Diabetes.Blog.com

1 - For those for whom Byetta is not working and are going to insulin, ask your endo about Symlin, a synthetic form of the amylin hormome for those with multiple insulin injections which may help your A1c control, and will also probably help with beneficial weight loss and glucose spikes. See also www.Symlin.com for the doctor and patient sheets. Maybe a blog should be set up for that drug. Good luck.

Written by: zepnot at 2005/07/20 - 16:16 (Comment this)

2 - symilin if for use with Type 1 diabetic who are on insulin. If you are type 2 you probably should not take symilin. I believe symilin is taken three times a day and has complications of low BS. Go to Byetta websie and both are explained there. Also Amylin website has an explanation. Originally my Endo thought I should be on Symilin but then realized that my tests before I began indicated Byetta was a better fit. I hope this is helpful but please get confirmation from a professional. I am personally struggling with upset stomach after 6 weeks on Byetta. I am also having diarehea for three days. I find this blog very helpful. Thanks for starting this effort. John (I stll can't get the Name and e-mail to operate on the comment card. I am glad the comment card takes my blog.

Written by: Anonymous at 2005/07/26 - 01:33 (Comment this)

3 - Symlin is for both type 1 and 2. Islets excrete both insulin and symlin. I guess using both insulin and symlin may benefit us better than insulin alone. They said byetta stimulates beta cells to function. If some of us don't have enough good beta cells, symlin may be a good choice? (Comment this)

4 - Symlin is for both Type II's who have multiple insulin injections per day. Both Type I's and Type II's on insulin likely do not get enough of the amylin hormone which is secreted by the same pancreatic beta cells that secrete insulin. Symlin, as I wrote, is artificial amylin.
Symlin was shown in Phase III trials to cause beneficial weight loss and lower HbA1c. Perhaps most importantly, it seems to lower glucose swings due to its effect on post-prandial emptying. These swings are often responsible for diabetic complications.

Since it lowers your glucose, it must be very carefully introduced to Type I's, titrated in a half dose for a month to reduce the chance of hypoglycemia. Type II's did not have as many problems with hypoglycemia in the first month, though they are strongly advised to do the same.

Longer term, it may reduce total average hypoglycemic events. The website or a doctor who is familiar with Symlin will probably explain it better. (Comment this)

5 -
I have been on Symlin for 28 days. Unlike the people in the clinical trials, I have had the freedom to adjust my insulin, my diet, and my Symlin schedule as needed. I am retired and "working on my health" full time - my wife calls me "the lab rat". I keep excellent records.

I normally post on the YAHOO - Finance - AMLN board and will typically "cut and paste" from there to here.

Started Symlin on 27 June. Age 64, diabetic for 25 years, possibly as a result of Agent Orange in Vietnam - no family history. Typical diabetic progression. Humalog was over 100 per day, Lantus 85 per day, low carb diet, A1c was 5.8. Cardiac double-bypass 5 years ago. Two toe amputations and "fem-pop" bypasses in each leg during the last two years.

If you wish to contact me, post your email address in tnis blog with your question(s).

To address any credibility issues - I am an engineer, age 64, married 39 years, live in Metro DC area, 3 kids, 4 (wonderful) grandkids, spent most of my adult life as a project manager in construction, broadcasting, and IT.

The Babe

 (Comment this)

6 - Symlin update #6

Day 22 through Day 28 (July 18 through July 24). I am Type 2. This was my third full week on a normal dose of 80 units/day of Symlin (I also spent 1 week on ½ dose). See my prior updates for more info.

COMMENT

The abstract that I recently posted on the relationship between amylin (Symlin, pramlintide) and insulin is a real eye-opener for me. (I have not been able to obtain a copy of the full paper as yet). It is apparent that my problems with diabetes, weight gain, toe amputations, leg circulation problems, peripheral neuropathy, etc. for all of these years would have been reduced if I had been able to use amylin along with insulin.

GENERAL

I continue to take a “laboratory” approach to adjusting Symlin, meds, diet, etc. I am keeping a very good log. Per my request, my endo increased my Glucophage from 1000 to 2000 units per day on Day 25.

FEELING OF FULLNESS (Satiety)

I continue to eat because I should, not because I am hungry.

INSULIN

I am at 60 units of Lantus, down from 85 units.

I currently use about 10/day of scheduled Humalog, down from 100.

My glucose/insulin numbers are still “moving around” since I just changed from a “low carb diet" to a “balanced diet’.

WEIGHT LOSS

During this fourth week I lost 4# for a total weight loss in 28 days/four weeks of 25#. I am eating 120 carbs and 1200 calories each day. Since I am losing weight TOO fast, I will increase the calories soon. I am working with a nutritionist.

Weight is my #1 priority for the next few weeks., with #2 being making minor adjustments to my new drug program.

NAUSEA

May be gone.

EXERCISE

I am using the rowing machine occasionally, no “program” as yet.

