Symlin 6: Jan/Feb06
Bill the diabetesdoc
wwq@diabetesmonitor.comDiabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at www.DiabetesMonitor.com.
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Bill and Steph Quick
Becca,
I am a retired engineer, Type 2, overweight, and diabetic for 25 years. I have been an AMLN stockholder for several years, and have spent a lot of time learning about diabetes, Symlin, and related things.
I started on Symlin on 27 June 2005, so I am ahead of most of this group on Symlin experience. Any statements I make are known facts or my own experiences - I do not give medical advice - other than occasionally to say " talk to your doc".
I receive no compensation from any person nor any company related to my diabetic/Symlin writing.
The Babe
(Comment this)
To Doctor Bill,
It is somewhat difficult to find the blog for the new month after you close the prior month. Please try to make the transition more "user friendly" - I believe we are losing some folks along the way.
The Babe
=== Reply ===
Babe: I've added one last comment at the earlier Forum, with a live link to this Forum.
All: If any other thoughts about smoothing the transition, please e-mail me at wwq@diabetesmonitor.com.
Hope this helps!
Bill the diabetesdoc
(Comment this)
Linda,
Symlin is new on the market. It is one of only 20 drugs approved by the FDA in 2005. Amylin (the manuf) had to build a sales force from scratch to "detail" all of the docs about Symlin (Detail means teach, give them starter kits, etc.) There are still many docs who have not been detailed.
Try www.Amylin.com and www.Symlin.com. for general info. You can call Amylin for the name of an endo in your area. I think the company is located in San Diego.
Every few weeks, I copy some prior "information" posts I wrote about Symlin and post them on this blog. I will do so again shortly.
The Babe
PS - Linda, Symlin is currently in clinical trials (AC-137) to be used for weight loss in non-diabetics. The interim results have been very good. This next generation, first-in-class drug may be just what you are lookingh for.
(Comment this)
Are you on a low-carb diet? There is a technical reason that could have something to do with your lack of energy. Ask if you are interested in the reason.
My "target" bg is 85. I start getting low bs "signals" in the 60s.
The "Dawn Phenomenon" causes many people to have high bg problems during the morning. I have to add 18 units of Humalog each morning just to offset it. Obviously the dose varies by individual.
The Babe
(Comment this)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)My blood sugars have been much better since I stopped taking insulin boluses with my meals. Still having way more lows than I'd like but I'm adjusting my basals. For instance, today I woke up at 78. Normally, I'd be ok at that number but I didn't feel comfortable taking my Symlin when I was below 100. I drank some juice, came up to 138 and then took my 10 units of Symlin and ate 30 grams of carbs. 2 hours post-meal, I was 61. I hadn't taken any bolus of insulin but I think my basals need to be lowered. We'll see what my doctor thinks tommorow. I haven't lost much weight on the Symlin-about 3 pounds. I don't have much to lose-I'd be happy losing 10 pounds and I've always lost weight really slowly. I think I would lose more if I wasn't having to drink so much juice. I'm seeing quite the decrease in my appetite-I'm normally a big snacker between meals and now I'm not hungry between meals.
So, all in all-I'm getting happier with the Symlin! Any advice on how to stop the lows would be appreciative! Also, have any of you not seen a big weight loss on Symlin?? Thanks!
Megan :) (Comment this)
I am on a pump and have been on symlin for 2 months. My food intake has decreased dramatically, but no weight loss. My upward creep has stopped though.
Have your dr. lower your basals, I usually bolus for my carbs after I eat but spread it out over a 2 hour period. I've been doing this for 2 days now and have not had any dramatic lows or highs after eating. You also might want to try eating the glucose tablets instead of juice. I find they get into my system faster and I'm not adding as many calories.
(Comment this)
Thanks for the tips-I will try the tablets instead of juice. I think I do need to bolus for my food. At lunch today I was 140. Took the 10 of Symlin and ate. Was 121 2 hours later but by dinner was 240. Maybe I can try bolusing for the carbs 2 hours later? I'll ask my doctor tomorrow. Thanks again.
(Comment this)
jill (Comment this)
I assume that I'll begin to experience the lows - especially since they've been a challenge my entire life - even without symlin. Three to five BS readings of below 50 a week is the norm for me. Here's a question - If the lows become more frequent for me with Symlin, would I stay with the same dose of symlin, but just keep decreasing my insulin dose? Or would I decrease the symlin instead?
