Hi all! I thought I would start a discussion devoted to the use of Symlin. For those of you who are not familiar with Symlin their website is here: http://www.symlin.com. However, my own experience has taught me that the information given out by Amylin Pharmaceuticals is a bit lacking when it comes to actually using the stuff, and since it is so new to the market, doctors may not know anything more than what the pharmaceutical company puts out. Since I know there are others of you who are using it, I thought we could share our trials and tribulations.
I started using Symlin in August of 2006 because despite a pretty good A1c, my numbers were bouncing around too much, particularly after meals. So far the results have been mixed for me. I take Symlin at breakfast and dinner only, and while my blood sugars following dinner are actually pretty stable, I cannot get my morning blood sugars to behave, as they actually drop during the first hour, and then rise and peak at 2-2.5 hrs somewhere in the 200’s. Prior to starting the Symlin my morning post-prandial was usually the worst of the day, so it is no surprise that it is the hardest to figure out. I recently switched from injections to the pump, so I am going through an adjustment period and expect to see some weird numbers. My current procedure in the morning is take 3 units of Symlin when I start eating (breakfast is usually a bowl of Kashi GoLean Crunch and a small banana) then take a combo bolus with 40% up front and the rest over 1.5 hrs. This keeps my blood sugar stable for the first hour following breakfast, but then by 2 hours I have probably risen 100 mg/dL.
I have no personal experience with Symlin (I’ve asked my endo, but he has no patients on it presently), but I did think it was worth sharing the following medical/scientific journal publication references on amylin replacement (Symlin is an amylin analog, amylin being another hormone produced by the pancreatic beta cells, which is completely missing in people with type 1 diabetes).
Amylin Replacement With Pramlintide in Types 1 & 2 Diabetes: A Physiological Approach to Overcome Barriers With Insulin Therapy
Scientific overview of new Type 1 diabetes treatment SYMLIN From the journal Clinical Diabetes. Many insulin-treated diabetic patients still fail to achieve optimal glycemic control and continue to experience problems with hypoglycemia, weight gain, and postprandial hyperglycemia. Adjunctive therapy with pramlintide, a synthetic analog of the human amylin hormone, facilitates a significant improvement of postprandial and overall glycemic control in patients with either type 1 or type 2 diabetes without an increased risk of hypoglycemia or weight gain. http://clinical.diabetesjournals.org/cgi/reprint/20/3/137
Effect of Adjunctive Pramlintide Treatment on Treatment Satisfaction in Patients With Type 1 Diabetes
The following article shows that patients with type 1 diabetes had greater satisfaction with treatment after receiving Symlin compared with placebo, according to the results of a study reported in the February 2007 issue of Diabetes Care. http://care.diabetesjournals.org/cgi/content/abstract/30/2/210
Impact of Pramlintide on Glucose Fluctuations & Postprandial Glucose, Glucagon & Triglyceride Excursions Among Patients w/ T1DM
In this study, the addition of pramlintide to insulin therapy reduced excessive 24-h glucose fluctuations as well as postprandial glucose, glucagon, and triglyceride excursions in patients with type 1 diabetes intensively treated with insulin pumps. http://care.diabetesjournals.org/cgi/content/full/26/1/1
I have heard mixed reviews from people who use Symlin, most notably, I have been told that patients should not rush getting to the full dosage, as some people experience nausea which can be managed more effectively by increasing the dosage more slowly. I’m curious what other users’ experiences with Symlin are.
I have been on Symlin before, but I stopped. I couldn’t deal with the nausea that came along with it. However, I don’t think I was educated enough in its use before I started. I was skipping doses because my endo said I didn’t necessarily need to take it if I thought it would be inconvenient. So here’s a tip: don’t go for a few days on, and then take one or two off. You may not like the results.
Honestly, though, I think I’d like to give Symlin another try. I have plenty of high BG’s after meals, and I need to lose some weight. I sound like the perfect Symlin candidate!
I really hope the second time around won’t be so unpleasant. I’ll be sure to take it slow. I’ve heard some people have had excellent results with it, so I think it would be worth taking the chance.
ive been using symlin since march 2007. umm. its rough. it is a major time commitment and i still feel constantly sick to my tummy. i lost like 15 pounds because i could hardly eat anything for the first 2 months. now i am able to eat a little more, but i still get full really fast and no matter how little i eat i get a major tummy ache after meals. i take 10 units 3 times a day and i try to be pretty consistent. so far we cant tell if its making a substantial enough difference to justify. plus, i just found out that my horrible insurance (3 cheers for the non-profit industrial complex) won’t cover it. bleh.
i dont really want to go off it now though. i dont really mind the extra injections and after 3 months my body is finally starting to adjust and im seeing some major fabulousness in my sugars. so, it would be sad to have to go off it and adjust back and be a mess again after coming so far.
still, i cant afford to pay $150/mo for one vial if my insurance continues to refuse to pay. so that might leave me back where i started. its a sad, sad corporate world. that’s why we’re here with some sick, sick solidarity.
I started up on Symlin for the second time about 8 weeks ago. I was on Symlin about 2 years ago, had lost a lot of weight, got sick of taking Symlin and stopped taking it and gained back the weight I had lost plus 10 more pounds. So I started up again with a goal of losing weight and staying on it. I’ve lost 20 lbs and continue to lose weight and I’ve discovered that as I build up tolerance I must increase the dosage. I’m now up to 20 units (120 mcg’s) before breakfast and about 40 units (240 mcg’s) before lunch and the same before dinner - about 100 units (600 mcg’s) per day. The nausea has almost completely gone away but I have just enough of that “Symlin feeling” so that I’m not that hungry at meals and my control has gotten much better including a drop in my A1C of about .8 point since my last visit.
So I called the Symlin hot line to find out if there is a problem with overdosing and they were only aware of low sugars and nausea, which has not been a problem as I have increased dosage slowly over time and very carefully. They said I’m definitely on the highest end of dosing that they’ve heard.
Has anyone heard of any other issues with large dosages of Symlin and problems with it over time. What else does the hormone amylin do to our bodies besides the slower digestion, slowing the release of glucagon, controlling blood sugars…?
Stats:
Type 1 Diabetic 38 years
Medtronic Pump - 13 years
Last A1C: 7.9
Height 5’9"
Weight 178 and going down, goal 165 (was 198 when started Symlin)
I’ve been on Symlin for a few months now, dropped about 15 lbs. My blood sugars are better when I take it. I don’t take it in the morning, I get horrible nausea and it’s not worth it then. Lunch and dinner aren’t so bad. You definitely need to titrate up on the doseage to prevent nausea whe you begin.
