Symlin
This is the 45th in a series of discussion forums at Diabetes.Blog.Com, and is a forum for discussions about Symlin. This Symlin forum was activated to allow comments on April 15, and at that time, the previous Symlin Discussion Forum was deactivated to prevent more posts to that forum. However, you can still read the earlier comments, and search for information throughout any forum, by using your webbrowser’s FIND or SEARCH feature while at the earlier forums, or by searching at the advanced search feature that is at the Diabetes Monitor.
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Posted by in 05:00:00
The company (Amylin) indicated today that Symlin will be available in a “pen” version, similar to Byetta, later this year.
The pen version was actually used for some of the original clinical trials for Symlin; however, there has been no explanation as to why it has taken so long to get the pen to market.
From: Rich,
I’m type 1, 25 yrs now. 4 Months ago, my BG control began spiraling. I had 229 – 330 BG swings with meals. I have been on large dosages of Lantus 140, Humalog 10-15 w each meal & 2,000 mg Metformin. Rarely below 200BG. Tried every medication & combinations, even the new Exubera inhaled insulin in combo. After 2 wks of success Exubera stopped working & my numbers went back up. 3 Wks ago, I tried Symlin. My initial dose of 10 units left me in a delerium for hours. It caused a 180 pt drop within 1 hr. I cut it back to 5-8 units which still brought about extreme nausea & dizzyness for 2 wks. BG numbers however were 85, 115, 145 even for extended periods throughout the day. Week 3, I have cut back the Symlin dose to 5-8 units routinely in the evening before bed. Humalog use is way down 5 to 8 units per day, which is way less than 1/3 normal use for me. I still experience nausea but no where near as bad. Hoping wk 4 will allow for further adjustments, perhaps larger doses to allow retreat use of Lantus.
Sarah,
My doc suggested going down to 50% of my regular bolus. I am on a pump, and she suggested doing a square wave bolus with a 50/50 split with 2 hours for the second half. What that means is I immediately get 1/4 of my regular bolus, and then over the next 2 hours I get the the other 1/4. It seems to be working well so far!
jill, type 1 since 1994, humalog & lantus, symlin since sept 2005, exercise daily,
I recently started symlin and I am also experiencing the tiredness. It could be the weather today, cloudy in Albuquerque… I have noticed I get headaches when clouds are out. I took a long nap after my first dose, but I don’t know if that was due to the slight nausea. That has subsided, but I definitely feel a lack of energy. Do you still experience that?
These comments have been tremendously helpful. I just filled a prescription for Symlin yesterday, but am waiting until the weekend to start because of the side effects that my doctor reviewed with me. After reading through all your comments, I’m both hopeful and extremely nervous about starting the medication. I’ve been struggling with my bs for at least a couple of years now and with some recent additional autoimmune complications, really need to get them down to an acceptable level. I’ll be checking back here to see what other information I can glean from the shared experience. Thank you.
Bella’s Mom,
Your decision to wait for the weekend to start Symlin is good. Stay within “quick reach” of a bathroom. It will probably be ok by Monday am.
Symlin takes a while to get used to. The most likely issue during the first two weeks is insulin dosing. I assume your doc told you this, but going to 1/2 dose on all insulin is a good starting point … don’t be surprised if your bs runs high initially … slowly adjust the insulin to fit your own needs … everyone is different.
I was on Symlin for a year and have since switched to Byetta. Symlin is excellent, but not an easy drug to “start up”. Be cool, hang in there, it will all “happen”! In a few weeks you will probably start feeling better than you have in years!!!
going to be starting symlin tomorrow. I had to switch from byetta to symlin due to my insurance refusing to cover it and I would need to go through the run around each time I refilled.
So my new journey begins, hope it is as good as byetta was for me
Weekend went relatively well. I didn’t have any nausea and was able to move up from 2.5 units to 5 units. Staggering my long acting insulin (now I take it a couple of hours after a meal) and learning how much of the fast acting (because I’m insulin resistant, its nearly a 1:1 ratio) to take – 50% less didn’t work for me – were my two big lessons learned from my first time with symlin.
Most of my numbers have been under 200 – not great, but pretty good for what I’ve been dealing with. I’m noticing that when I test an hour after the meal, I’m still pretty high, but then right before the next meal, I will have dropped significantly. Due to the delayed food metabolism from the symlin?