Oh and Megan - Yes, I used an at-home a1c test once - and it was nearly spot on. Lab work showed 6.4. At home test showed 6.6. (Comment this)
I am type 1 diabetic 20yrs on the pump for 6 and on symlin for 2 months. When I first started, I had perfect blood sugars, felt full all the time and could hardly eat a meal. My total insulin went from 38 units of Humalog to 19. I lost 10 lbs with out even trying. I don't really want to loose any more. I felt like I had the miralcle drug. Now, I have been frustrated. It seems like my symlin is not working at all. I opened a new vial thinking maybe my old one went bad. I no longer feel full but more importantle it is not controlling my blood sugars/spikes like it did. I am so frustrated because I was doing so good and I don't want to quit. Has anyone had this happen. Does symlin make your bloodsugars change a bunch with your changing cycle. I have an 11 month old and beginning to quit nursing so I know my hormones are changing. Would love the help! You guys are so encouraging!
Megan-I agree with Deb. The glucose tabs get you up quick w/o the extra calories!
Alicia (Comment this)
Also, I am concerned about nausea. Does this just mean an upset stomach or does vomiting accompany the nausea?
Thanks so much.
Melinda
(Comment this)
I've only had one day of nausea after roughly a week on symlin - and it was incredibly mild. My DOctor (and actually the makers of symlin) have told me that the nausea doesn't last - it's just for the first couple of weeks while your body adjusts to this "new" hormone.
I'm sure you've looked into all sorts of different insurance programs, but it might be worth it to call around and check again to see if you can get insurance to cover your prescriptions. Even if it costs a little more for the monthly amount due, it might end up saving you money in the long run -- since you're on so many meds.
Our health care system needs a BIG overhaul, doesn't it?!?! It isn't fair that cost is what stops people from being on a drug - but it stops SO many people. Health care should be a "right" given to everyone, not a privelege for some.
Here's Another thought - the symlin "starter kit" that your doctor will give you includes a free sample vial of symlin so you could try it and see if it works for you at virtually no cost. If you like it, you may find it worth paying for. Good luck!
(Comment this)
Melinda,
I am on the full 20 U-100 unit dose of Symlin used for Type 2. A vial lasts me about 6 days.
In my case, the reduced use of insulin will not offset the cost of Symlin.
I agree with Stacie - try to get a starter kit.
My nausea was about a minute a day for 4 days and I never came close to vomiting. It was just a minor cramping very low in my abdomen - I considered it insignificant. Do NOT equate nausea with the "feeling of fullness" - that is supposed to happen and will reduce your food intake.
The Babe
(Comment this)
Alicia,
It seemed to me that the Symlin was "stronger" during the first 2 months while my body was getting used to it. I had the same general problem with weight loss, etc. after that ... and yes, I am now at 7 months and I am frustrated.
Since I'm a guy I can't "talk to" the cycle changes & hormones - sorry 'bout that.
The Babe
(Comment this)
Stacie,
For me, getting down into the 50s several times a week would be very scary. Please be careful! I hit the sixties a couple of times a month and that is all I want to deal with.
A note on glucose tabs. They are my first response - I keep a test kit in the bathroom and a tube of glucose tabs right next to it for night time events. And I always carry tabs with me during the day.
Occasionally I will have a "low" that is really bad (such as a dosing error). When that happens, I get a huge "appetite" that can't be handled by the tabs. I give in to that and eat high calorie, high carb food until the appetite diminishes ... and yes, my bs goes crazy for a few hours.
The Babe
(Comment this)
Ruth,
How do you evolve from a Type 2 starting 16 years ago to a Type 1 starting 4 years ago? I am really interested - actually intrigued - by that concept.
As y'all may know, Dr. Bill is a nationally known endo who has been involved in beaucoup research on diabetes. I would like to hear his comments after Ruth talks about her situation.
And Ruth, please don't feel like I am picking on you. I find this very interesting!!
The Babe
(Comment this)
THIS IS A RE-POST
Hi Deb,
I always inject in my right thigh. I have done so for many years with insulin and continue to do so with Symlin. I estimate that I have injected there over 20,000 times, so the scar tissue has built up to the point that I usually do not feel the injection.
