October 15, 2005

Symlin 3: Oct/Nov2005

This is the 18th in a series of discussion forums at Diabetes.Blog.Com, and is the mid-October/mid-November forum for discussions about Symlin.

This Symlin forum was activated to allow comments on October 15 and deactivated on November 14 to prevent more posts to this 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
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Posted by Bill the diabetesdoc at 00:00:00 | Permanent Link | Comments (84) |
Comments
1 2
1 - Third day on Symlin and it is working. Thanks for all the encourging emails. I have reduced my insulin by half and take 10u of symlin before each meal. I'm hardly able to eat as this new medicine fills me up. I've experienced hardly any nausea only a feeling of being too full - like I've eaten a large holiday dinner. Keeping check of my BG'S and the highest it's been in the last three days is 155, which is good compared to it running well over 200 after eating. I will keep all of you posted on how well I do as I am keeping a strict log.

Thanks to you all this maybe the drug to help us diabetics who have to take insulin but continue to gain weight. I do see some light at the end of the tunnel.

Thanks again. (Comment this)

Written by: Donna at 2005/10/15 - 14:05:20
2 - Well, I just visited the amylin web sight. When you go there (www.symlin.com), click on "Treating Smart with Symlin". It will then say some stuff about you need to be a health care professional. Anyway, click on yes you are. Then go to prescribing information. Download the prescribing information through acrobat reader. On Page 2 you have Clinical Pharmacology. Look at the graph. You have insulin and Amylin in a normal adult over a 24 hour period. What you see is spike in insulin and amylin at meals. However, you see that both hormones are working in the body over a 24 hour period. Now, you might ask, what is your point? Well, the way we are treating ourselves with Symlin currently is as if we tried to control our diabetes without a long acting insulin. What we are doing is injecting this hormone when we eat. Three hours later, the hormone is gone, no more in our blood stream. Therefore, blood sugar goes up and we are now left with uncontrolled highs. This medication will not work until it is formulated into a long acting medication. For those of you who have seen the miracle that Lantus has done for controlling blood sugar over NHP understands the message I am trying to convey.

The bottom line is that Symlin will not work until we have coverage over 24 hours. The graph clearly shows this is what is happening in a person without diabetes.

I still have not been able to control my blood sugar with symlin without doing exotic things such as taking insulin at a meal, then three hours later, then maybe a little more another hour after that. Bottom line, this product has been a headache. Just as if long acting insulin was no longer available and we tried to control our blood sugar only with rapid acting insulin.

Therefore, my question to all of you is: Are you able to control your blood sugar on Symlim? If so, what are you doing to deal with the highes hours after meals.

 (Comment this)

Written by: Daniel Miller at 2005/10/15 - 16:58:10
3 - I have been on Symlin for almost 3 months now and had my 1st A1C last week, I was happy to see my A1C was 6.7, down from 7.5 in July, which is about average for me. I have also lost 10 lbs. which I have been struggling to lose for a long time. So I am happy with the results, which I hope will continue. I'm Type 1 for 38 years, on a pump. Symlin has taken alot of trial & error, but I believe it is worth the effort. I had about a month of mild to moderate nausea, and have had several scary low's, which caused me to cut back on Symlin usage, but then I did not have as good control. I have gradually gotten back to using my prescribed full dose of 10u 3 times a day and it seem to be stabilizing. Yes, I have had some unexplained highs, but I think they are usually due to underestimating carbs & not wanting to get too low. Overall I would have to say my control is not perfect but considerably better with Symlin, and I think it will improve more with continued usage. (Comment this)

Written by: Sandy at 2005/10/15 - 22:34:38
4 - 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 2005/10/15 - 22:41:25
5 - Hi viv here been a diabetic 10 years ,on the pump for 6 years use novolog.just started symlin 1 week numbers been better don't see any weight loss didn't have any side affects only take it once a day how many units should be taken any info would be helpful.

viv (Comment this)

Written by: viv at 2005/10/16 - 03:09:14
6 - Whoops made a mistake this morning and ate a bowl of frosted mini wheats. I should have known better before eating and taking my 4u R & 34u NNP and 10 U symlin my sugar was 111 two hours after eating half a bowl my sugar was 305. So, I just can't eat what I want I still need to watch what I eat. I now know I can't eat sugar frosted mini wheats again. Anyway, after being on symlin four days this is the only high I've had, but at other meals I knew not to eat too many carbs.

