September 15, 2005

Symlin 2: Sep/Oct05

[Note: As of October 15, the active Symlin forum has moved to another location (http://diabetes.blog.com/361953/) at Diabetes.Blog.com, and this post is no longer accepting comments. However, the comments that were made during the earlier Symlin Discussion Forum are retained below for the reader's edification.

Bill the diabetesdoc]

This is the 11th in a series of discussion forums at Diabetes.Blog.Com, and is the mid-September/mid-October forum for discussions about Symlin.


This Symlin forum was activated to allow comments on September 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.

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

At the Diabetes Monitor today: Two weeks after Katrina.





Posted by Bill the diabetesdoc at 00:00:00 | Permanent Link | Comments (98) |
Comments
1 2
1 - I have been type I for almost 40 years and have been using the Cozmo pump for 3 1/2 years. My A1C in August was 7.9 (usually in the 8's). I started Symlin (after a suggestion from my endo and reading this blog) on September 3rd. I started with the 2.5 unit dose-no nausea but bs were not good. Quickly went to 5 units-again no nausea and did not feel like I had lost my appetite. After my first full week I had lost 10 pounds but still feeling hungry and my bs still were not good. Week 2 I went to 7.5 units with same results-I too am experienceing the spikes (250-380) about 2-3 hours after my meal. Last night I started the suggested maximum dose of 10 units. My mealtime bolus is at 50% (for me a 1:20 ratio)and I increased my basal rate from the git. My blood sugars are still high and all over the chart. Obviously I still need some fine tuning and plan to hang in there as I am very pleased with the weight loss. I've enjoyed the blog and gleaned a lot of useful information. Thanks (Comment this)

Written by: Sunny at 2005/09/15 - 18:47:20
2 - After losing about 20 lbs., my weight is now going up on Symlin. Also, other than at breakfast, I no longer feel the fullness and urpiness I was used to with Symlin. I am sooooooo hungry at night, even after using 20 units. I am trying to be more vigilant about waiting 15-30 minutes after injecting before starting to eat, since my endo believes this maximizes the effect of Symlin (he ran trials and knows Symlin well), but I am not seeing a difference. The "magic" is gone. I was hoping to be free from the drive to eat indefinately. Last night I tried injecting and extra 10 units at about 8:00 pm. Tonight I am going to try injecting 25 units with dinner and stick with 20 at breakfast and lunch. There is a school of thought that using over 60 units per day will eventually cause insurance companies to stop coverage, but I have some extra Symlin to experiment with now. My endo mentioned that in the current weight loss trials, non-diabetics are using large doses of Symlin. Some are only shooting up at night. Anyone out there on variable dosing? (Comment this)

Written by: leslie at 2005/09/15 - 20:36:37
3 - Some messages from our sponsor:

(1) Please spend a few minutes at the Diabetes Monitor website (CLICK HERE) and read more about diabetes.

(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(3) Finally, if you like to answer polls, there are lots more at the Diabetes Monitor, at Polls.

Many thanks, from Steph & Bill Quick

 

 (Comment this)

Written by: Steph & Bill Quick at 2005/09/15 - 20:40:02
4 - Jessica, I am on 10 units of symlin. My diabetic educator said 10 units were the highest for type 1.
Babe i will keep walking but havent for past 2 days cause of rain but today i did go on stepmaster but not long. I will start walking when the rain stops. (Comment this)

Written by: Alicia at 2005/09/15 - 21:36:26
5 - Diabetes docbill. Did you post the spreadsheet that babe sent yeah.? I didnt know if i missed it.?? (Comment this)

Written by: Alicia at 2005/09/15 - 21:40:38
6 - Alicia:
No, you didn't miss it... It's now posted at the Diabetes Monitor website:
CLICK HERE

What you'll find:
Some comments from The Babe.
An Excel and a zipped version.

Please download, then make a copy and use the copy. Otherwise, if you fool around too much, you'll have to re-download the document!


[The spreadsheet now has a Discussion Forum of its own, at The Kelly Model. The Babe will be commenting on it, and answering questions, at that Forum... Bill the diabetesdoc]
 (Comment this)

Written by: Bill the diabetesdoc at 2005/09/16 - 15:53:26
7 - Babe, thanks alot! (Comment this)

Written by: Alicia at 2005/09/16 - 17:12:02
8 - I am a type 1 on symlin for 3 weeks now. The following is a summary of my experience so far:

- BG level post meal almost always less than 140 now.
- Sometimes post meal goes low, but I'm still adjusting the sliding scale (before symlin, I was 1 unit to 12 grams of carbs - now, I'm at 1 unit to 24 grams) - using humalog.
- I have an apt with the endo in 1 week and I'm going to ask to switch from humalog to regular insulin pre-meals because I think that would even out the post meal and pre-next meal low/high pattern.
- I increased my nightly lantus from 18 to 24 now that I'm on symlin.
- The past 2 weeks, I've mixed the humalog and symlin in the same syringe and noticed no change in either drugs effect compared to when they were admistered separately.
- BG level pre-lunch is high sometimes
- Feel stronger and not as tired as before symlin.
- First week, I had very full feeling, not really nausia, after each meal. Now, I just have a satiated feeling after meals.
- In order to decrease the number of post-meal lows, I check BG before each meal and if it is below 130, I eat enough quick acting carbs to get it to 130 before taking any shots. I assume that once I change to regular insulin, this will not have to be done.