I occasionaly get some bruising and sometimes bend a needle - I get rid of the bruising by doing a better job of moving the injection location around. I also have some trouble with the thickness of the rubber top on Symlin vials. Today''s small, very thin needles just don''t work well with that thick rubber.
I heard that Symlin now uses a thinner rubber top on the vial, but have not noticed it on my vials.
Using longer, thicker needles might reduce the bruising.
The Babe
(Comment this)
I do agree that it isn't safe to drop below 50 - ever, but I'm one of those people who cringes at the sight of a high and is relieved when I see that it's low. I know that's not a great mindset, but for so many years, I really preferred to have a low rather than a high. I've talked with my doctor about this quite a bit lately and we're addressing it. Oddly enough, the symlin has actually not resulted in one low. I think the extra attention I'm paying to how much and when I'm eating is actually keeping the lows at bay. The symlin really has kept me from swinging from low to high and back again - I finally feel "normal." My body (and mind) feel "comfortable" now throughout the day -- It's a very noticeable change. I didn't realize what a significant physical effect the lows and highs were having on my system.
By the way, do all type 1's get up to a symlin dose of 10 - or do some stop at 5 or 7 units?? Is "10" the magic number that we're all supposed to stick with? (*I read above that a type 1 was raised to 15 units...)
(Comment this)
THIS IS A RE-POST
Jill,
My experience is that morning bs will rise related to the time you get up, not when you eat - this is the "Dawn Phenomenon" at work. It is caused by your liver adding "stored" sugar to your blood. I think it is independent of when - or if - you eat breakfast. (Think back to the early days of man - get up in the morning and find something to eat ... or maybe not).
I find that my morning "get up" blood sugar has a lot to do with what I ate the day before - heavy dinner -vs- light dinner, evening snacks or not, etc. A very heavy lunch (like Thanksgiving) even seems to make a difference.
When I was taking my "lab" approach to Symlin during the first 3 months, I sometimes felt that I was trying to learn "too much". (One day I did 23 blood tests!!) I now test - take Symlin - eat - wait a while - take Humalog. Since I do not take Humalog between meals, there isn''t much I can do to change my bs between meals anyway.
I am now at 3 - 4 blood tests a day. My left ring finger, where I do all of my tests, can handle this ok. It sure did not like 23 a day!!!
The Babe
(Comment this)
and yes babe, i know, symlin does not lower blood sugars. however, i still believe there is some kind of interaction between these, as i experience at lunchtime, i give my symlin injection, wait an hour, and most times my blood sugar is lower (approx 10 mg) prior to the symlin injection with no insulin given. has anyone else experienced that? i see it alot. then as my blood sugar appears to be rising (about an hour and a half) i will inject my insulin. all seems to maintain well. but if anyone can explain the decrease of blood sugar in that first hour i would really appreciate it. i plan to call amylin and talk with their "experts" and see what they can offer.
jill (Comment this)
Ruth,
I want to emphasize what Becca said. Symlin is supposed to be taken with each meal that has 300 calories or 30 grams of carbs!! (The fact that some folks on this blog are having success with skipping evening meals is an exception I have not heard of before).
According to your definition, I am Type 1, but I am using T2 dosing, which is 20 units per meal (3 - 4 per day).
If this doc of yours does not like Symlin and is giving you dosing that is a lot lower that normal, I would call Amylin to discuss - the clinical trials to determine dosing are done for a darn' good reason!
The Babe
(Comment this)
I experience the same thing as you-dropping after Symlin but before insulin is taken. For example, at lunch today I was 200 (I'm still trying to figure out my prelunch basals). I didn't give any insulin. Injected my 10 units of Symlin and ate 30 grams of carbs. 1 hour later, I was 104. 2 hours later I was 114 and I was 140 before dinner! How does that make any sense?! If Symlin doesn't lower blood sugars yet I didn't take any insulin, what caused my blood sugar to lower? This happens every time I take Symlin. I always 25-100 points lower. I've now learned that I can't take Symlin unless my blood sugar is over 100 or else I go low after eating.