 (Comment this)

Written by: Donna at 2005/10/16 - 15:41:59
7 - Hello. I am a Type 1 diabetic since age 13. I've had it for 7 years. I have been on the pump for 3 of those years. Or is it 4? Anyway, I have been on Symlin now for about almost 2 months. I started off at a lower dose and worked my way up to 10 units as an ending dose. I didn't use the bottle up in the suggested 28 days and when I bought my new bottle and injected myself I recieved bad bouts of nausea, cramping, and a headache. Almost like because it took me so long to use my first bottle that it lost some of it's effectiveness and so the new bottle was a little powerful to me. Is anyone else still getting sick from the Symlin after being on it for more then a month? I find that if I wait more then 15 minutes to eat I start to get queasy. On a more bright side........ I have cut my insulin (Humalog) in half and my blood sugars have been very good. I have lost 5 lbs or so and find that the Symlin greatly reduces my appetite. I am at a good weight now though, so I don't want to lose much more weight. I think that Symlin is absolutely wonderful.........other then getting sick to my stomach from it. With then coming out with stuff like this gives me hope that they will come out with a cure in the near future. That would be the BEST ofcourse. So, anyway, I would appreciate any info from fellow Type 1's and pumpers out there about your life with symlin! Thanks! - Marie (Comment this)

Written by: Marie Barry at 2005/10/17 - 20:16:08
8 - Hi, I am on my 4 th day of Symlin. Still taking 50 units of Lantus at bedtime and have decided to take my Humalog after meals depending on how much I eat. I started this when I was sick last week and that may not have been a good idea because my bgs have been horrible. I have only had 2 or 3 good readings since I started this. I hope that it will get better something has to help. If anyone has had any success with Symlin while they are sick with fever, please let me know. Thanks Lisa (Comment this)

Written by: Lisa at 2005/10/18 - 01:52:54
9 -
Sandy,

Symlin is not insulin and cannot cause low blood sugars. You problem is most likely in your insulin dosage.

The Babe (Comment this)

Written by: BioBabe at 2005/10/18 - 22:18:22
10 -
Daniel,

Symlin actually has a longer "half-life" than amylin. It works on me for about 3 hours.

I use Lantus (long acting) every evening.

I inject Symlin just prior to each meal and Humalog (short acting) just after each meal. I eat and use Symlin and Humalog 4 times a day at about 4 hour intervals.

The "sliding scale" I use for my Humalog varies with the time of day. It allows extra Humalog during the "dawn phenomon" and also extra Humalog after my main meal, which is at about 3 pm.

The Babe

 (Comment this)

Written by: BioBabe at 2005/10/18 - 22:32:30
11 -
Viv,

Your doc should have instructed you better on using Symlin. Here is info from the sheet my doc gave me - it comes from Amylin, the company that makes Symlin.

1) Take Symlin just prior to each meal (typically 3 - 4 times a day). Each meal must have 250 calories or 30 grams of carbs.

2) Initial dose 10 u-100 units per meal. Three days after any nausea disappears, move up slowly to 20 units a day.

Initially reduce you mealtime (short) insulin by half then adjust as needed.

The Babe

 (Comment this)

Written by: BioBabe at 2005/10/18 - 23:10:06
12 - I'm on day 5 of using Symlin and found out that my insurance company will not cover the cost. I'm doing okay so far, up to 10 units/meal and have not felt any side effects. I've called my endo and she told me that we will see how I do until my appointment next week and if my bs are in better control she will fight for my coverage. Does anyone else have this problem? (Comment this)

Written by: Mari at 2005/10/19 - 05:03:27
13 - Mari,
Yes, I also had a problem with my HMO. First they wouldn;t cover it at all. Then they decided to cover two vials a month with my co-payment being $ 100. Yes, a hundred dollars a month. Drug had a list prive of $ 98 per vial.
I have been on symlin for about 3 weeks and will see doc in about four more weeks to decide whether or not to continue on it.
I guess this manufacturer doesn;t have the clout of other drug makers to fight for a lower co=payment. Obviously, this will cut into their sales. Perhaps a bunch of us should send e-mails to the manufacturer and tell them it is THEIR best interests to put some pressure on the insurance companies. (Comment this)