Overall, I'm very pleased because the post meal highs are definitely gone.

Eric (Comment this)

Written by: Eric Feibelman at 2005/09/17 - 12:35:10
9 -
"THE KELLY MODEL"

Dr. Bill:

I just saw your post that includes the Kelly Model of the spreadsheet. I prefer to respond to questions in this blog so that all can "hear" the answer.

I will generally discuss the Kelly Model over the next few days, then start answering questions as they arise.

Thanks,

The Babe

[The spreadsheet now has a Discussion Forum of its own, at The Kelly Model. Bill the diabetesdoc] (Comment this)

Written by: BioBabe at 2005/09/17 - 18:06:28
10 -
Sunny,

I wish that I had some experience that I could pass on to you, but I am a 25 year T2 and, apparently, the numbers and experiences are different ... so I will just preach for a bit.

I started at 1/2 dose of 10 U-100 units and got a feeling of fullness within an hour. A week later I went to the full normal dose for T2 of 20 units and the feeling of fullness was still there.

Please keep in mind that the primary purpose of Symlin is glucose control - which is a "long term" thing - as in "I want to see my grandkids graduate". Don't get too hung up on the "today" thing of losing weight as a side effect of Symlin - if you stay with Symlin, the weight will go away. Work toward a balanced diet. Exercise - you will have more energy being on Symlin. Consider dumping caffeine. Symlin provides the foundation for us old-time diabetics to achieve a healthy life - don't pass-by this opportunity!

At some point, I hope that you will get everything "flying in formation". It took me several weeks to achieve, but I have it now and it feels great!

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/17 - 19:34:10
11 -
Leslie,

I started Symlin on a low carb diet - lost a lot of weight initially - then switched to a balanced diet - and my weight went UP!! - then started back down again. This is normal - if interested, ask and I will explain why it happens.

For technical reasons (ask!), Symlin starts to lose it's effect on appetite about 3 hours after injecting. At one time I was injecting 20 units 5 times a day - every 4 hours - to deal with this. I am currently at 4 times a day. I *always* inject *exactly* 20 units just before eating. I tried the 15 minute time lag, it did not work for me.

Like you, I want to eat more later in the day - I am currently adjusting my diet to "work with" that rather than fighting it.

In the current AC-137 trials for weight loss in non-diabetics, the Symlin dosages are much higher than 20 per meal and getting good results.

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/17 - 19:51:05
12 -
Eric,

To really optimize my glucose control, I find it best to take Symlin before I eat and Humalog (fast acting) after I eat. That way I can adjust my Humalog "index/sliding scale" for delays in food delivery, more or less food, etc.
(i. e. - no mixing needed)

For quick acting carbs, I always keep glucose tabs "within reach". I have found that one of them will raise my glucose 5 - 15 points in an hour and then go right back to "no affect" at 2 hours. Since they are only 15 calories apiece they have little effect on my diet.

My goal - unattained other than a couple of days at a time so far - is to get my 90 - 120 day glucose average to 105 or less. That is equal to an A1c of 5.5, which is the top of the range for non-diabetics. To try to reach this goal, I aim to have my glucose at 85 just prior to every meal - I then inject Symlin, eat, and then inject Humalog. The first few times I tried this I was kind of scared of "lows", but it works ok for me.

I feel like a kid with a new toy each time the meter shows 83 - 87 just prior to meal time! It only happens maybe one time in 8 or 10. Of course, once in a while it goes low - and I use one or more glucose tabs to compensate.

It sound like you are doing very well - keep it up!!

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/17 - 20:15:47
13 -
To all,

When reading the above stuff that I wrote, it sounds like I am a machine dealing with this diabetes stuff with no mistakes. Trust me - it just ain't so!! I probably make more mistakes than any three of you put together.

One thing I have learned - if you screwup something, fix it as best you can and then move ahead. DON'T DWELL ON MISTAKES!! - just try to learn from them going forward.

Another thing - and I will approach this mathematically - you can only solve for unknowns ONE AT A TIME. Glucose control is hugely complex - exercise, slow insulin, long insulin, sleep pattern, glucophage, aymlin, calories eaten, what you ate the day before, etc, etc, etc - there is just no simple way to do it. Experience is your best teacher. Remember, you are going to live with this for a life time - get used to it, do the best you can, and don't get stressed out over it - which also affects your blood sugars!!

