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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wwq@diabetesmonitor.com
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Please review and follow our ground rules (at http://diabetes.blog.com/690512/). To share your thoughts, use the "Comments" link immediately below.Bill the diabetesdoc
wwq@diabetesmonitor.com
Diabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at www.DiabetesMonitor.com
I have had stomach pain and bowel issues since I have been on Symlin. It has subsided a lot but I still do notice at times. Call the Symlin help line and they may be able to help you or give you some direction to talk to your physician.
I could use some help. Starting on Friday (5 days after an increase in dosage from 4-5 units) I have been having some real lows (38 was the lowest). The first time was Friday evening. My bg was 103, I did my shot and was eating dinner. Started to feel funny so I checked again not having even left the table and it was 50. I had not yet done my pump bolus either. The same type of thing happened Sat and Sunday too. Now, the nausea is back and a headache that won't stop. I have made two calls to my physician and not heard back. The folks in the group seem to be more knowledgeable at times any way. Any guidance and insight would be appreciated. I was so encouraged last week because my highest bg had been 160 and most of them around 100. (Comment this)
I have been using symlin since mid-January 2006 and I just ran a half marathon! The main thing I have noticed about symlin and exercise is that the two really don't have a whole lot of impact on one another! I was really worried about that. I run 3-6 times a week and log around 25 miles a week, so it is a big deal to me! Anyhow, I have made ONE change. If I exercise for longer than one hour intensely, I will not take symlin for a six hour window, even if I eat a meal. The reason is I had some pretty nasty lows taking symlin after these strenuous runs, and Ive learned that my body is already very sensitive to insulin in these hours after the runs and the symlin just isn't necessary. Plus the lows I experienced were pretty rough! I do want to stress though that this only happened when I ran upwards of 8 miles!
A little about me, I am a 27 yo T1 diabetic of 14 years, on a pump for ten years. Ive been on symlin 3 to 4 times a day, 10 u since january 2006. I have no complications from my diabetes. My last a1c was 6.2. I am 5'7, 164lbs. (Comment this)
Did you lower your basal rates? Insulin is still coming into your body. Take into account the type of insulin you are using and when the peak is and how long the duration is. Keep a Log, if you see a pattern, try lowering the basal about an hour before the meal. Headaches are common when the sugar goes too low. You might want to back down on the Symlin for awhile and then bring it up very slowly. (Comment this)
Laura,
We have had very little info on this board related to children using Symlin.
AMLN just announced a clinical trial based on Symlin for children with Type 1 diabetes. This is the first study of this type.
My experience says that your doc is treating your son "off-label" which means that the doc is aggressively trying to help your son ... you should be pleased with the doc. Some docs will not even treat ADULTS "on-label" until a product (such as Symlin or Byetta) has been on the market "on-label" for at least a year.
The Babe
(Comment this)
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Sounds like your Doc. may have cut your insulin down too much. Try raising it little by little until you find a good working dosage. My numbers were all over the place, so my Doc. didn't cut my insulin at all when I started symlin (although he did give me leave to lower the dosage if needed) and now the numbers have settled down (as long as I remember to bolus after meals). (Comment this)
I already raised my insulin back to my original amounts - 17 units at breakfast and 20 units at supper. My fasting blood sugar this a.m. was 189 so I took the 18 units of insulin and 20 units of Symlin that was my usual dosage. I ate half a bagel with peanut butter and had coffee. I didn't eat anything else until 5:00 in the afternoon because my noon bs was 203. I was wondering if there is a window of time before Symlin begins to kick in or should I call my doctor on Monday. Would Byetta be better for me? (Comment this)
I'm not sure what to tell you since you are a T2 and I'm a T1 whose body doesn't react to any meds like it is supposed to. Symlin takes some work and adjustments, both in time, meds and food. The types of carbs you eat and your activity level throughout the day also play a great deal in how you are reacting. I suggest reading back through the past postings, there is a wealth of info. there. And yes, I would call the Doc. but don't be suprised if he/she doesn't have any solutions, some of them have less info. than we do here. You might be a better candidate for Byetta, we have had a few who did better there.
Everyone else, it has been suggested that we put our info. in at the bottom of each post. I found that I could type it in the Name section of the comment box, that way you don't have to retype it everytime. (Comment this)
Deb's suggestion of reading past posts is a good one. Here is a some start-up info based on my experience and research:
Symlin is the synthetic version of the natural hormone amylin. If you are diabetic, studies have shown that your body does not make enough amylin or insulin (they both come from the beta cells in the pancreas).
Symlin is not an easy drug to get used to. It takes time and some serious effort to get things working right.
Consider this for each meal: Prepare your food, test your bs, inject Symlin ... eat ... finish eating within 10 minutes of injecting Symlin, wait 15 minutes then inject your fast insulin.
