I give up on symlin

All in all - I’ve decided Symlin is NOT worth it - the limited benefits DO NOT outweigh the hassles and volatility.

The Symlin folks have been so focused on their money-maker, Byetta, I don’t think they have spent enough time or done a very good job of figuring out the best way for diabetics to use Symlin - it needs more study, and they need to provide more guidelines and direction. I’m tired of having such wildly unpredictable results!!! And I’m talking about delayed spikes that are higher than I ever had without Symlin.

AND IT’S NOT FOR LACK OF EFFORT!!! I have tried following Jason’s guidelines - and I’ve tried just about every other strategy folks have shared here.

I’m tired of being a guinea pig for a pharmaceutical company.

I am happy to be a ‘guinea pig’ in exchange for the opportunity to use this wonderful new drug which has potential to greatly improve many lives, including my own. YES, it’s frustrating. I don’t know many aspects of diabetes that aren’t. However, I don’t think it’s fair to take that frustration out on the drug makers who are working very hard to provide us with the drugs that we need to stay alive and have a decent quality of life. If the drug weren’t proven safe and efficacious, FDA would not have approved it.

Sorry you’re having such a hard time. I would advise working with your doctor in this type of situation, since it seems like random medical advice from the interwebs isn’t working out for you. :slight_smile:

I respect your opinion - and your right to that opinion - I just don’t share it.

And I don’t share your faith in the FDA.

You’re joking about the doctors and symlin, right? Read through a lot of the posts here - most of them know far less than we do about the drug.

The nice thing about TuDiabetes is that I can say what I think.

But I notice you work in the pharmaceutical field so I can understand your feelings.

Yeah, I do work in pharma. I was actually inspired by all the great advances in diabetes drugs and devices that have occurred since my diagnosis 18 years ago and I wanted to be part of the team of people working to do the same sorts of things for other people with chronic illnesses. (I’m currently working with CF stuff.)

Your comment about the FDA is fair enough. Unfortunately, I think they just don’t have the resources they need now to really be as effective and efficient as we (as patients) would like them to be.

I see your point about the doctors and I have heard similar posts here on Tu. I guess I tend to forget that, since I’m lucky enough to have a really excellent PA and diabetes educator to work with - both of whom have Type 1 themselves, so they really understand firsthand all of these problems.

Anyway, I truly am sorry that it’s not working out for you. I honestly take breaks from Symlin from time to time b/c of the frustrations, but I always go back to it and I’m very glad to have the option of taking it available.

All the best,
Carolyn

Thanks, Carolyn. I agree - FDA is underfunded and too “familiar” with the groups they’re overseeing - sound familiar? (can you say Wall Street? "-) Let’s hope that changes.

I think this drug has - and the whole idea of replacing amylin - has LOADS of potential. I just think it’s not “fully baked” yet. But I would fight for your right to take it!

Take care,
Cheri

It is hard and I think I’ve seen at least one other person who had written that symlin seemed to create bigger spikes. For me if I just take 3 units (I have vials…but I think it’s around 15mcg). I mostly just get the benefit of satiation and I think it doesn’t spike as quickly and then drop…but is a little smoother. I also did not have to decrease my bolus at all and did not wait to inject~I think for me the bolus can take awhile to kick in…and so the symlin helped to slow down the food digestion so it macthed up better with the insulin.
The more symlin I took though the more volatility I experienced. So now I only really use symlin for high carb meals that don’t have enough fat or protein to slow down absorption… I don’t think everyone necessarily needs the same end amount of symlin…really thinking about since it’s also a hormone like insulin one might think that the amount needed by people would vary more…so it would be nice if they did more research on this…
I also saw someone had mentioned that sometimes after the symlin wears off…it can produce a spike~but not sure why or how this happens

It’s working so well for me, once I figured out the pharmacokinetics of it all, that I think everyone should be on it (LOL). They do need an education/school for it- as we are all different.
good luck to you.

I hear ya…I really do think the Symlin folks need to go back to studying this drug and figuring out the best way to use it.

Good luck to ya I’ve found that, at this point, I don’t really need it anyway. With the pump, exercise, going low carb and using only combo bolusing with TAG (read about TAG here - https://forum.tudiabetes.org/topics/dual-wave-bolus - but you need to read all the way through), my numbers are DARN GOOD! In fact, better than ever! No spikes. I realize TAG is what I should have been doing all along - Symlin is no substitute for it.

Hi there -

Well, once I started following a lower carb diet, I didn’t get big spikes but sometimes, when I had accounted for all carbs in my bolus, I would still get a spike. Once I realized it was because I wasn’t accounting for proteins and fat (TAG), and started doing so, my numbers have been soooooo smooth.

If you’re spiking that high after eating, I would say you’re not adequately bolusing. I think I saw that you were using the Omnipod? Is there a square or dual wave or some other name for an extended bolus? That’s part of TAG, too. So it’s using an extended bolus for each and every meal plus accounting for proteins and fat.

There is a new group forming around TAG because so many have had good results - it’s here - http://www.tudiabetes.org/group/tagers?xg_source=activity

Check it out and let me know if you have any questions.

I take my symlin and Novolog right after my last bite. I only take 15mcg, unless its a big bread meal (30mcg). My numbers are smooth as can be! I cant believe how good they are sometimes! Just an idea if you havent tried it yet. Doesnt do much to kill my appetite like this though :frowning:

I haven’t given up on Symlin … yet…but I sure do feel like doing just that. I’ve been using Symlin about 1-1/2 yrs and have yet to figure out a method to get it to work smoothly for me. I’ve tried so many ideas from my Endo and my CDE that I feel like a human pin cushion and I have the bruises to prove it.

All of this discouragement makes me feel like giving up on me too. For example this morning my fbg was 100. I had breakfast of scrambled eggs, a little grated cheese, small carton of ‘light’ yogurt and 2 pieces of raw apple. Two hours later my BG was 175 and the 3 hour mark was even higher at 187.

Cheri - I’m glad you have found this other group, TAG, and that it works well for you. I’m beginning to think there is nothing that will work for me, but I’m happy for you.

Hi Mayumi -

For the breakfast you described - you didn’t say how much you had bolused for it?

Don’t give up!!! Please visit this new group just formed - http://www.tudiabetes.org/group/tagers - and read about the TAG method.

This has given me the results that I had always hoped for with Symlin!

Cheri - I counted the yogurt as 15 carbs as per the label on the carton, the raw apples as 10 carbs as I weighed them on my Salter scale, and the eggs and turkey sausage I did not count. When I originally went through a ‘diabetes education’ class I was told that I did not need to count protein - as long as I did not go way over the portion suggested.

I bolused 2.5 units of Novolog for the 25 carbs eaten. My I:C ratio for breakfast is 1-10. Obviously I did not count the carbs correctly PLUS, today was the OmniPod change day. I always get elevated blood glucose when I do that in spite of doing an additional 3 unit bolus independant of the breakfast bolus.

My brain is so tired from trying to get things right.

Hi Mayumi -

I’m going to assert that the elevated BG is the unaccounted for protein and fat…I know that most medical people will tell you that you only have to account for carbs - but many diabetics know better. TAG is based on the fact that a percentage of proteins and fats are also converted to glucose. I will message you some more information shortly.