Written by: lou evan at 2005/10/19 - 14:39:03
14 - I had no problem with coverage-my insurance is Premera/Blue-Cross and I purchase mail-order from Medco. It is not a generic so my co-pay is $35. (Comment this)

Written by: sunny at 2005/10/19 - 15:26:02
15 - 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 2005/10/19 - 23:22:07
16 - I stuck with Symlin for three weeks, ending about a week ago. I quit because of the side effect it has on me - diarrhea - every time I inject it. I'm going to try it again at the lowest dose, twice a day, for a week. After that I'm going to give up, even though it really helps with the high sugar peaks (and mine gets into the 300's on a regualar basis.)

I'm worried that it could have gluten in it, which is something I have to avoid because of celiac disease. So not only is it good for me to do the low-carb diet, but I can't have wheat, rye, barley, and other grains anyway. The doc says it doesn't, but the company gives a legalese statement of having "no added gluten." (IMHO, this means they don't add any *more* to the finished product.) (Comment this)

Written by: Courtney at 2005/10/21 - 01:55:11
17 - I've had insulin-dependent diabetes for 29 years, by the way. I'd really like to stay on Symlin, but diarrhea is completely exhausting. I expect to hear more complaints about that side effect in the next year or so. (Comment this)

Written by: Courtney at 2005/10/21 - 01:57:54
18 - hello everyone! I'm 20 yrs old have had Type 1 for 19 yrs. I'm very active biking running weightlifting etc. I just started symlin yesterday. I would like some advice from someone else my adge/activity level who uses symlin. my a1cs have been in the upper 6's and I would like to drop under 6, so I thought I'd give symlin a try. I would really appreciate any advice possible relating to symlin and excercise. Thanks! (Comment this)

Written by: ben at 2005/10/21 - 03:23:57
19 - I've been on Symlin since June.

Since June, I lost 30 pounds -- the primary reason I went on Symlin.

I have gone from 120 units of insulin a day to less than 40.

I am on the Type 2 dosing protocol since my primary problem is insulin resistance. Here's what I've found useful:

If I can dose about 30 minutes before meals, I have a better match in blood sugars (it eliminates the spike). My theory is doing the early dosing makes the Symlin curve match the insulin and food curve better.

I find that the Symlin is more effective if I am moderately active around meal time. Occasionally it can be too effective. Again, resistance is probably a factor.

The only thing I would change about Symlin, is to put it in a pen. (Comment this)

Written by: Kathleen Weaver at 2005/10/21 - 04:10:42
20 -
Kathy,

Amylin announced a couple of months ago that Symlin will be available in a pen, but no date has yet been set to the best of my knowledge.

Some people in the Symlin clinical trials used the pen, but the reason for it coming to market in vials is not information that is available to us mere mortals.

The Babe
 (Comment this)

Written by: BioBabe at 2005/10/21 - 14:48:06
21 - Sunny, Nobagholder, Daniel and others,

As I've mentioned, I'm a Type 1 of 41 years and have been on Symlin for 50 days now. Unfortunately, no majic yet. I continue to struggle with high BG while using Symlin and am getting hungrier by the day. Well, just met with my endo today and will be switching to Byetta. My endo mentioned that Byetta might work better since I may have some insulin resistance. According to my doc, results with Byetta (yes, even for Type 1's) seem to be better. Also, I will only have to take it twice a day.

Thanks to everyone for your posts and sharing your experiences w/Symlin. I will continue to check back on this blog to read how everyone is doing. (Comment this)

Written by: Deb at 2005/10/22 - 03:13:54
22 - Sunny & Others,
This is my first trip to this discussion forum. Please tell more about why Smylin wasn't working for you! I've had type 1 x 27 years myself, last A1c was 6.9%, am about 40 pounds overweight,wear a pump, and have been on and off Smylin (10 u) twice. I have tried everything to get it to work, but it doesn't seem to do anything but sting terribly when I inject it and make my stomach feel a little queezy. I keep it either in the fridge or my cool pack and take it 30-60 minutes before a meal. Each and every time, however, although I'd originally reduced my meal bolus by 50% (but then had to increase to only 25%), my blood sugar goes way up. I really want Smylin to work for me, but it seems as though I'm only injecting cold water. My endo and educator don't know what to think or what to suggest.
 (Comment this)

Written by: Jana at 2005/10/22 - 19:15:25
23 -
Jana,

1) If you keep Symlin in the fridge, it is probably stinging because it is cold when you inject. The literature on Symlin indicates that it is ok to keep at room temp for 28 days.