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/17 - 21:41:10
14 - I was on Symlin for a month.(July 3-Aug. 2) I am a type 1, on a pump, and my latest a1c was 8.5(May) It hasn't been that bad in quite awhile- usually its mid 7's.. You can call it lazyness/whatever, getting lax on the diabetes care. I started out at 2.5 u/ meal, which did nothing for my bgs. After 3 days, upped to 5 U per meal and thats when the nausea utterly killed me for two weeks till I got used to things. Cut my bolus ratios in half. Then I upped to 7 u- and had to drop to a 1/35 bolus ratio for lunch and supper-1/15 on breakfast. I found, that injecting immeadietly post-meal kept things so that I could eat enough. I also bolus post-meal, maybe that helped it.
My post meal numbers never went above 150, they were totally awesome. I did have to my basal down to 0.05, for much of the time between mid-morning to post supper, because I'd just keep dropping. I then went up to 10 U/meal, was on that a full day before I went into DKA(not the fault of Symlin, a whole other story), spent some time in the hospital-needless to say, got took off of Symlin till I got my appetite and my numbers back together! But I want to try it again it was amazing stuff. Hope you find something that works for you. (Comment this)

Written by: Heidi at 2005/09/17 - 22:41:39
15 - Here’s my story. I’m a Type 1 of 41 years and using multiple daily injections. Before starting Symlin on 9/1/05, my daily dose of insulin was 15 units Lantus in the AM, 8 units Lantus before bed and total Humalog per day anywhere from 2-12 units in various injections depending on pre-meal BG and what I planned to eat. My last A1C level was 7.5 in mid-June ’05.

Since starting Symlin, I have had similar results to Sunny. My BG seems to be on the higher end (ie not above 400 yet), but then again, no real lows. So, I am struggling to get my BG in a more normal range to where I was before using Symlin and also to get BG on a more even keel.

Since starting Symlin, my experience has not been peachy creamy as follows:

- Both Lantus and Humalog were reduced in half upon beginning Symlin.
- Some tiredness, but not sure if that’s related to higher BG.
- On day 3, went back to my pre-Symlin dose of Lantus on my own accord because couldn’t tolerate the higher BG and tiredness.
- Appetite the same, which isn’t big to begin with.
- Might have lost a pound or 2, however could stand to lose about 20 lbs. Also wonder if the loss is due to higher BG.
- No nausea at all until day 15 in which I had already been using 10 units of Symlin for 7 days. I believe this may have happened because I took 3 units Humalog for a 231 BG before dinner to help begin the lowering process. However, took 10 units of Symlin 20 minutes later and then began eating. An hour after that vomited.
- Since day 5, began cutting back on Lantus again per endo instruction. Apparently Lantus interferes and doesn’t work well with Symlin (something I didn’t know).

I plan to hang in with Symlin use because apparently it is suppose to help relieve those after meal BG spikes and perhaps start a reversing process with diabetes. However, everyone is different and I don’t know if the number of years of diabetes and how well one has taken care of oneself has a bigger impact in the picture. At least half my diabetes life was before BG monitoring equipment, and therefore I didn’t have a handle on how high “high” was with urine testing. Yep, I am frustrated with the BG control after starting Symlin, but I will continue on the path. Also, I wonder how higher BG will affect consequences if it continues.

Btw, if any Type 1’s have high BG (ie >200) before a meal, how do you handle insulin and Symlin doses (ie amount of Humalog and timing)? Babe (Type 2) mentioned that he takes Symlin before eating and Humalog immediately following a meal, but I’m sure that is based on pretty much normal BG before a meal. If I have high BG, I don’t necessarily want to eat.

Thanks to all who have shared on this blog! It’s great to hear about the successes most are having which then gives me more hope. However, it’s also good to hear the other side which then helps in the understanding of this new medication. Special thanks to you, Babe, for all your input into this blog.

-Deb
 (Comment this)

Written by: Deb at 2005/09/18 - 19:09:51
16 - Have been reading all your comments. Developed T1DM at age 10, I have had it for 30 years. I have an insulin pump and began a low carb lifestyle about 6 years ago. Lost about 20-30 pounds at first, but have gained 10 back. With all the exercise I do and low carb I still am "bulky" and build mass quickly. I have heard rumored reports of people using Symlin in their pumps. I guess that will be the new frontier. Anybody have any thots or wisdom on how they have kept weight down and if symlin is an adjunct to help lose weight? I don't have poor control but don't want to be a "bulky" diabetic.

Steve (Comment this)

Written by: Steve at 2005/09/19 - 15:25:47
17 - Steve, I am on a pump and I am symlin. You dont put the symlin in the pump you need to inject it. I have had diabetes as long as you also.
Alicia (Comment this)

Written by: Steve at 2005/09/19 - 19:15:09
18 -
Steve,

My reading agrees with Alicia's statement - I have not heard of anyone putting Symlin in a pump.

The primary purpose of Symlin is glucose control. It has the "side effect" of causing weight loss. The weight loss is caused by Symlin giving you a "feeling of fullness" shortly after being injected - if you feel full, you will eat less.

Symlin is the synthetic version of the natural hormone amylin, which is normally made in the beta cells of the pancreas - the same as insulin. Symlin is not insulin - it works as a "team" with insulin.

Research indicates that, if you are making little or no insulin, you are probably making little or no amylin.

Since starting Symlin, I have had an increase in my energy level and significant weight loss.

The Babe


 (Comment this)

Written by: BioBabe at 2005/09/19 - 19:42:22
19 - Help! I don't understand why I am not having any results with Symlin on wieght loss and my BG has not come close to the normal range. 19 years type 2. Tried Byetta first and got violently ill for 1 month. Endo changed me to Symlin and I have had no ill effects but hardly any life changing effects either. Am I the only one that this miracle is not working? I have cut my novolog in 1/2 but I am still on massive lantus (50units) at night. I have noticed I feel better and my skin is not so dry. Hairdresser said my hair was fuller. Is there anyone out there who is having the same experience? (Comment this)

Written by: nobagholder at 2005/09/21 - 05:12:34
20 -
Nobagholder,

I am T2 for 26 years. I have done a lot of "trial & error" and arrived at this program which works best for me:

I use 50 Lantus at night. I use Symlin 4 times a day at 4 hour intervals, no snacking. I am slowly working my way into an exercise program.