The Babe

 (Comment this)

7 -
Here is an abstract I found online. It seems to explain why I am getting many "nice things" from Symlin. When used with insulin - and recognizing the inefficiencies of trying to "control" natural hormones by injection - I now apparently have at least a close imitation of the COMPLETE beta cell/pancreas function that I have not had during my many years on insulin without amylin!!!!
--------------------------------------
Clinical Implications of Amylin and Amylin Deficiency

Davida F. Kruger, MSN, RN, CS, CDE
Division of Endocrinology and Metabolism, Henry Ford Health System, 2799 West Grand Boulevard, Detroit MI 48202 DKRUGER@diabetes.org
Patricia M. Gatcomb, RN, CDE
Yale University, Department of Pediatric Endocrinology, New Haven, Connecticut
Susan K. Owen, MSN, RN, CDE
Grand Rapids Associated Internists, Grand Rapids, Michigan

PURPOSE
this paper presents an overview of the physiology of glycemic control and the mechanisms of amylin deficiency in people with diabetes. Benefits of replacement therapy with both pramlintide and insulin are discussed.
METHODS
The discovery of the pancreatic p-cell hormone amylin, which is cosecreted with insulin in response to hyperglycemia, has prompted a reanalysis of the mechanisms underlying the control of glucose homeostasis. A review of the current literature on amylin and amylin deficiency provides the basis of this reanalysis, with a discussion of the clinical implications for people with diabetes.

RESULTS
Amylin appears to work with insulin to regulate plasma glucose concentrations in the bloodstream, suppressing the postprandial secretion of glucagon and restraining the rate of gastric emptying. People with diabetes have a deficiency in the secretion of amylin that parallels the deficiency in insulin secretion, resulting in an excessive inflow of glucose into the bloodstream during the postprandial period.

CONCLUSIONS
While insulin replacement therapy is a cornerstone of diabetes treatment, replacement of the function of both amylin and insulin may allow a more complete restoration of the normal physiology of glucose control.




 (Comment this)

8 - Symlin - "my startup"

I have completed the “titration “ period (about 2 weeks) for my Symlin startup. The following are things I would change/not change if doing it over. I DO NOT COMMEND THESE SUGGESTIONS TO ANYONE FOR THEIR USE. They are just an FYI review of my experience when starting Symlin.

CHANGE:

1) AMLN provided my endocrinologist a 2-sided instruction sheet to give to me prior to me starting on Symlin. There were some “fill in the blanks” for the endo; however, most of the info was pre-printed. My endo called for changing from 40 units to 80 units 7 days after my last feeling of nausea. I would go to 80 units 2 days after the end of nausea.

2) I would start Symlin on a Saturday morning when I would be home for the weekend. The nausea I felt was very light (lower) stomach cramps about once a day, lasting a few minutes, for four days. I also had “loose stool” (not diarrhea) for three days. These items diminished daily.

3) I would not start a serious diet on the same day I started Symlin. Symlin went to work immediately after the first injection. Minutes (10 - 40) after the injection I felt full - not unlike an hour after eating a large dinner - and I no longer felt like eating. I would probably lose weight just on the reduced caloric intake caused by this phenomena.

4) I would start the serious diet after I finished “titration”.

5) Symlin has a ½ life of 48 minutes., so it loses most of it’s effect within 2 ½ - 3 hours of injection. I would ignore the occasional (minor) feelings of hunger prior to injection.

NOT CHANGE:

6) I prepared my food in advance so that I could eat immediately after the injection. After a few days, my “time allowed to eat” stabilized at about 10 minutes.

7) I switched to 5x16 = 80 units of Symlin at the same time I went to 80 units. This gave me less time to get hungry prior to an injection.

8) I drank large amounts of liquid, especially if I was getting minor hunger signals prior to an injection.

9) I logged everything. My adjustments to Symlin, insulin, and food were invariably made after referring to the log.

10) I fixed my own food. My diet is about 120 carbs and 1200 - 1500 calories a day.

11) I actually did start a serious diet at the same time as going on Symlin ... it was sort of “tricky” … by the end of the second week I was off Humalog … and losing substantial weight.

The Babe



 (Comment this)

9 - I've been on symlin for 4 weeks exactly. I have logged what happened with in on my blog at http://www.kweaver.org under the topic of Symlin.

I had a big weight loss to begin with, and am now slowly and steadily losing weight since. (Comment this)

10 - This is a question for The Babe and anyone else who has been on a low carb diet and is using Symilin. Since I eat less than 30 carbs at all meals is it safe and helpful to take Symilin? Iam type 1 and have elevated bs even on the low carb regimen. (Comment this)

11 - I have been taking Symlin for 3 weeks. The nausea is AWFUL. Does this ease up anytime soon??? (Comment this)

12 - I have read all the blog comments on byetta and am now looking for people who have experience with symlin. Right now I am taking humalog and Ultra Lente, app 40 units total, daily, metformin, 2500mg and actos, 45mg. A1c typically between 5.6 and 5.8. But I need to lose weight to relieve some of the pain from arthritis, fibro and extensive neuropathy. My goal is to stop both insulin and actos, which is why I am leaning towards byetta.