2) Using Symlin 60 minutes prior to eating is outside the Symlin guidelines. I prepare my food, inject Symlin, then FINISH eating within 10 minutes of injecting Symlin. Your queasiness is probably the "feeling of fullness" kicking in because you are injecting to early before eating.

3) My primary blood sugar control is from my long-acting and short-acting insulin, not Symlin. Insulin dosing may be the cause of your high blood sugars.

Always remember that Symlin is not a form of insulin.

The Babe
 (Comment this)

Written by: BioBabe at 2005/10/22 - 21:02:33
24 -
Courtney,

Ref: Diarrhea

I hope someone from Amylin is monitoring this blog and will look into this diarrhea issue.

Prior to starting Symlin I was on a low-carb diet for years, had occasional "diarrhea lite", and I was gaining weight.

I started Symlin and, for a while, had less "diarrhea lite" while on the low-carb diet - but I had cut back a lot on my food quantity and was losing weight quickly.

A nutritionist then convinced me to go to a "balanced diet" and the diarrhea stopped ... and the weight loss stopped ... but my energy level went up substantially and the "magic" kicked in at about 2 - 3 months.

The last few weeks I have been travelling often, including a lot of restaurant food. I trended back to the low-carb style of eating - and the "diarrhea-lite" started again. My energy level has trended down, and the "magic" is not what it once was.

Does Symlin not do well with a low-carb, more-fat diet? ... or? ... I dunno.

The Babe



 (Comment this)

Written by: BioBabe at 2005/10/22 - 21:34:09
25 - Jana,
When I was using symlin the same thing happened to me when injecting. More often than not, it stung as I injected it. And, my symlin was at room temp too. Maybe that is just a side effect for some of us.
Also, I did as Babe suggested. I injected and then ate right away. Nausea was not an issue for me at all except once when I vomitted on day 15. Hope you feel better soon. (Comment this)

Written by: Deb at 2005/10/22 - 22:25:27
26 - Babe:
Don't assume anyone from any pharmaceutical company is monitoring this blog (or any other internet website).

If anyone has an adverse reaction to any medication, especially one that's not in the label, or that's severe enough to land in a hospital, please be sure that either you or your doc reports it to the manufacturer or to the FDA. (Comment this)

Written by: Bill the diabetesdoc at 2005/10/22 - 23:05:05
27 - 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 2005/10/25 - 22:24:58
28 - Day 14 of symlin,just went to 10u yesterday and having diarrhea in AM 1hr after meal. Also having that burning on injection of room temp symlin, not always but often, injecting slower seems to help. I think symlin is really helpful because it making me pay attention to my food intake, it does make me feel full, in fact if I eat to much have had some acid indigestion. Fine tuning my insulin with endo which I needed to do anyway. I am eating less and have lost 2 lbs. Babe, I think you have a good idea in eating 4 meals, I might try that. Continuing to try to find balance. (Comment this)

Written by: BJ at 2005/10/26 - 02:03:09
29 - Who ever posted early that Symlin can't cause low blood sugars is WRONG. It can. It did today.

Read my post at http://www.kweaver.org/archives/2005/10/#001753

I still haven't figured out what happened, but basically I couldn't maintain a reasonable blood sugar, wasn't doing insulin, only Symlin. (Comment this)

Written by: Kathleen Weaver at 2005/10/26 - 04:51:17
30 -
Kathleen,

Symlin is not insulin and cannot cause hypoglycemia unless insulin is also present.

I suggest that you call Amylin and talk to someone there. You may have had what is called an "adverse event" which would need to be reported to FDA.