My order when using Symlin is: test - inject Symlin - eat - inject Humalog(fast insulin). My Symlin is always 20 units and always injected within a couple of minutes prior to eating. I always finish eating within 10 minutes of using Symlin.

My Humalog is based on my own index/sliding scale. I was at about 110 units/day previously, now an average of 45.

I have been on Symlin 12+ weeks, blood sugars are good, and I have lost 36#, mainly during the first 6 weeks. I still weigh over 250 and use a 1500 cal balanced diet - which is easy to do because of Symlin. I have much more energy and a "feeling of well being" I have never had before.

It would be interesting to know why your endo started you on Byetta - please "talk to us".

Good luck!

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/21 - 10:48:31
21 - Some messages from our sponsor:

(1) Please spend a few minutes at the Diabetes Monitor website (CLICK HERE) and read more about diabetes.

(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(3) Finally, if you like to answer polls, there are lots more at the Diabetes Monitor, at Polls.

Many thanks, from Steph & Bill Quick

 

 (Comment this)

Written by: Steph & Bill Quick at 2005/09/21 - 17:31:42
22 - Hi all! I am still being very successful with Symlin. I have lost 10 pounds now after only 12 days. My energy level is varying. Some days I feel great; other days I have no energy at all. I am NOT hungry, until night. It takes will power not to eat at night for me. I am still taking 20units 3 times a day with my meals. I am not snacking unless I have to. I have had a couple hypos. My insulin is cut down to 40 unites in the morning and 20 units at dinner of Humulin N. Breakfast and dinner are usually 12 hours apart, usually 8 and 8. I am eating very little at all 3 meals. I cannot follow my diabetic diet any longer...it is too much food. I get sick if I try to eat it. My 12 day average of blood glucose is running around 120. I hope to have it closer to 100 within the next few months. I want a normal A1c. I am getting very excited...if I lose two more pounds, I am back under 200! My only worry is that I am not eating enough, but I am really enjoying the weight loss. I do not go back to my endocrinologist until October 12, but I am in touch with him weekly. I am getting a little better with all this, if I can help anyone, please let me know. Everyone is so inspiring!

Jessica Miller (JM) (Comment this)

Written by: Jessica Miller at 2005/09/21 - 18:49:18
23 - To answer your question, I do not know why my endo started me on Byetta. I really think the Lilly rep. had been there that day and it was a month later that an Amln rep. came to see her. This is not a big city. I started an exercise program today with moniter for my heart. ( I have some vascular blockage in my leg so exercise is not easy for me.) I only hope that some weight loss will happen by adding exercise. I am almost at my wits end because my diet has been 3 Gycerna weight loss shakes (290 calories each)and that is all. As you know, I am not hungary since the Symlin does a great thing in the brain, but I can not imagine why I am not losing some weight.I too have a great feeling of well being and believe that this is a big peice of the puzzle to the big picture. I own stock in AMLN and if it would start working I would make that ticker tick by investing it all. LOL Thanks for asking Babe. (Comment this)

Written by: nobagholder at 2005/09/21 - 18:51:15
24 -
I am a normal person, with some self doubt, just like y'all. Sometimes I say to myself "self, why are you continually running-off-at-the-mouth on the Symlin blog and looking like a blithering idiot in front of some pretty darn' nice people"? I suspect that is part of the reason that I asked Dr. Bill to not publish my name and phone number on the "Kelly Model" spreadsheet for Symlin (besides, her boyfriend might come after me)!

I am not a "spotlight" type of person. I am just an overweight, retired, happily married, diabetic engineer who likes to write - and has a deep-felt desire to help people ... but I digress ...

The following came from the Yahoo - Finance - AMLN message board. If I recall correctly, the writer is a pharmacist.

------------

Diabetes blogs
by: martyhah
Long-Term Sentiment: Strong Buy 09/21/05 03:12 pm
Msg: 145382 of 145390

I took a look at the Symlin blog at DiabetesMonitor.com and came away with these two impressions:

1. Symlin use is not as straight forward as Byetta. There is definitely a learning curve in implementation, but those who have stuck with it have been getting good results ... (Deleted per Dr. Bill's rules).

2. The Babe has done more in service to his fellow man by his dedication to this blog than most of us will in our lifetimes. My hat is off to him, and I wish him continued success.

(The balance of the post has been deleted per Dr. Bill's rules).

-----------

I guess y'all are stuck with my diatribes for a while longer.

The Babe

PS - If you ever do really need to get in touch with me, Dr. Bill and I "talk" by email ... this offer applies to everyone ... except Kelly's boyfriend!!


