Hey everyone, I’m new to this forum but not diabetes. I’ve had type 1 now for 32 years. I am currently taking humalog through a pump , I wear a cgm and take the symlinpen in hopes for better numbers at mealtimes. My numbers aren’t terrible, i actually have a 6.5 A1C which I think is ok but I always strive for better. My question is has anyone taken or is now taking the symlin pen? I’m looking for recommendations on how to get it to work the best with timing and dosing. I haven’t really gotten that much help from calling the symlinpen number and I don’t think many people know to much about it.
Please let me know . I am currently taking 45 2x a day. One at breakfast and dinner. I workout after dinner so I hold off in fear that I’m going to plummet. I feel sometimes as soon as I take it I go low pretty quick but then go high just as quick like a hour or so later. I also couldn’t push the symlin pen down far enough to inject one or two times… It somehow was stuck. Has this happened to anyone before? Please let me know if anyone has any information on this.
Thanks!
@Alliedee1984 Hi Allison, and welcome to the JDRF TypeOneNation Forum!
No, I do not use the Symlin Pen. And, I’m not a licensed medical provider, so my response is just my thought based on living with diabetes and insulin for 64 years. To me, injecting Symlin while using an insulin infusion pump loaded with Humalog analog insulin is counterproductive, as well as, extremely dangerous. Each “benefit” gained from Symlin for a person living with Autoimmune [T1] Diabetes can be better achieved by proper programming and use of FDA Approved currently on the market. I don’t mean to sound harsh, just my experience.
In-Range pre-prandial glucose readings are usually best achieved through a combination of basal rate settings [lower = better] combined with effective carb:insulin ratio for prior meal; post-prandial BGL [Body Glucose Level displayed by your CGM] readings are achieved by I:C Ratio based in relatively accurate carb counting plus/minus correction calculated with you ISF [Insulin Sensitivity Factor] for the time of day; if needed for your particular situation, the meal time bolus can be infused with your pump either at beginning of meal, during meal or, before meal.
The US FDA provides the following cautionary notice to prescribing physicians:
WARNING: SEVERE HYPOGLYCEMIA
Symlin use with insulin increases the risk of severe hypoglycemia, particularly in patients with type 1 diabetes. When severe hypoglycemia occurs, it is seen within 3 hours following a Symlin injection. Serious injuries may occur if severe hypoglycemia occurs while operating a motor vehicle, heavy machinery, or while engaging in other high-risk activities. Appropriate patient selection, careful patient instruction, and insulin dose reduction are critical elements for reducing this risk.
I’m not familiar with Simlyn but have been using a pump for many years. The pump should be programmed to deliver sufficient basal insulin to keep numbers in range, and a carb ratio to cover the foods you eat. Injecting on top of insulin delivered via pump can be dangerous, especially if you are taking that much twice a day. If Symlin + pump is a new protocol I’m not familiar with it. We are encouraged to be our own doctor but I wonder if this was put in place by your physician? If you need additional insulin to achieve the control you want I would recommend you speak with your endo about adjusting your pump settings - I’ve found small changes of 0.1 unit or even less have made a big difference for me. Perhaps working with your doctor to change some settings will get you where you want without the danger of yet more insulin or other injectable.
Adding later
I’m not a physician, and in my comment above I expressed concern about the amount of Symlin you take, thinking it was an insulin product. I had done a little (very little) looking online before I wrote them, but with further reading I see what you’re taking is one of the recommended doses: so forgive me for speaking out of turn on that. However Symlin does come with cautions about the risks of going low and again I would advise you to discuss that medication and alternatives for getting the tighter control you desire, especially since you are using a pump.
I grew up with diabetes before “tight control” - you did the best you could to keep sugar from spilling into your urine at least too much (I’m ancient and grateful to be). When tight control first became “a thing” I heard stories about people going so low they lost consciousness while trying to achieve it. Thankfully‼️ now we have CGMS to help, but they’re not perfect. 6.5 is the “introductory number” for diabetes according to what I pulled from the ADA https://www.diabetes.org/a1c. So as see I it in my personal, non-medical opinion, it’s not bad. You have diabetes and your desire to get your number into the range for those who do not have it, is admirable but be careful in how you get there; and if your numbers tend to run very close to 100 - consider allowing yourself some cushion for error or unexpected events. But most of all discuss with your doctor the goal that is safe for you in terms of target BG and A1C.
Thank you for your response. I am aware that it causes low blood sugars. My endo has significantly decreased my icr to prevent those lows. I wanted to try the symlin to cut back on the amount of insulin I take. If I go off of it I will most likely double the insulin amount which I do not want to do.
@Alliedee1984 Thanks for bringing this up. I’ve read a bit about symlink and wondered why I hadn’t heard about it more here on JDRF, FUD, Juicebox, or other forums. It doesn’t seem all that new, but not exactly old either. Please post the results of your trials with it for the the rest of us to consider. Thanks.
Hello! I’m a T1 and new to this forum. I was just reading through these old posts on Symlin and wondered if any of you ended up having success with it.
I used Symlin when it was first out, then it stopped working so I started Victoza until my insurance stopped paying for it. When I first started Symlin it worked like a charm. It was such a bummer that it stopped working. Victoza was even better! I spent many years with just insulin. Recently I have been having a lot of trouble with post meal highs, even when I don’t eat carbs. I tried Metformin but couldn’t tolerate the intestinal distress, so I started Symlin again a couple days ago. My doctor was very reluctant to prescribe it, which is really surprising to me considering we T1s have few options. She eventually prescribed it, mainly because of the success and experience I had taking it before.
Has anyone here started Symlin, had it stop working and then start again?
Welcome to the forum @WendyHatte I am sorry I don’t have any experience with symlin or pramlintide, i just wanted to say hi. I hope one of our participants can help.
Hi @WendyHatte and welcome to the forum.
I’ve never used those meds but here are a couple of thoughts:
It sounds like Victoza worked best for you. Insurances sometimes change their preferred formulary, but it’s possible to get an override to continue it if your doctor provides sufficient cause.
Now that you’re back on Symlin, maybe it will take your body a little time to adjust. Hopefully that’s the case since it worked so well before, at least for a while. On the other hand maybe it just no longer works for you - time will tell although of course you don’t want to go too long if your numbers are running high.
I’m not familiar with how Symlin and Victoza work. From what I gather, neither is an insulin but the are sometimes used alongside it to manage BGs. What insulin are you using with them? Maybe changing the insulin itself will give you better results: with basal people have reported success with splitting the dose or changing the time they take it; and pre-bolusing for meals can help moderate the rise afterwards. Of course I don’t know how Symlin or Victoza fit with that so please use this as a jumping off point to discuss with your endo.
Ideally your return to Symlin will be successful and will continue to work.
@WendyHatte Hello Wendy, and welcome to the JDRF TypeOneNation Community Furul!
I can easily understand why your doctor was reluctant to prescribe Symlin for you; but I won’'t debate that here.
It is also easy to know why Victoza was dropped from your insurance formulary; with more than 800 lawsuits logged against Victoza, the US FDA issued some kind of ban {or warning) its use in the USA.
Thanks for the info about the Victoza lawsuits - I wasn’t aware of that!
Thanks Dorrie, your post is very kind. I hope Symlin works for me too!! You are right about insurance. They are always changing their tune!
Wow, I had no idea about Victoza! I will look into it, thank you!