I do notice quite a difference in the measurements. People on byetta are taking 5 or 10 mcg shots twice a day. Here the Babe is talking about 80 units. How many units in a mcg?

Thanks, Helen (Comment this)

13 - I just happened to stumble on this site, so I'm not sure who I am sending this note to. I am in desperate need of some information of the Symlin.
I am a Type 1 going on 6 years. I have had a terrible time trying to get my BG's under control. We can't even seem to find a pattern to try to work with. I finally started on the Symlin, which I thought was going to be the miracle drug I've been waiting for. I had absolutely no reaction to the drug the first 2 times I used it. No side effects and no reduction in BG. In fact, due to reducing my insulin, I ended up in the high 400's. My doctor had me get a 2nd bottle and try that. This bottle Did give me the side effects of nausea and I felt full within a very few minutes. I was sick, but I was so excited that it was working. Within the 2 hours of post meal, I was 477. Is this normal? My doctor is telling me that I have to keep using it before it will work. But everything I've been able to get my hands on to read says that the side effects are something that will take a while to go away, but that the reduction in BG is right away, thus the threat of extreme lows. Has anyone had this experience of needing to wait for the lower BG's? Any resources I can use to find out more?

Desperately wanting to control this disease!

-Kim Richmond (Comment this)

14 - Roxie,

I was on a low carb diet for a couple of years before I went on Symlin (which is working great for me). During that two years I adjusted my insulin "as needed" several times a day to control my glucose - I got my A1c down to 5.8 - and I gained a lot of weight doing it.

Since I am Type 2 I don't know how much info I have that might be useful to you.

I send a weekly update to my endo - I will cut/paste the 5 week/35 day report here later today.

The Babe (Comment this)

15 - Donald,

I guess the nausea must vary a lot from person-to-person. Mine was fairly mild and went away at about 3 1/2 weeks.

Are your sure that you are eating only within about 10 minutes of injecting Symlin? I inadvertently ate twice during the 2 - 3 hours after injecting and got a huge "vomit" sensation each time.

Is your nausea just that -or- is it the "feeling of fullness" that happens a few minutes after injecting?

Talk to me!

The Babe (Comment this)

16 - Kim,

You may have reduced your insulin too much when you started. I just read back through my log starting the first day - I was testing about 8 times a day - and adjusting my insulin dose each time - and I still had one reading of 261 on Day 6. Things started settled down after I went on a full, normal dose of Symlin (80 U-100 units) on Day 8.

I made the mistake of starting a MAJOR diet the first day -should have waited until I got the Symlin & insulin working smoothly before starting the diet.

The Babe (Comment this)

17 - TO ALL,
THIS IS THE UPDATE THAT I SENT TO MY ENDO TODAY - THIS STUFF WORKS GREAT !! IF YOU WANT TO TALK TO ME DIRECTLY, POST YOUR EMAIL ADDRESS - KEEP IN MIND THAT I AM NOT A DOC, NURSE, ETC. - I AM JUST AN "END USER" LIKE YOU - WHAT I WRITE IS STRICTLY MY HISTORY WITH SYMLIN, NOT GUIDANCE TO YOU - SORRY ABOUT THE SCREWED UP TEXT ----THE BABE

TO: Dr. XXXXXXXXXX

FROM: XXXXXXX Type 2, height 5’ 9, weight 267, on insulin 14 years, age 64

DATE: 1 Aug 05

SUBJECT: SYMLIN update

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

DURATION end of week 5 day 29 through day 35 (July 18 through July 24)

SYMLIN DOSE 80 units/day 5 x 16 = 80

INSULIN DOSE 4 Humalog occasional minor doses @ 5:30 am & 1:30 pm
was 100+ before Symlin

50 Lantus evening insulin was 85 before Symlin

WEIGHT LOSS 28# in 35 days rate of weight loss has slowed as planned was 25# last week

BLOOD SUGAR 114 ave this week 72 tests
NAUSEA none - will no longer be reported

FEELING OF FULLNESS (Satiety) background” mode, I do not notice it

DIET “balanced” 1400 calories/day & 150 carbs/day

EXERCISE none to speak of

COMMENTS a near-optimum combination of Symlin, diet, and insulin


 (Comment this)

18 -
To all,

THE SECOND POST ON THIS BLOG BY "ANONYNOMOUS" IS VERY MISLEADING - PLEASE IGNORE IT!!

I am Type 2 and I am having wonderful results with Symlin!! See my "5 week update" to my endo (just above this).

The Babe
 (Comment this)

19 -
Helen,

The conversion is 1(one) U-100 unit = 6 micrograms. U-100 is the international unit of measure for diabetics/insulin and it is also what is found on diabetic syringes.