The Babe
 (Comment this)

Written by: BioBabe at 2005/10/26 - 16:56:11
31 - I have been asked to go through an 8 month study while on Lantus--have been on three months and they will intoduce Symlin into my system. I will be monotured weekly then bi weekly until We've found the balance--then--on for the next eight months. The Symalin will be paid by the study--have any of you participated? Do you think it will be worth it. Still trying to control my BS's.
Marla (Comment this)

Written by: Marla at 2005/10/26 - 19:25:20
32 - Hi Babe, hi BJ,

Thanks for the comments about the diarrhea side effect. You might be interested that it IS LISTED as an effect of OVERDOSE.

BJ, if you keep having it, please call Amylin like I did. They need to know. By any chance, do you have celiac disease or a sensitivity to wheat/ gluten?

Courtney (Comment this)

Written by: Courtney at 2005/10/27 - 14:48:05
33 - I'm a 45 year old diabetic female who has been on the pump for 10+ years. Started Symlin about 4 weeks ago - will get up to the full dose beginning 10-30. Have experienced the nausea on and off for 3 weeks - seems to be better this week. My A1C's are high - in the 8-9 range. We have tried everything. I've had several days where the BS are great with the Symlin but I don't seem to see a drop until about 3 hours after a meal - is that normal or should it be sooner. Still have a lot of highs as I've been having reactions the past couple of days so I'm rebounding. Would appreciate any info from other pump users on symlin. Do you just skip a dose if you are eating less than 30 carbs for a meal? (Comment this)

Written by: Kelli Joseph at 2005/10/27 - 18:02:17
34 - I have been on Symlin since July 6th. I had been having problems with diarrhea before starting Symlin, but the symptoms became worse after initiating Symlin injections. One time I had a major reaction with explosive diarrhea and vomiting. I went to an internist who ordered zillions of stool samples. All were normal. Then I went to one of my naturopathic physicians (licensed and well respected in Oregon where I reside) and she drew blood to test for food allergies, both immediate reactions and the type that are delayed by three days or so. I've eliminated those foods and all is well. I knew I had celiac didease/gluten intolerance, but I also have problems with eggs, dairy, kidney and white beans, filberts, sesame, and blueberries.
Since I am a vegetarian, these new allergies were not welcome news. However, by eliminating the allergens my chronic, frequent diarrhea has cleared up. So it is worth it for me. No more IVs and Gatorade! Sometimes, after an injection, I still feel as if I am going to have diarrhea, but it doesn't happen. I do believe there is a connection between Symlin and diarrhea and it will become more evident as the number of users increase over time. (Comment this)

Written by: Leslie at 2005/10/27 - 20:29:17
35 - I am starting to see a lot of diarrhea references on here now. I have it quite frequently with the symlin, espcially after lunch. I am not on any short acting insulin, only N, am and pm. It has been so bad before that I get 1/4 way through my meal and I have to literally run. It isn't only once, it is 4+ times sometimes, and then I am so tired, sick, and disgusted that I can't eat. I am back to feeling full again. I am still not losing anymore weight though. I love my symlin and I would probably go nuts if someone tried to take it from me...so I suppose that is why I am dealing with the diarrhea. My blood sugars are still pretty good. I went a couple of days with highs constantly regardless of what I ate. I do think the highs corresponded with my menstrual cycle though, which is something I never saw pre-symlin...but then again, I was never controlled pre-symlin and now I am. Well, I hope everyone is doing well.

JM (Comment this)

Written by: Jessica Miller at 2005/10/28 - 06:44:37
36 - Hi Courtney,
Not positive the diarrhea is from symlin. I usually only get occasionally after the AM dose, but not always. Have been on 10U for 5 days now. Maybe it will stop soon.

Anyone else having the burning, stinging on injection? That is pretty constant for me. Will try to call the company next week. I should start a new vial by Monday and will see if it persists.