The "key" to this whole thing is getting your insulin regulated. Symlin does not cause low bs, but insulin normally has to be reduced when using Symlin.
Some people get some nausea during the Symlin startup period.
Symlin is mainly for bs control. The way Symlin causes the weight loss "side effect" is by creating a "feeling of fullness" 10 - 45 minutes after it is injected. (This happened to me the first time I injected Symlin).
Like any other drug, there are some people who just can't use Symlin. However, most people who put in the time and effort are pleased with the results of Symlin.
The Babe
PS - Symlin is mainly for T-1, also T-2 who have been on insulin a long time. Byetta is officially for T-2 who can't control their bs with pills; however, it is being used more widely by some doctors.
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i also have blood sugars all over the place at first. It seemed to work it's self out after about 8 days, but the i started my period and it feels like i'm starting all over again! My dr. wants to raise my basals a few days before i start. With symlin i feel like it's a lot of trail and error!
Do you have any suggestions about vacation and the pump. We go to the outer banks, it gets really hot, i'm in and out of the ocean and pool for about 10 days, and i'm kinda nervous about site issues, heat, and swimming. Any suggestions. Thanks (Comment this)
I haven't been on Symlin for long at all so may not be much help, but I have sometimes had problems with high BS's after breakfast when I was just on the pump even though I eat the same thing every day (Cheerios, OJ, yogurt). I would be 120 at breakfast, eat my normal meal, give normal bolus and then be 330 2 hours later. Do you get up at the same time and eat at the same time? I have tended to get high on the weekends when I eat maybe 1 or 2 hours later than usual. Haven't had the "bad insulin" problem for a while though. That's the best I can do...maybe someone else can be of more help! (Comment this)
Update on Symlin pens:
At the stockholder's conference call on Wednesday, Ginger Graham - president of AMLN, announced that the NDA (new drug application) for Symlin dispensed in pens will go to FDA in a few weeks. She did not mention how long approval might take.
Based on previous comments, it seems that the Symlin pens will start arriving in pharmacies late this year or early next year.
The Babe
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How old was the bottle of Symlin you were using? I've read that some people have had reduced effectiveness (in other words, worse results than preSymlin) when the bottle got close to the 30 day limit. Also, make sure that the symlin and insulin have not been accidentally exposed to increased heat (such as left in a car for an hour or more). Those are 2 things that I've heard about that can cause the BS's to go wacky. (Comment this)
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One of the factors that has not really been discussed on this blog is "delayed gastric emptying" due to Symlin.
It stands to reason that if food moves more slowly through you system, your bs will not "bounce" as high.
The thing that I have noticed, and cannot explain how to deal with it, is that my insulin dosages have changed from my pre-Symlin days (I am not talking about my reduced insulin requirements - it seems to be more of a timing issue). I think this is one of the issues that makes starting Symlin somewhat difficult.
The Babe
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Regarding how old my bottle of Symlin and how fresh it was, very good question and point. My endo didn't say anything about that and I didn't think of it. One thing I always wonder about is, how long has each bottle of Symlin I get been sitting on the shelf since it was bottled. I do understand that they keep a very strict watch on the shelf life and inventory of these RX's, but there is always human error. I never use a bottle past 28 days, but I do take my bottle w/me to work and I do not trust putting it in the fridge at work. I think during the summer, I will get a little cold thermos to keep it in or something. These are very probably causes of my problems though! (Comment this)
When I started on Symlin my bs "got good" and I lost weight really fast. Two things happened within about 6 weeks. 1) I switched from low-carb to a balanced diet. 2) Several knowledgeable people advised me to slow the weight loss, which I did.
After about 6 weeks the weight loss stopped. That was about 8 months ago. I have not been able to get it going again. Very frustrating.
The Babe
(Comment this)
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(Comment this)As long as the seal has not be broken, the bottles are supposed to be good for 28 days after you start using the bottle. If it happens again, I would call the Symlin people, The Babe has posted their number somewhere in the archives. I get mine in 3 month increments and have had no problems with any of it. I keep it in the refrigerator until I open it and then keep it in a padded case that goes everywhere with me. Also, remember that diabetes is not easy, sometimes our bodies just go a bit wacky! (Comment this)
Jackie,
In June 2005 I went to see my endo with a handful of data and said "I want to go on Symlin" ... he stated "I like to wait a year on a new drug" ... I said "I am 64 years old and I don't have a lot of time to wait. If Symlin doesn't work out, I will let you know right away".
I am sure he read between the lines - correctly - that, if he didn't write the scrip, I would go to another doc.
I have been on Symlin over 10 months and am very pleased with it. Yes it improves your bs, and yes it helps with weight loss, but there is more to it ... such as more energy and a "feeling of well-being". Some of this stuff happens over time ... but it happens.
And if you are one of the very few people who don't seem to be able to tolerate Symlin, you will know in a few weeks. Then you can go back meekly and say "it was worth a try".