I believe that Amylin made an error in listing the drugs both ways - there is too much chance of confusion. I only use U-100 and never use micrograms.

This is a Symlin blog - I suggest not discussing Byetta here - there is a separate blog for that. Even though made by the same company, Symlin and Byetta have different properties and come from separate sources. I do not know, nor care to know, the dosing for Byetta - I might make a mistake if I did.

I personally use the "normal" Symlin dose of 80 U-100 units a day. My schedule is: 16 units @ 5:30 am, 9:30 am, 1:30 pm, 5:30 pm, and 9:30 pm. I eat each time and test each time. I also test 1 1/2 hours after each shot/meal, for a total of 9 tests a day (I do not test after the 9:30 injection).

Before anyone asks about my long day - my sleep requirement has been significantly reduced since starting on Symlin.

The Babe

 (Comment this)

20 - my first comment is to Helen: I'm not a doctor, but I have been on most of the meds you have been on. Consider dropping the Actos, (it's not good) and Ultra Lente. Try Novolin 70/30 40-50 units 2x day plus the Symlin and add 500mg Metformin at each meal (no more than 2000mg a day). As for your neuropathy, consider taking 1200-1600 mg of Folic Acid a day, it worked for me. Mobic helps with the inflamation caused by the arthritis. The last thing, if you take other medications space the Symlin by at least 3 hours. I hope this helps (Comment this)

21 - To Kim Richmond: my suggestion to you is, get a new Endo! As I told Helen, Novolin 70/30 in combo with Symlin may work better for the spikes you are getting. (Comment this)

22 - Dez, I am taking 24 units of UL per day and anywhere from 10 to 17 units of humalog. And 2500mg of metformin. Why in the world would I want to switch to a mix? My A1c runs from 5.6 to 5.8. I am looking at the amylin replacements for several reasons: I do want to stop actos. I also want to get off insulin, which is why I am also reading the byetta blog. And I want to drop these meds because I can no longer handle the weight I have gained with them in spite of low carbing. Other people's experiences will help in my decision. Helen (Comment this)

23 - I'm recently on insulin... well 3 kinds...

I am taking 50units novalog at every meal (or after meal)
30units symlin at every meal (or after meal)
70units lantis after 10pm each night..

I have not noticed any weight change... not sure if i'm taking all this right or not. my body does not seem to respond to small amounts of the novalog.. my doctor is pretty confusing and can't explain what to do. it took forever to even get my numbers into the 100's.. And only because I just decided to jump to 50! I know that might not sound good to everyone... but i didn't know what else to do and i seem to be resistant to the insulin.

anyhow, i have put on about 8 pounds in 2 months...even with the symlin.. but i'm not really sure i'm taking that right. I have been looking around and it seems some take the symlin an hour before meals, then the novalog when?

My dr said I should increase my lantus to 100? But since I gradually started increasing it, my overnighters have been over 200, and i was starting to see 140 regulary in the morning.

does anyone have any idea what I'm doing right or wrong? I am afraid to sleep because of worrying about the hypo event potentiality... who would know if something happened?

This is all so confusing.

Thanks for listening... (Comment this)

24 - .
PEOPLE HAVE TROUBLE REMEMBERING EVERYTHING THE DOC SAYS, SO LET ME RUN THROUGH A FEW BASICS, ALONG WITH SOME OF MY SYMLIN EXPERIENCES:

Symlin is not a type of insulin. It works with insulin in the body - they are a team. (Symlin is the synthetic version of the natural hormone amylin, which is made in the same cells as insulin).

Symlin should be "titrated", which is a fancy way of saying "do not start on a full dose". Your doc should carefully explain how he wants this done, including how to reduce your insulin dose. AMLN has a pre-printed instruction sheet the doc can give you (or you can find it on-line). I went on a half-dose for a few days (4) until the nausea was gone, then went to a full dose at 7 days.

I "fixed" my times and amounts of Symlin, then adjusted my insulin accordingly. The reason is that Symlin was unknown to my body when I started, but I had been using insulin for 15 years and was comfortable making adjustments to my insulin times and doses.

I made one major mistake - I started a serious diet when I started Symlin. I should have waited until I was on a normal dose of Symlin -and- my insulin was also about where it needed to be, then started the diet (a couple of weeks).

LET'S SEE IF ANYONE HAS QUESTIONS ABOUT THIS POST - IF NOT I WILL WRITE MORE IN A DAY OR TWO. (I am not a doc, but I have been on Symlin 5+ weeks and have had huge success with insulin reduction and weight loss. In addition, I need far less sleep, my energy level is up, and I feel great)!