 (Comment this)

Written by: BioBabe at 2005/09/21 - 20:21:59
25 - === Off topic post ===
Please read Dubious comments at this blog

Thanks. (Comment this)

Written by: Bill the diabetesdoc at 2005/09/22 - 19:41:10
26 - Nobagholder,

Sunny here---I just thought I'd give you all an update. I'm now approaching the end of week 3 and I continue to have elevated BG's 2-3 hours after a meal--however the numbers are getting better. I seem to have the most "trouble" between breakfast and lunch. I have increase my meal bolus back to a ratio of 1:10 but I give half of the bolus at mealtime and then extend delivery on the remaining half for another 1-1/2 hours. This seems to be working the best but will need further fine tuning. Bottom line at end of week 3: I have not been able to reduce my insulin dose, I have not lost much of my appetite but have lost 10 pounds, my BG is still high after a meal, and I have not had much trouble with the nausea, etc. I have not experienced the "magic" yet - I sometimes wonder if I was given a vial of the placebo! Like all of us--my main goal is to get the blood glucose levels into a "normal" range and have been frustrated with the results thus far. I have one more week to go before I seeing the doctor and will discuss all this with her.

Babe-thanks for all your input and your efforts to keep this dialog going. It's great to share our experiences-both good and bad.

>>Sunny (Comment this)

Written by: Sunny at 2005/09/22 - 23:19:57
27 - Nobagholder-
I also have only had minimal success with Symlin. While my blood sugars are down overall, they still are not where they need to be and I really think that I have become even more carbohydrate sensitive. I have gained back the 8 pounds that I originally lost and no longer get the full feeling. Additionally, I already take 20 units with meals which is more than the typical type 1 takes. I am frustrated, but happy to have lower readings. I would feel better if they at least made a pen to make administering the symlin a little bit easier.

Jessica (no initial) (Comment this)

Written by: Jessica at 2005/09/22 - 23:29:46
28 - I am a type 1 diabetic for 15 years and I've been on symlin for about a month now with great results


1) Blood sugars have never been so steady. I went from a roller coaster from 50 to 300 just about every meal to an average range of 80 to 150 all day long (before and after meals).

2) Haven't felt this strong (physically and mentally) in over 15 years.

3) Only very minor and short nausia for the first 2 weeks, then no nausia at all, just a nice, full feeling after each meal.

4) Lost 7 pounds and now I'm close to optimum weight for my height.

5) I have mixed Humalog and Symlin in a single pre-meal shot for the past week now and noticed no differences at all in either drug's effect. I guess the FDA is conservative once again and doesn't care if the prescription says you can't mix them. So, for me, I have added Symlin to my regimen with no extra shots!

6) I noticed that the symlin works so well, that if my BG is below 130 before a meal, I will eat a light snack before the meal to get it closer to that range. The reason for this is the humalog dose would acts very quickly with symlin and doing this reduces my chances of having a post-meal low.

7) Before symlin my carb to insulin (humalog) ratio was 12 grams of carbs to 1 unit of insulin. Now, after symlin, it is a consistent 24 to 1 ratio. My endo told me to half the humalog doses and that worked out just right.

8) My endo told me to reduce lantus from 18 to 12. I did that and my BG sugars pre-meal were too high for the first couple of days (around 240). So, I gradually increased my lantus at night until I got to 25 units nightly and that seems about perfect for me.

Symlin going to change millions of lives in such a positive way (including mine).

Hope this helps,
Eric (Comment this)

Written by: Eric Feibelman at 2005/09/23 - 00:16:15
29 - HAS ANYONE HAD HEADACHE WHILE USING SYMLIM. I JUST STARTED ON SYMLIN HAD A BAD HEADACHE. DID NOT USE IT FOR A FEW DAYS JUST STARTED AGAIN TODAY AND HAVE A HEADACHE. (Comment this)

Written by: carole at 2005/09/23 - 16:50:33
30 - To Sunny and Jessica, thank you so much for your comments. I feel better now knowing that I am not alone in this uncharted land. I still feel such a wonderful feeling of well being, like Babe said. I would probably fight you if you said you were taking my Symlin away. I see the endo on Monday and will have an A1C. Does anyone have congestion after their dose of Symlin? I have that but it does not last long, kind of blows out the old snoz and then it is over. Let us all hope we are in for the Magic soon. Pray for the Gulf coast. Good luck to all. (Comment this)

Written by: nobagholder at 2005/09/23 - 21:23:10
31 - Eric, might I suggest that you lower your humalog dose if your bgs are under 130? How low have you gone that this is a concern?

Just as you would add more humalog to correct a high pre-meal bg, you subtract humalog for a lowish pre-meal bg.

Diabetes is basically self-treated and we need to know our reactions to carbs and insulin so that we can customize our doses constantly on an as needed basis. Especially since symlin is a fixed dose.

Helen (Comment this)

Written by: Helen at 2005/09/24 - 07:54:01
32 -
THE FOLLOWING IS FROM YAHOO - FINANCE - AMLN
-------------------------------------------

My SYMLIN - a 90 day update
by: biobabe
Long-Term Sentiment: Buy 09/23/05 01:21 pm
Msg: 145584 of 145615

I am Day at 90 using Symlin and well past the "new event" stage. It has become a normal part of my everyday life.

My blood sugars remain good, but are moving around some as I add new foods to my routine. I will get an A1c test soon, then we will see the "true" effects of Symlin on my blood sugars.