Thanks for the comment and support.
well here is the first report for me on symlin!
My doctor with held the novolog and wanted me to just start the symlin to see how I did along with my levemir at a slightly reduced dose and metformin.
She did not want me to do two new drugs at the same time.
I started on a low dose over the weekend and have now been able to increase it.
I felt the same kinda bloated burpy not hungry feelings as the byetta did to me. Cannot eat the same as with the byetta without a little extra insulin so am on a reduced carb diet again.
My BS runs higher now by 50 to 70 points so will be going up on the levemir by 2 units untill I get back to where I was prior with the byetta.
I am on the 10 unit dose of symlin starting today and no ill side effects so far.
This drug is great at appetite reduction!
My weight is holding steady at 237 so that is good too as I do not want any gain and am hoping for future losses.
Symlin Problems
I am Type I for 41 years, 43 years old, Minimed 715 Pumper for 2 and a half years, latest AlC 7.0.
I have been frustrated with my inability to control post-prandial blood sugars and the length of time it takes to get them back to normal.
I pump Novolog. I tried Apidra which did not work any better.
My endo suggested I try Symlin. My doctor game me a sample vial. The vial looked fine. I refrigerated it. I tried it at dinner time. I took it right before a ate. I took 2 1/2 units in the syringe that came with the medication. Within a short period of time, I felt a tightening of the stomach and chest. I felt pain down my left arm. I began having shakes and tremors. I got the chills. My wife took me to the ER only a couple of minutes away. My BP was 213/154 upon admission. As time went on, I felt better. After two and a half hours, my BP was 113/78. My EKG and blood work were normal. My only logical explanation is that I had an adverse reaction to the medication.
I will say that the medication worked during the first two hours, but as others have stated my BS spiked after 2-3 hours.
But for the dangerous adverse side effects, I would cotinue to use the product. For me, however, it will not work. I do not think I have the courage to try Byetta after this episode.
Let me know if anyone else has had such a problem.
Thanks.
Mark
Mark,
byetta will not work for T1 diabetic as you need a functiong pancreas for this drug to do its job
The Babe I remember reading your post when I first started on this blog. LIllie T2 1999, Byetta,Nph Insulin, Glyburide 2.5 Bp Meds. I just wondered if the Symlin is just expensive as the Byetta. I am not a whiner if it seems like it. I just want to be sure I can continue on my byetta or if symlin will work as well, my bs numbers are down well lost minimal amount of wt at last Drs visit .To go to Dr. in September anxious to see what A1C is and weight according to his scales. If anyone doesn’t tolerate the byetta well and wants to get rid of it I would like to hear from them or is this against guidelines. I would hate to do anything against the rules. I relly do enjoy the posts I have learned a lot. Retired nurse worked for 35 years in hospital and ended up retiring early due to bad osteoarthiritis, knee replacement after retired and have never gotten back all my strength Since The Big D ravaged my body. Lillie
if its any help I am on 20 units twice a day and need around 3 vials a month at the expense of 150 dollars my cost with insurance.
So it is a little more than byetta but not by much and would be dependant on the dose you would need too.
Greetings!
I’m a 42-yr-old T1 diabetic, diagnosed about 8 years ago. I’m extremely conscientious about my db management, have a good diet and exercise consistently. About 2 yrs ago, however, my BS #s started going crazy and I also started gaining weight fast. My Hba1c’s gone from 6.1 to 7.6 and within about 6 mos. I gained 25 lbs (it’s pretty much stabilized now, but I’ve cut out all alcohol, sugar, white flour, etc.)
My endocrinologist finally suggested I try Symlin. It’s been about 3 wks now, I’m past the initial (mild) nausea and taking 10 units per meal. It seems the longer I take it, the less effective it is. At first I could go 5-6 hours without feeling hungry, but now I seem to be edging back to my 3-4 hrs b4 needing a snack. I don’t eat a lot… maybe 1200-1500 calories per day. Also, I’ve only reduced my total insulin intake about 25%. Haven’t seen any weight loss either and my BS #s are still all over the place.
Has anyone experienced this? Am I being too anxious? Does it take awhile to
is 10 units the max dose that you can take?