The Babe (Comment this)

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Written by: Steph & Bill Quick at 2005/08/03 - 20:51:45

26 - is there anyone out there using symlin and on an insulin pump? If yes, how is the combination working for you? I've had type 1 diabetes for 39 years, dx'd at 7. I don't have any major complications, but could stand to lose 40 lbs.I've been on minimed pumps for 13 years. Even on the pump, (novolog,70-90 units/day), my a1c hasn't been lower than 8.1. Thought of trying symlin, but I don't go to an endo and my internist isn't up on all the "newer" treatments. If I suggest something, he'll research it and get back to me. (Comment this)

27 -
Pumper,

I doubt that any doc has that specific info yet. You may wish to call Amylin directly (800-349-8919) and just start asking questions. I assume that you will eventually find someone who will be helpful.

Symlin is for both T1 and T2. How you get your insulin (using a pump) should not be an issue. I suggest you actively pursue this with the goal of getting your A1c and weight down.

I am T2 for 25 years. Symlin has helped me reduce my weight 31# in 5 weeks while on a balanced diet. I have gone from 190 units of insulin a day to 60 a day. It is still too early to get my A1c checked, but my last reading before Symlin was 5.8. - I expect the next one to be slightly better. Read my comments (above) for more info.

The Babe
 (Comment this)

28 - Pumper, I too am on a pump and am currently trying to work out using symlin. It is working great the first few hours...it keeps my bs almost the same as before I ate, but I am having trouble about 3 hours after with pretty big spikes around 200. I actually have great control, but am still trying to drop my insulin amounts after I had my daughter. I use humalog in my pump and right now am not seeing any insulin decrease since I have the highs to cover, but am anxious to see my eno in a few weeks. Does anyon else have trouble with the spike a few hours after? Thanks, this is a great site and very helpful to read about this new drug.
Holly (Comment this)

29 -
I follow the Yahoo-Finance-AMLN message board closely. The following came from there and may be of interest (without my meds, I qualify in all 5 areas):

A diagnosis of "Metabolic Syndrome" (ICD-9 diagnosis code 277.7 ) is met when 3 or more of the following 5 criteria are present:

1.)Waist Circumference >40" (men) >35" (women)
2.)Triglycerides >150mg/dl
3.)HDL (good) Cholesterol 110mg/dl

There are probably more than 50 million Americans who "easily" meet these criteria and could be prescribed Symlin to treat this condition.

Around 85 percent of the worlds diabetics are Type 2. The likelyhood of developing diabetes rises as the pounds go on. Ninety percent (90%) of Type 2 diabetics are overweight. America and Britain have high rates of Type 2 diabetes but will be overtaken, if trends continue, by India and the Middle East..." (pg 27, Clinician's Pocket Guide to Diabetes).

The Babe

 (Comment this)

30 - Here are the other 2 items:

4.) Blood pressure > 130/85
5.) Fasting plasma glucose >110mg/dl

The Babe (Comment this)

31 - Holly,

Symlin has a 1/2 life of 48 minutes. Therefore, the effects of Symlin start wearing off in 2 - 3 hours, so your observation is "right on".

I have been working on this exact issue for the last few days - my own solution is this: each time I inject Symlin, I inject a small amount of Humalog (my own "index" for this is about 4 - 5 units when my control is good). The Humalog peaks in about 90 minutes, "knocking down" the peak in your blood sugar that is created by eating when you take Symlin.

I dislike doing this, but I have a goal of getting my average daily glucose tests to 105 or below, and I believe this system will achieve that.

FYI, an average glucose of 105 works out to an A1c of 5.5 - which is the top of the normal range for non-diabetics.

The Babe
 (Comment this)

32 - Babe, thanks for the reply...my control has actually been very good...my last A1c was 5.2 and I am still on my pregnancy levels (60-90 premeal, no higher than 120 2 hours after) so this spike is really throwing me a loop. Also, for me, humalog does peak after about an hour, so this high 3-4 hours later would not be helped by more humalog at meal times. I have been needing to bolus more to cover these highes and am not on any less insulin now than I was before. I have actually stopped taking most of my symlin because I don't like the highes. Does it get better the longer you take symlin? Maybe I just need to be patient and try to hang in there longer. :) thanks for all your info. (Comment this)

33 - is there a place where i can find info on how to take symlin properly? I really don't understand a lot of what you are talking about regarding half life and the timing of taking the stuff so you can get your numbers in 105's or lower regularly. I'm so confused by how to do all 3 of these medicines properly, and also 2000 mg of glucophage a day... Symlin, NovaLog, Lantus.... my dosages of symlin is 30units, novalog 50-60 units, lantus (last night was 80)... doctor suggests going to 100 units of lantus a night.. but what is the proper sequence.. do you do symlin 30 minuts before eating, novalog while eating? all at the same time? what if you can't take it while you eat.. is there a purpose to taking symlin if you've already eaten??? and then the lantus. is there a ratio to how much you take of that to the others? I'd really like to reduce my insulin and figure out how much to take.. but really i have no idea. i just found that 50 seems to work pretty good, and i take extra 10 if i had more carbs than normal. i had a hard time getting my numbers down when i started on the novalog... (june 10).. and I am absolutely lost.. and terrified that i'm gaining. Is there anyone out there who has experience with figuring this out? I can't really get a straight answer from the doctor... sometimes she seems confused! thanks again for listening, Laura (Comment this)

34 - Holly,

The spike at 3-4 hours does seem strange. It happens to me in the morning due to the "dawn phenemona", but at no other time during the day.