My other diabetic meds are "fixed" at 50 Lantus in the evening, Humalog averaging about 45 a day, and Glucophage 1000 morning and 1000 evening. I also use about 6 other prescription meds, will meet with my GP soon to discuss reducing or eliminating some of them.

I now use Symlin 4 times a day at four hour intervals. Five times/day is just too inconvenient and 4 times seems to work just as well - or better.

I am down 36 pounds. My rate of weight loss has slowed - I assume part of it is the added muscle I have developed by using the rowing machine (I find it hard to believe that I can still get that "rock solid" feel in my legs at the age of 64)!

I talked to my nutritionist yesterday and will drop my calories to about 1300 - 1400 a day to speed my weight loss a bit.

I feel great!! My energy level continues to be high, and this wonderful "feeling of well being" has not diminished at all.

The Babe

PS - I remain active on the Symlin blog. I have no way of telling how many diabetics read it, but I feel that "Dr. Bill" has done a **MAJOR** service to the diabetic community with the various blogs he has established. ("Dr Bill" is Dr. William Quick, endocronologist).

There is now a "diabetic spreadsheet" named "THE KELLY MODEL" available on the website - it is free, "no strings attached" - and has thorough instructions for those who have an interest in a "technical" approach to using these two great, new, next-generation diabetic meds.




 (Comment this)

Written by: BioBabe at 2005/09/24 - 10:59:13
33 -
Eric,

I wrote a much longer response to you earlier today but it seems to have disappeared - I probably "fat-fingered" a
key.

Two items from my experience:

1) "Mixing" may work and may be convenient, but it may not be the right thing to do. I use Symlin just before eating and Humalog 10 - 15 minutes after eating. This allows my food to get my blood sugar "headed up" before Humalog starts working - I never have a "low" just after eating. I believe you will find that Humalog "rules" allow injection up to 15 minutes after eating.

KEEP IN MIND THAT SYMLIN CANNOT CAUSE LOW BLOOD SUGAR WHEN USED BY ITSELF. SYMLIN IS NOT INSULIN!

2) I always try to have my glucose at 85 just before eating. It took me about 9 weeks of trial and error to get to 85. That number works for me - it may be wrong for everyone else.

Keep on truckin'

The Babe
 (Comment this)

Written by: BioBabe at 2005/09/24 - 16:48:31
34 - Per the posts listed, it seems like many are getting good to great results with Symlin. Well, I also heard that it may take 3-4 months for some to feel the real magic of Symlin (it may take this time period for Symlin to begin working with the beta cells). Is this true? (Comment this)

Written by: Deb at 2005/09/24 - 20:04:31
35 -
Deb,

I just went back to Day 1 in my log: "Feel pretty good, didn't want all of my food".

Day 2: "Feel full, feel good".

On Day 8, "Assume feel good unless otherwise noted".

Was every day "good" during this last 90 since I started on Symlin? No. I had one very rough "low blood sugar" session not related to Symlin, and also a couple of "yuk" days when I went "cold turkey" off caffeine.

The "increased energy level" and "feeling of well being" I have mentioned increased during the 90 days - I now feel excellent almost all the time - but an occasional minor "low blood sugar" event will still "make me flat" for a few hours. Keep in mind that during that 90 days I also lost weight, switched from a low-fat diet to a balanced diet, started exercising, and totally cut out caffeine.

I think I "Hit The Magic" starting around Days 45 - 60.

Both amylin and insulin are normally made in the beta cells of the pancreas. Many diabetics make neither one, and all diabetic have some "shortages" - or they wouldn't be diabetic.

Amylin and insulin work together as a "team".

Amylin is not insulin.

Symlin is the synthetic version of amylin.

Now that you are "totally bored and nodding off", please re-read this in the morning - it will all become clear!

The Babe

 (Comment this)

Written by: BioBabe at 2005/09/24 - 21:36:57
36 - Day 16 on Symlin, and I am still doing well. I am starting to have to control my own hunger more. At first, I got full after a few bites, now I am having to control my portions on my own somewhat. Weight loss still continues, but I have lost some of my energy. Has anyone had a lot of diarrhea on the symlin? Also I did notice that someone posted about congestion with taking it, and I have had some actually. I did have a cold when I started taking it and about a week into my doctor started me on Amoxicillin. On Friday I broke into a rash. I called Amylin and they told me no one had a rash with it as an allergy. Anyways, I had to stop the Symlin for a day, but we found out it was the Amoxicillin. I was very relieved! No one is taking away my Symlin! Babe, I have a question for you, if you do not mind...do you take your meds an hour before Symlin or after or what? What has worked best for you? I am on blood pressure meds and Glucophage 1000 am and pm. I just want to get the most effectiveness out of them also. Thanks! Well, keep posting everyone...it's so nice to come here and feel as if you aren't alone! Also, since there is another Jessica on this forum...I will just go as JM.

JM (Comment this)

Written by: JM at 2005/09/25 - 19:14:06
37 -
JM,

The things you mention in your first 3 - 4 lines also happened to me to some degree - just "stay with the program" - it will all work out.

I had "loose stool" the first 4 days on Symlin, then maybe once a month after that.