You might try this after you run it by your doctor – I have found that if I inject the symlin and wait for 45 min, then inject my novolog and eat that the symlin really kicks in.
I am just now getting my novolog dialed in and things are looking good, no weight gain but no loss either.
Symlin seems to not have the queasy side affects that the byetta did and I just do not feel hungry with it.
Thanks, Diane… I really appreciate your tips
My dr. told me to stick with the 10-unit max for the time being, so I’ll see how it goes…
Best,
Kelly
Quelix,
if you are T1 then you really do not want too much apetite suppression as you will go low at the 3 hour +- mark after your meal if you do not get at least 30 grams of carb to eat.
Isn’t it fun getting meds dialed in
!
I started using Symlin about a month ago and it has worked well for me. I have been on the pump for several years and I do not like the injections that are needed for this drug. I can’t wait until I can put this in a pump maybe one with two reserviors????Since Symlin is not needed during basel periods. I wear the Dexcom real time glucose monitor and I can see the difference when using this drug. I would see my glucose rise to 300+ after eating a bowl of rasin bran then it would come down to
Ok…I pop into this forum every now and then read everyones comments (they are pretty helpful). At present I take metformin 1000mg twice daily (6mo), Byetta 10mcg twice daily (2yr). Readings fluctuate between 7-9 (a1c). Nausea has not really been a problem except for an occasional bout that seems to last 1-2 weeks. I will say that I was one who did not lose any weight until (1 plus year on Byetta) I stopped taking Actos (30lbs since stopping Actos). I have a couple of questions…It was suggested by my Endo. that might want to start Symlin. Has anyone switched from Byetta to Symlin and what would be the benefits? Does Symlin reduce appetite better than Byetta? 49 yo male
I am a 19 yr old college student. I am struggling with controlling my blood sugars I have been on the pump for 2 years now. My ha1c is at a 9.2 I am trying really hard. My bgs just go up and down a lot. My mom wanted me to try symlin I am just scared I guess. I do not want to be taking multiple additional shots. I weigh 135. My Dr said I am showing signs of insulin resistance. Does anyone have advice for me?
Molly,
Sorry about the previous blank message. I am a 31-year old female. Have been Type I for 26 years. I weight 110 also, so am very small. I am just giving some experience I have had. You and I sound somewhat familiar. For past 3-4 years, my sugars have been so very erratic. Not a whole lot of pattern to adjust basals, and I’m getting very frustrated. Last year, I started Symlin and went from a 6.9 A1C to 6.2 and overall, had good experience with Symlin. However, it seemed after about 6 months, it wasn’t working as well and I was having dramatic lows at times. I went off of it in Jan of this year, but decided to give it another shot as of yesterday. My A1C is now 7.2, I have extreme highs in the 300′s and at times will go as low as 30-40. However, I have been having more and more highs and am beyond frustrated. I have always tried to watch my health in all aspects. I exercise regularly, and am an RN so am aware of a lot of health things….I am considering drastically changing my diet as my swings are awful, and the only time they are stable is overnight. I am also on a Dexcom CGMS.
I’m a pumper, Type I with 6.8 A1c trying to get rid of meal spikes. So doc put me on symlin. With the initial 2.5 units, I reduced my supper bolus by half and still got very low. Over the next few days I kept reducing and now I’m at 1/5 my normal bolus rate. My sugars are great for 2-2.5 hrs past a meal, but then at about hour 3.5-4, they spike and stay high through to about midnight to where I’m bolusing several times to combat the high. What’s going on? Seems a catch 22. The only thing I could think of, was that my basal rate was way off and I was unknowingly
New Symlin user here. I am trying th Symlin without the Novolog for now, I was on a 15:1 carb ratio, I typicaly only eat 20-30 grams of carbs at a meal. The doctor wanted to see how I will respond to just the Symlin. Has anyone else tried this and how does it work?