When I was a kid, docs were God-like. Most people, including me, have now come to realize that the final responsibility for our health is wih us, not the doc.
The Babe
PS - Research has shown that, if you are deficient in insulin, you are deficient in amylin. It only makes sense ... both of these hormones are made in the beta cell of the pancreas.
(Comment this)
Barbara, RN in Alaska, T1 for 43 yrs. (Comment this)
everyone: problem is back. i inject symlin before a meal, eat my lunch and my blood sugar starts to bottom out before it starts to rise. i thought i had successfully stopped this by reducing my lantus in the a.m. appears my body has readjusted and probably need to drop the lantus some more. just sharing this wondering if the people who also were having this problem previously has noticed a reoccurence???? i really like symlin, when it works, it works very very well...just seems like my body is constantly changing. how's everyone else doing???
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I have this problem sometimes at dinner time. I won't take symlin right away with a meal if my blood sugar is under 100. If I am under 100 then I start eating and midway through the meal, or right after, depending on how low my blood sugar is, Ill take my symlin. I then wait 45 minutes to bolus for my meal, and I do a dual wave 30% normal/70% square duration 1 hour. This has cut out any of those weird lows that rebound into wild highs. Hopefully this helps you in any way? This only happens at dinner time, and it is most severe during the week of my period.
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I am having to realize that I do better when I eat lightly all the time. This sounds like a "duh", but food has been a huge problem for me, all my life. For the first time, using Symlin, I know what it is like to not be hungry.
I also wonder what part the liver's glycogen stores have to do with the PP blood sugar excursion. Are there times when this store is more depleted? I need to do more research.
The other comment is: has anyone tried the new insulin Apidra? It has an indication for dosing up to 20 min PP and is pump compatible. I asked my Endo, and she didn't want me to make too many changes at one time.
Barbara (Comment this)
I personally have never had any problems injecting symlin mid-meal. I have the same feeling of fullness at the end of the meal when I inject mid-meal as well. It was actually my doctor's recommendation to try doing it that way for my evening meals and it has worked wonderfully. Everyone is different though and I definitely recommend talking to your doctor before trying anything.
Barbara,
I know that glycogen stores in your liver and muscles are lower after intense exercise. Also, after long periods without eating. Isn't the glycogen in your liver used by your body to provide inbetween glucose to keep you going between meals? I know that that definition is oversimplified...but I think it gets the basic point across. I know that after my very long runs, (runs lasting over an hour or farther than 8 miles) I have lower than normal blood sugars for the next 24 hours....sometimes even extending into the next 48 hours. My doctor has explained to me that one of the reasons for this is that your body has less ability to correct lower blood sugars due to lower glycogen stores after intense exercise.....It just means I pay extra attention to my sugars and respond that much faster to feeling low..... (Comment this)
Here is a thought for the people new to Symlin.
Your natural hormone amylin has probably been missing, or at least reduced, for a long time.
Now that you have started Symlin, it takes awhile for your body to get used to it again.
When I started Symlin in June 2006, the "feeling of fullness" was very strong. Now I hardly notice it. If I finish eating and still feel hungry, I stop and say to myself "what is the reason?". Invariably the reason is that I forgot to take Symlin before I started eating.
Eventually Symlin fades into the background like most of the rest of your body chemistry & functions (how long has it been since you noticed you are still breathing?). At about the same time it started "fading" I found my energy level to be better and the "feeling of well-being" you may have heard about to be "up and running".
Be patient.
The Babe
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I, too, see how the reintroduction of a missing hormone will take some bodily adjustment. What I was wondering is does that "feeling of fullness", even though it fades into the background, still remain in terms of helping to keep the hungries at bay? I am experiencing the "feeling of fullness" more like a feeling of disinterest in eating. This is a positive for me, as I need to drop some weight. I would be very happy if this "feeling" continues, even if it becomes more like a usual state. I am at 5 units (30 mcg) but am ready to go up to 7.5. My weight is down 1.5 lbs in a week. (Comment this)
Barbara,
I would say that a transition from a "feeling of fullness" to a "disinterest in eating" is an apt description.
I do run into a timing problem. Symlin starts "wearing off" at about three hours. Because of the Humalog, I always wait at least four hours to eat/inject again. If I am sitting in a restaurant during that fourth hour, I over order, and then overeat ... not good. (Comment this)
It takes some time to get adjusted to symlin. Are you having any "nausea"? Is your plan to titrate up to 20 units? Just wondering; have not seen anyone start with 10 units...hang in there!
I am at 10 units now with mixed results. The only real constant for me is not being hungry. I am currently doing a CGMS study--and it has been frustrating. Seems like I'm eating less and taking more insulin: probably stress related. Will check my weight at work tomorrow. (Comment this)
courtney (Comment this)
I started at 10 units, after 7 days went to 20 units. It worked good for me. (Comment this)