I take Symlin 4 times a day @ 7am, 11 am, 3 pm, and 7 pm. My procedure is -test - Symlin - eat (finish within 10 minutes of taking Symlin) - Humalog (generally 10 - 15 minutes after finishing eating).

Occasionally I will stretch that 4 hour interval to as much as 6 hours - never had a problem with it.

My other meds are Glucophage, also high blood pressure, blood thinner, and edema stuff. The instructions say take them with food twice a day. I take them at 7 am just after eating and 7 pm just after eating. I have occasionally waited for over an hour after eating to take them and never had a problem.

--------

I have gotten used to having "easy" hypoglycemia events occasionaly. Last night I went from 50 to 55 Lantus at about 8 pm - this is something I have not changed in well over a month. My Lantus has a "high spot (meaning a little lower blood sugar) at about 4 - 6 hours (during the night for me) and then "holds steady until about 21 hours, then just sort of dies off. I had no problem with it last night.

Today I reduced Humalog after my 7am Symlin, food, etc. and at noon was 96 (my goal is 85). I then did my normal routine - and apparently screwed up the Humalog dose. At 3 pm I was ready to get on the rowing machine - started "sweating" before I started exercising, so somethin' ain't right - checked my sugars, down to 61. Started with 3 glucose tabs, which is usually all it takes for me. This hypo event kept getting worse. After 1 1/2 hours I think I had eaten about a grocery cart of food - and then went looking for chocolate!! Why was this one so bad? I'm clueless!! Anybody ... anybody ... ?

The Babe




 (Comment this)

Written by: BioBabe at 2005/09/25 - 22:11:01
38 - I will probably be offline for about 10 days - The Babe (Comment this)

Written by: BioBabe at 2005/09/26 - 00:10:40
39 - Babe,

Thanks for the sharing your experiences with Symlin. After 25 days on Symlin, I truly wish I could say some of the same. Unfortunately, my energy level is worse, my BG levels are harder to control, no weight loss, pretty much the same appetite (which wasn't big to begin with) and I do exercise but my BG level usually increases after I am done. Can't wait to see what 45-60 days will bring. However, curious to know what most are doing if you have high BG before a meal. Are you taking your normal Humalog dose to lower the BG level, or do you still take 1/2 dose because of Symlin? Thanks! (Comment this)

Written by: Deb at 2005/09/26 - 06:02:57
40 - I have been a Type 1 for 33 years.
An Animas pump user for 3 and a half.
With my pump my A1C's dropped to 7.1-7.3 on the average with one 7.6 recently.
I have had PDR laser surgery (5-6 years ago) for retinas and am doing excellent since then
I hate low blood sugars. I hate naseau (3bouts with food poisoning took care of that)
I exercise a lot (3-5 days a week 45 minutes to 1 and half hours usually, sometimes 2-2.5 hours) all aerobic cardio work (cycling).
My job involves a lot of walking and activity also. It is also high stress.
I could use to lose at least 15-20 pounds and tend to carry more weight at my waist line since pump sites are there now.
I still eat some foods/meals that would be considered high fat (mexican food, chinese food, and italian food) but usually use olive oil, canola margarine, avocado and other fats that are healthier at home.

I need to hear from someone who exercises a lot, who is using Symlin, whose body responds to stress typically by dumping glucose into their bloodstream typically without you knowing, and whose system spikes 4+ hours after a high fat meal.

Also, doesn't this take high maintenance to another whole level? How are people feeling about the balance or lack of it in dealing with all of this??

I'm scheduled to see my new endo who was part of the trials for Symlin on thursday.
thanks (Comment this)

Written by: Margaret at 2005/09/26 - 20:18:37
41 - I am on my third week of using Symlin. I am trying not to be discouraged but it is hard. I am Type 1, insulin pump/Humalog user. My A1C's before starting symlin were around 7.2-7.5. I gradually began the process as many of you have described. I have had a lot of nausea, some from the symlin but more than anything from the highs I have been experiencing. I am just wondering if it will work for me. My blood sugars have been erratic at best. Mostly high which is unusual for me. Now they have begun to get low in the first 30-60 minutes after taking the symlin, humalog and then eating. My insulin to carb ratio has not decreased as much as I anticipated. I was 8:1 pre use of symlin and am now 12:1. I called the doc for more directions today. Anybody has any suggestions? Currently, I am injecting the symlin about 10 minutes before eating. Then with my first bite of food I am taking the humalog. Any help you could offer would be much appreciated.
Thanks,
Annie (Comment this)

Written by: Annie at 2005/09/27 - 02:17:02
42 - Does anyone know if the reason behind the weightloss for Type 1's using Symlin has more to do with erratic BG levels rather than the tight control many had with their pump before starting Symlin? (Comment this)

Written by: Deb Haynes at 2005/09/27 - 02:47:59
43 - I am a type one of 12 years, on Lantus, Humalog and Symlin.

I found when I cut my humalog dosage by half (as is recommended) my bgs were too high after eating...so I increased. I also found that the 5mcgs did nothing- but the 10 mcgs really does work. (Personally, I think it is worth being a little nauseous for a few days to get the effects. I no longer feel nausea.) (I've been on it for about 2.5 months).