I will try again, my story, at age 15 I had a ignored case of strep, when I was taken to the dr it was very serious. I was told at 16 that I had diabetes, the dr was from another country and gave my mother and me no information. I have been on many of the oral diabetes pills. I was put on insulin durning my pregnancy in 84, then taken off, then in 86 I was put back on insulin and in 89 I stopped on my own. I had lost 30lb, and weighted 90 lbs and I felt terrible. I never checked my BS but a different dr appt, blood test showed fasting being higher. In the last 8 yrs I have lost 1 adrenal gland, I have Psoritic arthritis/psorsis, Valley fever and MVP/stenosis. My new Dr says before testing that he think because of the cluster of Autoimmune diseases I have the Strep I had was most likly Rheumatic Fever. Do to the heart problem and bone problems and Valley Fever that this diabetes is Type 1. My BS are all over the place, I am so carb senstive its almost unbelieveable. I eat low carb. Lastnight I ate meatloaf, and 1/4 cup mashed potatoes. I had later that night peanut butter spoonfuls. This am my BS was 175, then 3 hrs later 135, and 4 1/2 later 117. My A1C in Aug was 7.0 I have lost 20 lbs for no reason. Do u all think Insulin is the answer? Pills and Byetta did nothing to balance or change my BS. So he took me off the Byetta for that reason he said. He did loots of blood work and heart tests and blood flow tests. I get the results on the 26th.
Forgot this the Dr. said I am most likely type 1 because of the link between the cluster of Autoimmune diseases. he is doing insulin tests and some others to see if I am. I think he is right. But with a 7.0 A1C what is a good number control a1c with being on insulin
Strwaberi: I’m sorry to see this, but if you can get the help you need, I will be so glad. Your story was always unusual. If you are type 1, insulin plus Symlin might really help. Good luck!!
DianeW, t2-2003, Symlin 8-2007, Metformin 850 X3, levemir, novolog,,
I’ve just read your post about starting on symlin and that your doctor has told you to take symlin at night? You need to run from that doctor or turn them in. Symlin isn’t going to help you one bit that way I’m sorry to say. It’s to be taken at MEAL TIME ONLY! and ONLY if you have 30gm of carbs or more. It has HUGE WARNINGS about this on every one of their publications. I certainly hope you don’t crash while you’re sleeping. At least with being HypER it’s a slow death.. hypO is a quick death. Best of luck.
DianeW, t2-2003, Symlin 8-2007, Metformin 850 X3, levemir, novolog,,
I’ve just read your post about starting on symlin and that your doctor has told you to take symlin at night? You need to run from that doctor or turn them in. Symlin isn’t going to help you one bit that way I’m sorry to say. It’s to be taken at MEAL TIME ONLY! and ONLY if you have 30gm of carbs or more. It has HUGE WARNINGS about this on every one of their publications. I certainly hope you don’t crash while you’re sleeping. At least with being HypER it’s a slow death.. hypO is a quick death. Best of luck.
I have to make the decision to use symlin today.I have been a diabetic for 25 years and use insulin pump for 4
years. my ac1 is 8.9. I am a nurse that works 12 and 8 hour shifts, sometimes I can’t eat until I get home at midnight or 8pm. I don’t eat breakfast it makes me nauseous, most days no lunch, but I snack during the day because of no time to sit and eat.my bs are high and I gaine weight without eating much, my bs run between 120-300.I gained the most weight I have ever been.I am always tired,no exercise. Iam 36 but feel like 46. I need some help I don’t like myself right now.I think I will say yes to symlin.
Why is it used together with insulin? Isn’t the insulin enough? Anyway I just discovered I have diabetes.. I’m 29 years old.. and still pretty shocked. I always considered my organism tough and healthy.
Please help me..
I have been diagnosed with insulin resistance and metabolic syndrome. For about 2 years, metfornin, exercise, and diet helped but then my blood glucose numbers went up and the doctor gave me Byetta which I couldn’t take. For about 2 months now I’m on symlin – I don’t take insulin. I’m up to 30 units of symlin 3X a day. It doesn’t seem to work – no impact on glucose readings, I’m gaining weight, have had three colds, Will see doctor next week but I’m wondering if anyone has had similar experience
My doctor recently gave me some literature on Symlin. I’m still on the fence. While there are many pluses, the negatives are weighing heavy on my mind. How bad is the nausea? Has anyone actually vomited? Also, has anyone experienced weight loss? I’m a T1 diabetic for 40 years, on the pump for 4.5 years. I am overweight and my endo suggested I give it a try.