On another subject, how do you all deal with exercise, blood sugars and Symlin? I haven't been exercising as normal since starting Symlin because I've been having numbers in the 30's and 40's. I finally have that under control and am staring my yoga class this week. Do you reccomend taking it in the morning or at night? Before or after Symlin/eating?? Help!! :) (Comment this)
Sarah (Comment this)
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(Comment this)oh well, about exercise. i too have been putting that somewhat aside til i could get this stabilized. this month has been my best, so i am planning on starting my exercise program on monday. my plan is to start in the morning, try taking the symlin, eat breakfast, exercise for 45 minutes, test my blood sugar, and hopefully take my insulin. i've tried this a couple times the beginning go this month and it seemed to work okay. will let you know.
when i called amylin i questioned my program of only taking symlin at breakfast and lunch. she stated that they want us to follow whatever our physician tells us to do. she did repeat the general recommendation of anytime you eat 250 calories or 30 carbs, however, that is not carved into stone, and should follow your doctors recommendations. since i am the only patient my doctor has on this, he's following what i'm doing. so far, all my decisions have been on a daily watch as i take this. megan, i have found even if my blood sugar in below 100, in an hour and a half my sugar starts to rise. yes, it will drop, but i keep a cautious watch on it, and if it appears to drop too low, i eat a glucose tablet. the glucose tablet appears to work pretty immediate, and pulls me out of the dangerous zone. don't know if you are interested in trying that, but until i can figure this out, i really want to take symlin at least twice a day. hope some of this is useful.
jill (Comment this)
To all,
The following is some misc info that each of you should keep in mind:
!!!!! No medicine works for everyone !!!!!
On this blog we have seen some people using Symlin unsuccessfully who have successfully switched to Byetta. (That is a diagnosis error by the doc).
We have seen some people who did not get enough info from their doc. (Keep in mind that the docs are learning about this "new generation drug" just as we are).
We have seen some people who did not take Symlin seriously (It is not an "easy" med to use).
We have seen some people ("bashers")who are trying to affect the stock price of AMLN.
And, yes, we have seen some people who just CANNOT use Symlin successfully.
If you look up the prescription fill rate for Symlin, you realize that it is being VERY WELL RECEIVED. Even the few people who post problems on this blog usually seem to get their personal Symlin program "worked out".
And if Symlin just will not work for you, realize that it was worth trying. This is a damn' nasty disease we have, and all of us should realize that we can - and should - spend the rest of our life trying to live a high quality life style - while continually try to beat this thing!!!
The Babe
(Comment this)
THIS IS A RE-POST
The Symlin "hot-line" is (800) 349-8919.
RML,
1A) I tried to use just Lantus (evening) and Symlin (meals) and could not make it work.
1B) The "dawn phenomenon" requires me to add a substantial amount of "short insulin" at my first meal of the day.
1C) Lantus only works for me for about 21 hours. Accordingly, if I normally take Lantus at bedtime, I need some extra "short insulin" with my evening meal.
2) I never vary my Symlin dose. I find that is much easier to fix the dose of one med and just have to learn how to vary the other.
3) There are some people who have switched to R from Humalog and find the slower action works better for them.
The Babe
(Comment this)
THIS IS A RE-POST
Bob,
My T2 starting dose was 10 U-100 units per meal. I used it for about a week.
My current T2 full dose is 20 U-100 units. I have been on that - since the start of the second week - for the last 7 months.
My blood sugars were weird until I got stabilized at the full dose of Symlin.
I refuse to talk in terms of units other than U-100 ... it is too easy to make a dosing mistake. I really believe that Amylin screwed up using two different sets of units. (Syringes are based on U-100 units).
I divide my food into 4 meals a day at about 4 hour intervals. That seems to work best for Symlin and Humalog.
I wait at least 1 1/2 hours after my last Humalog to take my evening Lantus.
The Babe
(Comment this)
I am on an insulin pump. My doctor and I have adjusted my basal rates so they are lower 1 hour after eating/Symlin and then higher 2 hours laters. I take Symlin 3x a day 99% of the time. If I'm lower than 100 at a meal time, I will drink 4oz of fat-free milk.That will normally bring me up to over 100 and I will then take Symlin and eat. I have found that I need no insulin for breakfast-just Symlin. I need to take insulin for 1/2 my carbs 1 hour after lunch and it seems like I need to take insulin for all my carbs 1 hour after dinner as I'm going high 3-4 hour post-dinner. I haven't had nearly as many lows since I've stopped bolusing for my carbs right as I eat.