My BS have been all over the place this week, since I started 10U. It hasn't been my most routine week though. Will keep trying. (Comment this)

Written by: BJ at 2005/10/30 - 02:49:01
37 - BJ - Haven't had the diarrhea but have had the stinging at injection once in ahwile - not every time. My BS have also been everywhere! I started the 10U yesterday and have had nausea both days. Seems whenever I have upped my dose I get the nausea back for a couple of days. The BS don't get a chance to stabilize as I've also been having some lows that throw me off by rebounding. Hopefully now that I'm up to 10U I will see some consistant results. (Comment this)

Written by: Kelli J at 2005/10/30 - 21:28:06
38 - Leslie, I have celiac disease too. I was afraid that Symlin might have gluten, but if you aren't having diarrhea now, maybe I'll cut out dairy for a while and see if that takes care of mine! Please let me know if it comes back (take out the "EMAIL_IS_") from the email address:
EMAIL_IS_msmcclellan@yahoo.com (Comment this)

Written by: Courtney at 2005/11/01 - 00:09:38
39 - For those that are having stinging on injection, I've noticed that the vial has a tough opening for the syringe to puncture. So consider -if you haven't already- using a new syringe each time.
Courtney (Comment this)

Written by: Courtney at 2005/11/01 - 00:12:05
40 - Anyone who is not having stinging on injection, what exactly is your protocol for drawing up? Courtney, I too, found the rubber stopper to be a bit harder than my insulin vials, and at first I think I was dulling my needles. I use a new one each time. I am being more careful in inserting the needle into the stopper and I think I am dulling the needle less, but the burning is pretty consistant. I am using a 3/10 inch, 31 guage ultra fine needle for symlin, compared with a 1/2 inch 30 guage for insulin. Also, I was told by my educator that BS can be higher the week we women are pre-menstral as I was. So hoping this week will have better BS. I definately think the Symlin is helping, ie with feeling of fullness, sometimes more sublte than others. (Comment this)

Written by: BJ at 2005/11/01 - 09:09:13
41 - BJ,
have you tried a *longer* syringe? Being farther from the skin, perhaps that would also be farther from the sensitive area just beneath your skin. just as a test, you might want to go to your nearby pharmacy and see if they have ONE INCH syringes that are still 31 gauge!

you never know...
Courtney (Comment this)

Written by: Courtney at 2005/11/01 - 14:18:50
42 - I've been on symlin for about 5 weeks now, and my results are mixed. Yes, it stems the rise after the meal and I use half the meal insulin, but if I don't inject the other half of the meal insulin at 2 hours, I will spike at 3 and 4 hours. So I'm using the same amount of insulin.

Also, after about the first week, I noticed a feeling of fullness, but it's gone, and I actually feel like I"m gaining weight, not losing it. I don't own a scale so won't know for sure until next week when I go back to the endo's office, but it sure seems like weight gain. I don't necessarly care if I don't lose weight as that is not my issue (though all my doctors want me to lose weight) in the sense that I don't diet for weight loss, but I certainly don't want to gain weight. Weight gain might be because with the symlin I've added some things back into my eating that I had been avoiding.

I'm not sure I'll stick with it. It's at my most expensive co-pay, $50 per month with no ability to use the mail away, and as I'm on an insulin pump, I hate having to do injections. Plus, I'm not at all sure my control is any better than it was before. A new a1c will tell, I suppose. I had gotten pretty good at dosing my insulin.

I think maybe this first generation symlin needs to be fine tuned. It seems like it would be better if it lasted longer in the system.

Stacey (Comment this)

Written by: Stacey at 2005/11/01 - 20:16:47
43 - I am a 50 year old and have had type 1 diabetes for 43 years now. I am on a pump, disabled and like 40 lbs or more overweight. Since starting Symlin, I have lost 16 lbs, am not constantly obcessing over food and have my life back. I use the Square wave or Dual wave bolus feature on my pump. I inject the Symlin right before I eat, injecting Symlin and Byetta closer to a meal helps with the nausea and then half my regular bolus amount and give it over 30-60 minutes. The Symlin works right away and the insulin dose helps to keep the sugars down after meals. I eat 45 Grams of carbs or less per meal and if I do everything right, measure and bolus according to what I eat and stay away from high fat and high carb meals, I do great. I do have some high's after a meal, usually when I have to guess on the carbs. The only lows have been if I eat nothing between breakfast and dinner which does happen as I am not hungry. I can start a meal famished and a few bites into it, am so full I have to stop so I must be careful about bolusing on what I will actually eat, sometimes bolusing right after a meal.
Good luck to you all on Symlin, it is trail and error everyday as is diabetes and insulin. Someone complained that unless the Symlin was long acting it would not cover the high's, well, I bet it's not the Symlin, you are probably snacking all night after your last "meal", for every 30 grams of carbs, you are supposed to take Symlin is what I was told. 30 grams is the minimum number to have but if you eat say chips with 45 grams of carbs, you should take another shot. I too will be happy to see it in a pen, much easier.