I now take about 2/3 the amount of humalog premeal, and my bgs are VERY GOOD! I don't get the high post prandials anymore. I have lost some weight and I generally feel better. Also I can eat carbs without a huge post meal spike.

It took a while for me to figure it out- but now I would not want to go off Symlin. It has a subtle but very powerful effect, and I really like taking less insulin. (I take about the same amount of Lantus). (Comment this)

Written by: Anonymous at 2005/09/27 - 15:21:22
44 - Thanks for your comments, Anonymous. Curious to know how much Humalog you take pre-meal while using Symlin and how much total Lantus per day? Reason being, my endo feels that ultimately Symlin is not as effective while using Lantus. The goal is to get me off Lantus. I think the cutback in Lantus by 1/2 when starting out threw my BG levels way out of wack and in the higher range (therefore my lack of seeing any changes w/Symlin). Yesterday I was switched over to Humlin N at night only and to continue with small doses of Humalog throughout the day. Recently I was fluctuating btwn 16-23 units of Humalog in divided doses and still no change in BG. I also heard that most pump users don't take that much Humalog per day. Can anyone vouch for that? (Comment this)

Written by: Deb at 2005/09/27 - 21:36:48
45 - You are a type one and your endo is trying to take you OFF Lantus????

I have never heard anywhere that you should even cut your lantus dose when on Symlin. What possible reason could there be to do that? Symlin is NOT a replacement for basal...that seems like a very strange strategy, and is absolutely why your bgs were all over the place. The only possible reason to go off Lantus - if you are indeed a type one - is if you are going on a pump.

I actually take slightly more Lantus- 16 units at night. (Before symlin I was on 14 or 15- very minor adjustment). Depending on what I eat I take between 2-5 units of H pre-meal. I only take 5 when I eat a particularly high carb meal. (I used to take 8 or 9 and still get the spike....now no spike!)

I am worried about your endo. Cutting your lantus in half because you are on symlin - which is only active in the body for 45 minutes or so after the shot - seems like a literally INSANE idea. And I simply cannot understand why he would imagine that you could stop taking it? What possible benefit could there be of taking N (byt heat I assume you mean NPH?)

I sincerely hope he is not telling his other type ones to stop taking their basal insulin. If he is he should be sued for malpractice. If you are a type one and your endo is giving you this bizarre and dangerous info you should get a new endo ASAP.

In the meantime, if I were you I would go back to your normal Lantus dose, cut your H down (personally I recommend taking 2/3- but you can start at 1/2 if you are worried about hypos), and stick with the Symlin. It really does work- and I am taking Lantus. (Comment this)

Written by: Anonymous at 2005/09/28 - 15:29:31
46 - 45 days on Symlin. I don't guess the magic is coming. My a1c was not much better 10.3 and the congestion and sneezing, running nose and eyes are becoming very hard to take. I am wondering what a mild allergy would feel like. I can find nothing in the patient papers. I have not lost any weight even though I am excerzing 5 days a week and am on 1000 cal. diet. My BG which had leveled out in the low 200's have now started spiking in the 300's. I take 50 Lantus at night, 20 Novalog 20 Symlin before meals.(no mixing it, by the book) Any thoughts? (Comment this)

Written by: nobagholder at 2005/09/29 - 07:04:40
47 - Are you sure you aren't having any other issues? I have had none of the symptoms you describe on Symlin. (Comment this)

Written by: Anonymous at 2005/09/29 - 16:44:18
48 - Some messages from our sponsor:

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 (Comment this)

Written by: Steph & Bill Quick at 2005/09/29 - 20:50:39
49 - Thanks again for your input, Anonymous. I spoke with a healthcare professional at Amylin today to discuss the reduction of insulin while using Symlin. She definitely mentioned pre-meal insulin reduction, but wasn't clear on long-acting insulin. Consequently, I placed a call to my endo to understand the reason behind the long-acting cut. I should hear back tomorrow.

Yes, I am a Type 1 of 41 years. I hope to get to the bottom of this so I can start seeing some Symlin results like others. As mentioned in my prior posts, no weight loss for me, same appetite, no nausea, higher BG levels and exercise doesn't even help to lower BG. Have been using Symlin for 29 days now. (Comment this)

Written by: Deb at 2005/09/30 - 03:32:58
50 - Deb,
I am sorry you are having so many problems. I really think your endo misled you. Symlin is not meant to replace basal- the sole purpose is to get rid of the after eating spikes. It really does work for this. (And it also seems to reduce appetite- not sure why that is).

I am on an internet list on which many people are taking Symlin and none of them have cut back their Lantus dosages. I don't believe there is anything in the Symlin literature to suggest this either.

Perhaps your endo got Symlin confused with Byetta? (That's another drug made by Amylin- but it is for type 2's). You should make sure you tell him that Symlin is only active in the body for about 45 minutes after the shot. He shouldn't be advising his patients to stop taking or cut back on their basal...I really can't understand the reasoning behind those directions.

If he continues to tell you to cut back on your Lantus I would find a new endo.

In the meantime, if I were you I would go back to my regular lantus dose- with or without Symlin. You can always try Symlin again once your blood sugars are under control again. It must feel terrible to have such high sugars...would drive me nuts.

Hope you start feeling better.... (Comment this)

Written by: Anonymous at 2005/09/30 - 19:05:20
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