I suggest calling the AMLN "hotline" (800-349-8919).

I just checked my log. On Day 1, I started a serious (low carb) diet along with 10 units of Symlin four times a day and stayed there for 7 days. O on Day 8 I went to a full dose of 20 units of Symlin four times a day.

The time spent on 1/2 dose is referred to as "titration" and was an FDA requirement to reduce the possibility of serious hypoglycemia. The "feeling of fullnes" started immediately. Symlin also caused me some very minor nausea for four days, but overall I felt better than normal. My weight went down 5 pounds the first week - I assume that was reduced stomach content and reduced liquid retention - very typical when starting a diet.

On Day 8, when I went up to the full dose of Symlin, things started happening - FAST!! My average blood sugar went down, so my Humalog dose headed down - and went to zero on Day 12. (My evening Lantus held steady). My energy level went up substantially, and my sleep requirement went way down ... oh yeah, and I lost 8 more pounds in 7 days :>))

The Babe




The Babe (Comment this)

35 -
Justme,

I started Symlin seven weeks ago and have had GREAT success! Please read my note to Holly (above). I am very disciplined in my approach - including keeping a serious logbook, which is now on computer - the following is some info out of that log:

- Took glucose test, insulin, Symlin, and food @ 7 am, 11 am, 3 pm, and 7 pm. (Took another glucose test about 90 minutes after each time I ate).

- Prepared my food ahead of time and finished eating no longer than 10 minutes after taking Symlin.

- I started a serious diet on the first day but I now believe that was the wrong thing to do - about 2 weeks later would have been better.

Your doc is in the same boat as everyone else - she has no experience with Symlin since it is so new. I hope she gave you the handout on "Symlin startup" that was prepared by AMLN.

Also, I wrote a "Symlin startup" memo which you will find posted earlier in this blog.

The Babe

 (Comment this)

36 - I am very interested in Symlin, and I do think that it is appropriate to mention Byetta in the context of deciding which med to try. I went "off label" and started with Byetta three days ago, even though I am not taking any oral meds. I am on Novalog (using a pen, which is very nice) and Lantus. The reason I did not use Symlin is that my endo had NO information on it and couldn't find any while I sat in the exam room and he hunted around his office.

From the posts I have read here, I think that Symlin may be the better way for me - especially because you can choose the frequency with which you use it. But I will stick with what I have for now. Next endo visit is in October. I will continue to monitor this site so I can see what other people's experiences are; and that will be useful to report to the endo.

Judi (Comment this)

37 - Judi,

I have read of cases where people are using Byetta in lieu of Symlin - please keep in touch with your progress.

Educating the docs is a big issue, it will just take some time.

In case anyone is wondering, "off-label" is legal, it is just not what the drug was originally approved for by FDA. Docs have complete authority to use Byetta and Symlin as they see fit. I believe you will see growing use for weight loss in non-diabetics - once again, after the docs get some experience.

The Babe (Comment this)

38 - It does frighten me to think that docs will use these meds off label for non-diabetics. People are so desperate to lose weight, but use of these meds could cause hypos in non-diabetics. As diabetics, we know how a hypo feels and what to do. But other folks don't. And, hypos can be fatal. Pretty dangerous med all in the hope of meeting public approval and getting nagging doctors off your back for being fat. Believe it or not, there are worse fates. (Comment this)

39 -
Judi,

Symlin & Byetta are not insulin -and- do not cause hypoglycemia. Insulin can cause hypo.

There are clinical trials in progress at this time (AC-137) testing Symlin, without insulin, for weight loss in non-diabetics, at much higher doses than the "normal" amount I am currently using. The interim results from the trials are good.

In a couple of years, I expect to see Symlin approved by FDA for weight loss. The question in my mind is whether AMLN will be able to make Symlin fast enough. Hopefully the prescription forms will by then be made of recycled paper - I would hate to see forests cut down just to make all the scrip pads that will be needed!!

The Babe

PS - I am very glad you wrote your note on this subject. I have followed AMLN for years, and some knowledge that I take for granted has not yet been passed on to the docs
-or- the end users.

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40 -

I guess I am still not clear on how Byetta and Symlin work, but as I deal with one or the other, I'm sure I will learn. I am a BG testing fool - running through the test strips like mad right now.

