Your Dose - How did you determine?

I’m curious how you figured out the correct dose?

I can only take a small amount of Symlin, otherwise it spikes me.

What’s your experience?

My doctor had me start on 120. I found out later that most start at 60 until their body gets used to it, especially the nausea! But I was at 270 pounds and had put on 20 pounds in a few months when he put me on Symlin. I guess we were going all or nothing. I did find out by speaking the the nice folks at Symlin that you should take the Symlin before the meal and your normal injection after the meal so you don’t plummet your sugars. That works much better for me. When I took them at the same time I would be lower after eating then before.

T1 or T2? For a T1, you should start ~15 and work up to 60, for T2 start ~60 and work up to 120.
But, I haven’t done that. I (T1) started at 15 and worked my way through nausea up to 45. I stopped at 45 because that seems to be working, so why take more?
When you say spikes you - do mean your BG crash shortly after taking it? How/when are you taking it and how/when are you taking your insulin with it? Every MD instruction I’ve ever heard is just wrong! On the other hand, if Symlin is doing that, then its working, so you may not need to go higher. But, workout when and how to take it and insulin.
For me:
BG <100, take symlin AFTER you’ve eaten 1/2 your meal, take insulin (humalog or novalog) after you’ve finished the meal using a 1.5 hr squarewave bolus (assuming you have an MM pump, regardless, you bolus should no longer be a bolus, it should be a 1-2 hr infusion).
BG100-120, take symlin and start 1.5 hr squarewave bolus right before eating - and I mean right before, I don’t take symlin until I have a fork full of food halfway to my mouth.
BG>120. Initiate squarewave bolus ~10 min before eating. Take Symlin immediately before that fork goes in the mouth.

BTW - prior to takign symlin I had to take my insulin 30 before eating.

Hi TS -
The only reason I take Symlin at all is because I am so extremely insulin resistant. I take it to help reduce the amount of insulin overall, which keeps my weight down.

T1 or T2 - well, I was a T2 for nearly 20 years - very genetic - 3 siblings are as well. And no, we’re not overweight (at least I wasn’t before starting insulin) - and I’m convinced it’s autoimmune related because we also have Hashimoto’s prevalent in the family. In any event, after 20 years of taking those horrible oral sulfonylureas and listening to GP docs who really knew too little - and NOT educating myself - my pancreas finally gave out - very few beta cells. So, by insurance standards, I am T1, but in reality, I am an insulin-dependent T2.

I have been taking it right before eating, and then combo bolusing about 45 minutes later (usually 1.5 hr spread / 70%-30%, depending on what I’m eating). However, for some meals, what happens is that 2 to 3 hours later, I’m spiking way higher than I would have if I just bolused regularly without the Symlin. And when I bolus right after eating, it didn’t seem to make a difference - it was like bolusing water.

And the problem gets worse the higher the dose of Symlin - I’ve had readings way higher than I ever did without it. It’s frustrating because this is the second time I’ve tried Symlin and both times, it worked great initially, and then got worse - esp. as I tried to up the dose.

But I have not tried the ideas you put forth - taking in to consideration my BG at the time. Also, I’m wondering if I just don’t eat enough carbs for Symlin. I only do about 30 in the meals for which I take Symlin. According to Jason, Symlin works for high protein meals too (about 40-50% becomes glucose), but maybe not for me?

It’s not just the doc’s who are totally wrong - the Symlin folks need to do a better job with their directions, too. I think I need to talk to them.

Thanks,
Cheri

30 g of carbs is a lot for me. I’ve started eating more fruit to get enough carbs to take symlin. I’m wondering if you aren’t taking your insulin soon enough? It’s hard to tell. I got on the web and looked up the pharmacokinetics of symlin and humalog (which I was on at the time). [BTW - I’m a pharmacokineticist - the profile of insulin/symlin in the blood is at the crux of this whole issue and extremely important]. Symlin peaks in ~20 min still has effects up to 3 hr later. Humolog peaks later and stays longer and has a different elimination half-life. I plotted the two out, and estimated gastric emptying, to come up with the 1.5 hr infusion for humalog for myself. Then I read Jason’s blog and was thrilled that I had a basis for trying it.
So, you should take your shot so that it starts to peak in about 1 hr and peaks in about 2 hr (when you are high now).
This is very difficult without a pump, not sure how anyone can do it!
As to the doc - the “take before you eat and cut your insulin in half” is mesmerizing - the insulin needs to be “in half” right away, then still needed later. Symlin just slows down gastric emptying, it does block the liver from scrubbing extra insulin, so you should need less, but how much really depends on taking it later.
Oh, that’s another thing - I am taking marginally less insulin than I was before, just later. (I used to be 1/8g carb, now I’m 1/7 - not a meaningful difference). I spiked high terribly with the “take half” advice.

Hi TS -

So - it makes you wonder about this Symlin, doesn’t it? I mean, yeah, a working pancreas also generates amylin - but maybe this synthetic stuff isn’t quite the mark - or maybe we don’t yet understand the dosage needed. And if it doesn’t really reduce insulin needs that much, what’s the point for people like you and me - who don’t eat a lot of high carb foods? What benefit is Symlin if it leads to higher BG than I had before?

Yeah, 30 g was high for me, too - I’d been living the Bernstein way pretty much. But I just got on the pump a month ago and figured I’d give Symlin another try. However, I think my new, more rigorous exercise routine (now that I can actually turn down my basal) is doing more to combat my insulin resistance than Symlin. Sooooooooo…think I’ll go back to my low carb ways and leave Symlin until they figure it out. The company has spent so much time making $$ on Byetta that I think they’ve sort of neglected Symlin.

Symlin is a keeper for me! I was a normal kid, not fat, definitely not thin. I was diagnosed at 12. I immediately started gaining weight, by the time I was 13 I was wearing an adult size 14 pant. I was a size 18 by the time I graduated highschool. By Grad school I was eating <1000 calories a day and exercising hours every day and down to a 14. I still do that and I still gain weight. The last 2 years I was becoming insulin resistant, or something - I gained 50 lbs in 18 months and my basal went up 2x - so I was taking over 75 u/day. I didn’t need more /meal, but more basal.
I started Symlin - lost 11 lbs in 1 month without doing anything different vis a vis diet/exercise.
That weight loss stopped (I was very sad!). But, the hope that symlin gave me continues. I’ve dropped my insulin basal back down to where it was 2 years ago and eating 750 cal/day and I’ve added jogging (more of a lumbering shuffle than a jog) to my bike riding and weight lifting - and I’m continuing to slowly lose weight (~8 lbs/month since the pure symlin effect wore off). So, my insulin/carb needs haven’t really changed, but so much else has! (I’m now taking ~45 u/day). I did have to back off my calories/day, but not too much.
I feel odd all the time now, almost a little nauseous, even 12+ hr after a symlin dose, but I psychologically feel better than I have in awhile as well.
they say for weight loss to take the highest symlin dose you can tolerate. I haven’t even had to do that - but I’m ready to up it to 60 if I need to.

Hi there - I’m so happy it’s working for you and that it has helped you.

I think I’m finally figuring out why it’s not working for me - it’s my stress hormones!!! Because it lowers my BG so much, my stress hormones take over and ensure that I bounce back. I’m realizing that I have very efficient stress hormones that help protect me from lows.

So, I’m thinking that maybe if I could get the vial (are they still making that?) versus the pen, I could take any less than the 15 mcg.

Cheri,
I just posted a blog post, this is what I went through to figure out my symlin/insulin dosing. I’m hoping it’ll help you (I like graphs).