dose was probably similar to the the Type 2 "starter dose" of insulin that is large enough to nearly kill insulin-sensitive me.
But recently I heard from a correspondent with MODY-3 who was using Byetta successfully. The starter pen dose was effective for her, but also pretty overwhelming. Her doctor (who is someone quite well known in the endocrinology community) told her how to cut the dose down on Byetta and she passed that information on to me.
It turns out, the standard 5 mc dose of Byetta is 2 units in an insulin syringe. If you draw the Byetta out with a syringe you can use partial doses. 1 unit is 1/2 a dose.
My friend was doing very well with the 1 unit dose, so I asked my doc for a prescription to try this technique. She gave me a sample, and I used 1/2 of a unit yesterday before breakfast and dinner and got very good results. Not quite normal, but competitive with what I have been seeing with insulin lately, minus the ugly peaks.
Using a syringe to remove Byetta from the vial is something the company tells you not to do. It may contaminate the Byetta. So I am putting a pen needle on the pen, shooting the Byetta into an open syringe and then carefully pushing out 1 unit before injecting it, rather than drawing the Byetta directly out of the syringe and getting all that air in it. Byetta is VERY fragile and very expensive.
The reason I wanted to try this is that for this whole past month I have been having a tough time with my insulin and seeing a lot of high numbers. I think my insulin may have been damaged by a known problem I've been having with my fridge, but whatever the problem, my insurance makes my current insulin regimen very expensive and there is no way to replace the insulin until next month. Oddly, despite its obscene cost, my insurance will only charge me $30 for Byetta. So if it works, this will be good news for me.
The other reason I wanted to try Byetta is that since switching from R to analogs, I have been battling slow but steady weight gain. Not a lot, but at my age, a pound you gain is a pound you will carry around until you get a wasting disease. So even three pounds a year--especially if it is three pounds on the tummy--is not good news. Byetta definitely took away my appetite, though at the low dose I tried I did not experience nausea.
Byetta also has the benefit of causing C-peptide secretion which may protect nerves.
I'll be reporting periodically on how this latest experiment goes.
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