December 6, 2008

New Info on How to Use Byetta for MODY!

UPDATE (April 2, 2013): Before you take Byetta, Victoza, Onglyza, or Januvia please read about the new research that shows that they, and probably all incretin drugs, cause severely abnormal cell growth in the pancreas and precancerous tumors. You'll find that information HERE.

Original Post:

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.

7 comments:

ItsTheWooo said...

In the meantime for your fridge have you considered buying ice bricks, like the kind used to transport medicine?

Leptin is a hormone, storage and use of which is similar to insulin. When I was taking supplemental leptin as part of a clinical research study I had observed that when I stored the new leptin with ice bricks, the effect of the leptin was much more potent throughout the month. My fridge also sucks.

Jenny said...

I have some of those ice bricks I've saved from shipments.

The Byetta pens are only doled out one a month so I won't worry about it now.

Since posting about this, this morning, several more parts just broke on our fridge, so it looks like we'll be getting a new one. It isn't worth fixing. We've already ordered quite a few parts and the replacements break too.

It's only 5.5 years old, but they seem to have made it out of plastic that isn't cold-tolerant. Parts just keep snapping for no reason at all. It was a Maytag. NEVER again.

Scott said...

I would think that greater customization of dosages would enhance the safety profile of the drug, and considering the company is now hoping for approval of an extended release version and ran into difficulty on safety grounds, they might want to improve it. The same is true with insulin; many people (especially children) with type 1 find 1/2 unit is needed, but can only buy pre-filled pens which dose in 1 unit increments. Alas, the companies don't seem to care, as they make more money at higher volumes.

nonegiven said...

Maytag used to be the best and the repairman really was lonely. This has changed in recent years and the products no longer seem to wear as well. I have a washer at least 20 years old that still works great.

Jenny said...

Some other company bought Maytag. They just took the name not the quality reputation.

Scott,

I agree that it is a shame that it isn't easier to find half unit dosing in the disposable pens. There is a Novopen Jr that has it--someone kindly gave me one. But it only works with Novolog cartridges.

Anna said...

I've sworn off Maytag forever.

Trinkwasser said...

Since posting about this, this morning, several more parts just broke on our fridge, so it looks like we'll be getting a new one. It isn't worth fixing. We've already ordered quite a few parts and the replacements break too.

It's only 5.5 years old, but they seem to have made it out of plastic that isn't cold-tolerant. Parts just keep snapping for no reason at all. It was a Maytag. NEVER again.

Lucky it's Christmas eh?

My ex bought one that was on sale but it never kept anything cold, it spent most of its time defrosting itself.

I even have a garden hose that doesn't work properly, drug companies are far from alone in marketing crap.