The only time I don't take Symlin 3x a day is if my work schedule is way off (normally only happens 1-2x a month). For example on Tuesday, I took my Symlin at 0830 and ate breakfast. I was on call for work and got called out. Was unable to stop and eat a full lunch. Ate 1 granola bar (15 grams of carbs) at about 1 p.m. Took my symlin and ate dinner at 8pm. Was up all night and ate 15 grams of carbs at 0200. Got home at 9am and had my Symlin and ate breakfast. Went to sleep until 4pm. I had my dinner time Symlin and dinner at 7pm. I didn't go high during that but was low once. Like I said, my work schedule is only like that 1-2x a month and other than that I take the Symlin 3x a day.
I still find it very odd that the Symlin does drop me so much 1 hour after all meals. I was 116 yesterday at breakfast, took the Symlin and ate 30 grams of carbs. My blood sugar 1 hour later was 75 and 2 hours later was 114. I always have that initial drop. (Comment this)
babe: i have not concluded that this isn't working, as i've said, i've had my best A1C since diagnosed, and i continue losing weight, just don't understand why the low's after the first hour and so far no one can really define it. i am going to see an endo feb 13, and hoping maybe he has more info than my internal med doc.
megan, let me know if you found anything out. thanks
jill (Comment this)
THIS IS A RE-POST
Study results from 6-30-05
Amylin Pharmaceuticals, Inc., (AMLN) presented detailed data from a 16-week phase II obesity study (AC-137) of Symlin (pramlintide) at the European Congress on Obesity (ECO) in Athens, Greece.
Pramlintide is a synthetic analog of human amylin, a hormone known to play a role in the regulation of appetite and food intake. The study showed statistically significant, progressive weight loss of 3.6% (3.5 kilograms) compared to placebo, with no evidence of a plateau in effect at 16 weeks. The weight loss was accompanied by a significant, progressive reduction in waist circumference, a recognized marker of abdominal obesity and cardiovascular risk.
This blinded, placebo-controlled study included 204 obese subjects, 160 without diabetes and 44 with non-insulin-treated type 2 diabetes. Study participants received pramlintide or placebo three times a day before meals for 16 weeks and were asked to maintain their usual diet and exercise routines.
Subjects in this study were able to tolerate higher doses of pramlintide than those previously evaluated in long-term diabetes studies, with approximately 90% progressing to 240 micrograms three times a day.
Subgroup analyses indicated that body weight reduction with pramlintide versus placebo was most pronounced in subjects with obesity class I (BMI of 30 to 35 kg/m2), who experienced an average weight loss of approximately 5% at 16 weeks. Pramlintide was generally well tolerated.
The most common adverse event for pramlintide compared to placebo was mild, transient nausea, experienced by a minority of subjects. Weight loss in subjects who did not experience nausea was similar to that seen in those who did experience nausea.
"It is clear that islet hormones can have important effects on satiety and food intake," said Jeffrey Friedman, MD, PhD, professor, Rockefeller University and investigator, Howard Hughes Medical Institute.
Amylin submitted an Investigational New Drug application (IND) to the U.S. Food and Drug Administration for the pramlintide obesity program earlier this year. The company has recently begun enrolling a 16-week phase II dose-ranging study in approximately 400 obese, non-diabetic subjects.
This placebo-controlled study will evaluate three doses ranging up to 360 micrograms with twice and three times a day dosing regimens. In addition to receiving either pramlintide or placebo, all subjects will participate in a lifestyle intervention program. Data from this study is expected to be available in the first half of 2006.
The Babe
(Comment this)
I have reduced the level of quick acting insulin by 70% count carbs more effectively and have had no Blood Glucose above 7.2 mmol/L.
If anyone gets the chance get onto a DAFNE course! (Comment this)
jill (Comment this)
jill (Comment this)
Jill,
This is the first I have heard of a DAFNE course, and I am not familiar with the unit mmol/L.
Andrew, please help us out.
The Babe
(Comment this)
sarah (Comment this)
Sarah,
I have run into the same thing with pizza - apparently Symlin really delays entry into the stomach.
Let us know what you bs are tomorrow - that is when I usually pay the price for eating pizza.
The Babe
PS - Are you only eating one meal a day?
(Comment this)