I feel like an old pro now, my last A1C was 5.5 so if the next one is better still, I will be dancing.
 (Comment this)

Written by: Laura Smith at 2005/11/01 - 23:41:21
44 - I am finding also that it may lower my blood sugar at the 2-3 hour mark after a meal, but you have to be careful on what your snack may be as it could jump back up. Since I have been on the 10 units the nausea is letting up - first 3 days was pretty strong. Now I seem to be really tired - anyone else experiencing this? Still having some reactions so maybe the rebounding is wearing me out. (Comment this)

Written by: Kelli J at 2005/11/02 - 03:49:27
45 - I am a diabetic of 20 years, on the pump for 7, have celiac and thryroid disease. I will be on symlin as soon as I get my thyroid levels down. I spoke w/ a nurse from Amylin and they spoke the the chemists re gluten in symlin. They said there was no gluten in it. Overall would you guys recommend Symlin? The nurse told me if insulin and symlin are mixed the crystalize. I know you are not suppose to, but has anyone tried it? Thanks. (Comment this)

Written by: Alicia Pollan at 2005/11/02 - 04:34:42
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Alicia,

Symlin is a "next-generation, first-in-class" diabetic drug that has produced great results for a lot of people, including me. I have read some posts on this blog about people not having good results. It often appears to be because they are not following the rules when starting, or did not learn the rules in the first place.

Symlin is not an "easy" drug to use - if you go on it, you need to be serious about it.

The answer to your "mixing" question is yes - and - no. Some people have successfully mixed insulin and Symlin even though the literature says don't do it. The crystallization comment relates to the difference in pH between Symlin and insulin. (You will actually see white crystals on the top of your Symlin vial after using it a few times. There are no such crystals on insulin vials).

Since you are just starting Symlin, play by the rules. There will be plenty of time after you get past any nausea, go to your full dose, etc. to experiment with things such as "mixing".

One other suggestion - if you plan to go on a serious diet with Symlin, wait until things are pretty well stabilized (1-2 weeks?) before starting the diet. I went on a serious diet the day I went on Symlin. It was successful, but difficult.

The Babe

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Written by: BioBabe at 2005/11/02 - 13:23:16
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To all,

I have been a shareholder in Amylin for several years and have followed Symlin since well before it's appearance at FDA. I have been using Symlin since 27 June 05. Several weeks ago I posted on this blog a series of "lessons learned".

Since there are now a lot of new Symlin users reading this blog, I will cut & paste some of that info to this blog during the next few days.

The Babe
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Written by: BioBabe at 2005/11/02 - 13:30:49
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LESSONS LEARNED

Symlin is not insulin and Symlin cannot cause low blood sugars. It is necessary, however, to reduce insulin when using Symlin to avoid low blood sugar. This process is called "titration" and should be established by your doctor. He should give you a pre-printed form from Amylin that let's him "fill in the blanks" on quantities, etc.

Symlin actually has a longer "half-life" than amylin (the natural hormone that is the basis for Symlin). It works on me for about 3 hours.

Amylin has plans to produce Symlin in a "pen". No date has been set for availability.

The Babe
 (Comment this)

Written by: BioBabe at 2005/11/02 - 13:45:06
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ABOUT "THE BABE"

This post is to address any credibility issues that may arise concerning my posts.

I am a retired 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.

I started Symlin on 27 June. I have been diabetic for 26 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.

My agreement with my endo allows me the freedom to adjust my insulin, my diet, and my Symlin schedule as needed.

The Babe
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Written by: BioBabe at 2005/11/02 - 14:06:54
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THINGS LEARNED ALONG THE WAY

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!!!!
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Clinical Implications of Amylin and Amylin Deficiency

Davida F. Kruger, MSN, RN, CS, CDE

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.

The Babe

 (Comment this)

Written by: BioBabe at 2005/11/02 - 14:17:52
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