As I move into Day 4 on Byetta, I am still thinking that Symlin may be better - if for nothing else but being able to split up the doses to deal with every bit of food I eat. Does symlin only work on dealing with the food you consume, and are you still having to cover such issues as dawn syndrome with short acting insulin. How about basal? I thought that both Byetta and Symlin were also supposed to help with "liver dumps" which I thought were somewhat related to dawn syndrome. A little bit of knowledge can sometimes create more misconceptions than no knowledge at all, I guess. (Comment this)

41 - I am a Type 1 for 38 years, & have been on a pump for 16 years, no complications.I started on Symlin 3 weeks ago and have been really happy with the results. For me the nausea has been mild, I have been increasing the dose gradually and today is the first time I'm up to the full dose of 10 units prior to each meal. I have lost 5 lbs., I would like to lose about 20 lbs. Eating less is easy as I feel very full after eating about half the usual amount. You have to be careful because you eat less this can contribute to low's. After meal highs have always been a problem for me, and that is where the Symlin is really having an effect. My highs have been reduced significantly. Before I would always have bg of 200+ at some point during the day, for the last 2 weeks I only had 2 over 190 (testing an average of 8 times/day) I have had a few lows but I'm working on getting the right balance. I have reduced my bolus's by about 30 % and I think I will have to cut back on my basal rate too. My average insulin per day has gone from 45 units to 36 units. My A1C's have been in the range of 6.8 to 7.5., but I think the next one will be much lower. (Comment this)

42 - Before I started using Symlin 4 weeks ago, I was a Type 1 diabetic who had to use about 75 units of Humalog insulin per day just to eat meals consisting completely of vegetables and protein. Even with almost total carbohydrate restriction and regular exercise, I still had terrible highs and lows, seemingly without pattern and gained about 15 pounds per year. After starting Symlin 4 weeks ago (60 units per day), the numbers have evened out somewhat, but I also do get those 3hour spikes that Holly was talking about if I try to add any kind of bread rice fruit or pasta to my diet. Holly, do you get these spikes if you eat only vegetables and protein at a meal? Does anyone take Symlin with cinnamon with any success? I lost 5 lbs early on, but haven't lost anything else. Is this plateau common? (Comment this)

43 -
Judi,

Symlin is the synthetic version of amylin. Amylin is a natural hormone made in the beta cells of the pancreas, which is the same place that the hormone insulin is made. They are a "team". When there is a shortage of insulin, there is usually a shortage of amylin. Try www.Symlin.com for more info. Also read the Abstract above (7/26).

Byetta is the synthetic version of the saliva of the Gila monster. The Gila monster eats 3 - 4 times a year and maintaings good glucose control. Since I do not use Byetta, I am not really aware of the action. Try www.Byetta.com for more info.

I test an average of ten times a day and hope to reduce that - I do it all on my left ring finger - it looks terrible!

I consider my basal insulin (Lantus) to be my primary insulin, with Humalog being only a "gap filler". I am trying to deal with the "dawn phenomena/liver dumps" with Humalog (short insulin) - my Symlin cannot handle it.

The Babe

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44 -
Sandy,

It sure sounds like you have your program "running right".

I believe that a full dose of Symlin is 20 x 4 (80 a day).

I consider the A1c to be the "gold standard" of all of the many tests that I take. Best of luck getting your's down to where you want it.

The Babe

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45 - Sandy,

You are becoming a celebrity! Someone posted your message on the Yahoo-Finance-AMLN site as an example of a person doing well on Symlin.

The Babe (Comment this)

46 -
END OF WEEK 6 - The Babe

I just completed my 6th week on Symlin. I will write some short posts covering various related subjects.

I am retired and have been Type 2 diabetic for 25 years. I set aside this summer to stay home and concentrate on using Symlin to improve my health and weight. I am doing this in a "lab" environment - anyone trying to match these results while working for a living will probably get frustrated. That being said, I hope my experience will be helpful to others considering or just starting on Symlin.

It may sound like these 6 weeks have gone perfectly, but that is not correct. I have done a lot of experimenting, made a lot of mistakes, and had a number of frustrations. Yesterday, Day 42, is the only day that I would call perfect, but it provides a "snapshot" of a good Symlin program.

Anyone is welcome to copy and distribute anything that I write - I am here to encourage and help other people improve their lives by using Symlin. My wife and I have owned some shares in Amylin (the company) for about 5 years. I receive no compensation for my "ramblings" and, in fact, I have never spoken with anyone from the company other than to get "help desk" information.

TIME - I started at 5:30 am on Monday, June 27. My first 6 weeks - 42 days - ended at 5:15 this morning, Monday 8 Aug, after I did my weekly "weigh-in".

Why end hte week just after the weekend? Because it reminds me not to "loosen up" on the weekend - the scale will be waiting for me on Monday morning!

The Babe

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47 -
END OF WEEK 6 - The Babe

BLOOD GLUCOSE - My goal is to keep my "daily average" sugar below 105. I am becoming of the opinion that it cannot be done with regularity, at least not until I lose a lot more weight.