I am 48, have been T1 diabetic for 35 years. On pump for two years. My dr. started my on Symlin about three weeks ago to help regulate my sugars and to try to lose weight (oh how I wish there was a magical pill). It does cause me to be slightly nauseous, but it doesn’t last long. Seems like I’ve lost a couple of pounds. I’ve also started to write down EVERYTHING that I put in my mouth. I really like Symlin, it seems to really make a difference in my appetite, and regulating my sugars. I recently had to adjust my basel rate during the noon hour, sugars were dropping low. Experiencing lows in the morning, so I’ll need to adjust then also. But so far, hooray for Symlin!! So far, so good.
I just started on symlin a week ago. My doctor told me to take 15mcg before dinner.
I didnt have nausea, i felt a tad bit full but not much, my blood sugar didnt go down. So my doctor upped my dose to 30 and then 45 and now it’s 60..still nothing.
Is it possible to just be resistant to it?
I get a very upset stomach, but that’s about it.
What do I do?
I just started my symlin today – I am so frustrated.
what do you mean about bm problems?
and stomach pains? like gas, or like nausea?
Well, I just started on Symlin today. Type 1 for 35 years,45 years old and 10+ years on the pump. I’m also an rn, and working as a diabetes educator (I sit for my CDE in June.
Lately, I’ve become (relatively) insulin resistant, which my doc blames on stress-I have to agree,2008, so far has been a booger.I believe what is going to be the most help for me is decreasing glucose release from the liver as a stress response. But so far (two shots breakfast and lunch,15 mcgs.) my post meal numbers have been extraordinary. I suspended my pump for a little while after lunch when I went dramatically to 79, but nothing unmanageable. this board is a great resource,but I have to ‘feel’ for the folks out there that obviously have crappy docs and no educators that know anything about Type 1. Wow-bad news.
Celadon9: You are so right. I personally think anybody with diabetes (type 1 or type 2) needs a CDE, especially at first. But you wouldn’t believe how many people are never referred to one.
I am “pre-diabetic” and my last fasting insulin was 49, even after losing 30 lbs, exercising at a high intensity 5 times weekly and having a bmi of under 25. my metobolic doctor switched me from metformin to byetta. within 2 days, i was experiencing very strong estrogen symptoms; tender breasts and weeks later, the worst premenstrual cramping in 30+years. my ob/gyn ran blood tests and my estrogen was three times higher than normal. the docs took me off and the estrogen went back to normal. now my metobolic doctor wants me to try symlin. i am hesitant as the last thing a pre-menopausal woman wants to do is mess with her hormones or be put into an unhealthy estrogen dominant state. has anyone out there had any similar experiences? or can give advice regarding byetta vs symlin. my doc says there’s nothing written to corroborate my reaction. i am going to see a reproductive endo next, but wanted to hear from users for more info first. thanks much for your help!
Jerri: I don’t have an answer, but I’m so glad you are seeing an endo. Usually, Symlin is used by type 1 diabetics who are insulin dependent. Byetta tends to be for people with type 2. I’m confused. Did you mean insulin or fbs? A fasting blood glucose level of 49 would be low–way too low. Did you mean 149? That would be diabetic. Or are you not in the US and measuring differently? I can’t say that I remember anyone here with such terrible hormone reactions from Byetta, but I know everyone is different. I’m sorry you are having such a difficult time.
toneylee in va,
thank you so much for responding! my most current fasting insulin was actually 60, not 49.(normal considered btwn 0-29.1) and remains consistently high during a timed test. my fasting glucose was 86(norm 65-99)however drops too low within 3 hours(hypoglycemia).
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Jerri: Thanks for the clarification and education! Ok, so that high insulin level strongly implies insulin resistance, right? And losing weight (the most recommended fix) did not work to decrease it at all? That’s difficult. You know, I don’t understand why the doctor removed the metformin when you started Byetta. They usually work so well together. I think the complexities are beyond me, so again, I’m glad you are seeing an endo, and I hope he/she is also a diabetes specialist. I know you don’t have diabetes, but I think it would be worth it because they understand diabetes meds best.
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As of June 1, 2008, the ability to post new comments at the Discussion Forums at Diabetes.Blog.com has been disabled. The old comments will remain available for you to read.
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Thanks.