A glucose of 105 equals an A1c of 5.5, which is the top of the normal range for non-diabetics.

Yesterday, Day 42, I averaged 102. However, I was "pushing the limits" with Humalog all day long. I had a minor low blood sugar event the night before and two the night following. That is ok for a "lab rat" (my wife's nickname for me) but you can't let that happen if you are working for a living.

My average for the week was 115. I find that to be sustainable in a "lab" environment.

I get two glucose "spikes" in the morning, not just one, and have not been able to control them.

Here are three notes that I keep on my computer log:

-The afternoon and evening before are important. Eat light.

-Try to hit a morning glucose of 80 - 100.

-Use extra Humalog the first dose in the morning to try to reduce the morning "spikes".

SPECIAL NOTE - During my first 5 - 10 days on Symlin, I expected my glucose to run high ... and it did. For me, high is far better than low.

The Babe




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48 - I've been on Symlin for a little less than two weeks now. I am type I, diagnosed some 25+ years ago and have been using a pump for 12 years. So far, the only annoyance I have found is that I really don't like taking injections after so many years of not taking them. When I first started the Symlin, I experienced some very mild nausea, but nothing I couldn't tolerate. I think the nausea is well worth the benefits of seeing the average on my blood meter drop from 180 to its current 135. I can't say that I have cut out half the insulin I was using, but I have cut back significantly, and that thrills my vain side. I've not encountered the appetite suppresant effect either. I've had several lows, which actually happened while I was eating! So I've adjusted my basal rates as well.

All in all, my experiences so far have been quite positive. Yesterday, for example, was my nephew's birthday. I had a piece of cake and a scoop of ice cream and 1 hour after, my blood was 77. Two hours after, I was up to 90, and three hours later, I was at 126, and stayed there through the night, until I awoke with a 46. Though I am being very anal retentive about my record keeping, I am thrilled with the results I have seen. (Comment this)

49 - END OF WEEK 6 - The Babe

GLUCOSE SPIKES - Most diabetics are familiar with the A1c test, which measures average blood glucose for about the last 90 days. Lesser known is the impact of "spikes" on your health. Let's assume that you run two glucose tests at the same times on separate days.

The first day results are 170 and 70, for an average glucose of 120.

The second day results are 130 and 110 for an average glucose of 120.

Both sets of tests would have the same effect on an A1c test (6.0), but the "spike" of 170 the first day will do more damage to your body than the high of 130 on the second day.

Symlin helps "flatten out the peaks".

My peak on Day 25 was 199 (average was 108). My peak on Day 31 was 142 (average was 108). Both days would be about 5.6 on the A1c test, but the peak of 199 on Day 25 did more damage to my body.

Symlin is taking me closer to my goal of 105 average glucose during a 90 day period(for an A1c of 5.5) - with the added feature of reducing my "peaks".

The Babe (Comment this)

50 -
END OF WEEK 6 - The Babe

NUTRITION & WEIGHT LOSS - A couple of years ago I started on a low-carb diet. It helped me keep my glucose down, and I actually hit an A1c of 5.8 in spring of 2005. My (already well above 250) weight went up another 7 - 10 pounds a year.

I started Symlin on 27 June 2005. At the same time I cut way back on food, although I stayed with the low carb stuff. By Day 21 I had lost 20 pounds, and my wife and (adult) kids were pushing me to talk to a nutritionist. Our medical insurance company has them available by phone, so I made "the call".

An hour on the phone got me started on a multi-vitamin, a calcium supplement, and the good ol' Exchange Diet at 1200 calories. Within a day I was eating a balanced diet - and never hungry. I also started hearing of the risks of losing weight too fast.

I again spoke with the nutritionist. To slow my weight loss, we revised my diet to 1500 calories and "fine-tuned it". As of Day 42 I have lost 30 pounds.
-----
I fix my own food and always finish eating within 10 minutes after injecting Symlin. This evening we were invited to dinner at a "class joint" - I ate before going and drank water while there. I am very serious about losing weight - I spent 64 years putting it on - a few months taking it off seems like a very good idea.

Prior to Symlin approval by FDA, my endo told me that I would not be able to lose weight without serious exercise because of the huge amount (190 units) of insulin I was using. My blood sugar control is now greatly improved, I have lost 30 pounds without exercise, and I am down to 80 units of insulin - all because of Symlin. It was impossible for me to do without this drug.

Because of serious diabetes-related leg problems, my feet and calves were swollen (edema). Some of the weight loss came from there.

If I were to do this Symlin "startup" again, I would spend 2 weeks getting used to the drug before starting a formal diet.

I will explain in a later post how Symlin makes the weight loss happen.

Symlin is primarily for improving diabetic blood glucose control, but taking advantage of the weight loss "side-effect" is smart - and doable! The Amylin AC-137 clinical trials - now in progress - create the very real possibilty that Symlin will be available for weight loss for non-diabetics in a couple of years.

The Babe


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