February 15, 2006

Symlin 7: Feb/Mar06

This is the 33rd in a series of discussion forums at Diabetes.Blog.Com, and is the mid-February/mid-March forum for discussions about Symlin. It is now closed to additional comments.

This Symlin forum was activated to allow comments on February 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
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Posted by Bill the diabetesdoc at 00:00:00 | Permanent Link | Comments (71) |
Comments
1 2
1 - Shelly,
I have been testing 8-12 times a day for YEARS…..I guess I don’t ever imagine Ill stop! As a general rule I test when I wake up, before and after each meal, bedtime, and in the middle of the night, so 8 or 9 times a day…..and that doesn’t include if I exercise (before, during, after, 30 min post, 1 hr post)

Deb,
I think your idea concerning post exercise spikes is pretty close to right on when it comes to me. I did already talk to my doctor about going up to 15 u of symlin and right now she is more comfortable with 10, especially since, even though Im not losing weight, that certainly wasn’t our goal, and my blood sugars have been really good, with my only real problem being my post exercise spike.

Laura,
I also determine my own insulin to carb ratios per meal and also my own basals. My doctor takes a weekly look at my sugars, but usually by the time they get the blood sugars Ive already spotted any trends and adjusted on my own. I believe that all diabetics can learn to get a good feel for their body and their diabetes and may be better suited to make those adjustments if they are comfortable with it. At times, my doctor and CDE will see things I either don’t WANT to see or things for some reason I just didn’t catch on to. Having that extra set of eyes and fresh set of ideas is helpful.

Joe,
My pre symlin carb/insulin ratio was 8/1. When I started symlin I started all ratios at 16/1. Now my breakfast is 11/1 (DW 90/10 over an hour), My lunch is 13/1 (normal), and my dinner is 14/1 (DW 40/60 over an hour). I need a lot less insulin per carb as I go through the day than I do in the morning. (Comment this)

Written by: Sarah at 2006/02/15 - 12:38:39
2 - Hi again,

I haven't written in a bit, but have had a few questions come up with Symlin I thought I'd throw out there. To refresh - I'm a 30yr. old type 1 (for 14 years) and have been on symlin for 4.5 weeks. I've had some great success with keeping my blood sugars stable throughout the day, and am surprised at how suppressed my appetite is. I lost 8 pounds in four weeks. I've never been overweight - so 8 pounds is quite a loss for me! I'm 5'9" and a size 8...but if the weight loss continues, I may soon be smaller. (fingers crossed!) My big question is this - how do you get rid of this nausea? Doctor said it goes away in virutally everyone, but 4.5 weeks later, I'm still just as nauseated after every sylmin shot as I was four weeks ago. Actually, my first week, I had nearly no nausea at all. But it has built since then. Has anyone tried taking Ginger supplements or anything like that to help? I don't know why it's hitting me so hard as I've read and heard that it should already be gone by now.

My second question on Symlin is directed to The Babe - or any doctor on this site who might know this - as I mentioned in a previous post, I'm a television producer and report national health news stories. I know that Symlin is in studies right now for people who are overweight (and not diabetic). I'd love to do a TV story on this, but can't seem to find out where the studies are being conducted. I travel the country and can do the story anywhere - do you know in what cities and at what institutions these studies are being conducted? (My next shoot is in Chicago, so that would be my first choice!) I'll keep searching on my own, but thought I might get a faster answer if I asked you guys!

Hope all is well with everyone in the Symlin world... (Comment this)

Written by: Stacie O. at 2006/02/15 - 18:20:36
3 -
Stacie,

The AC-137 Symlin obesity clinical studies are probably managed out of the California headquarters of Amylin. If you will call them at 1-800-330-7647, I am sure they will assist with the background info needed and also put you in contact with the one or more doctors at one of the several test centers around the country. These are often individual docs in private practice, but sometimes a medical center is involved.

All clinical testing follows a very rigid "protocol" to insure the the proper patients are in the study and the correct information is recorded.

One of the most interesting parts of the process is a job called CRA (Clinical Research Associate). These are the people (generally RNs) who travel from the study headquarters to the various study sites around the country. They are responsible for making sure the protocol is followed and the paperwork is right which, of course, is critical for submission of a NDA (New Drug Application) to the FDA.

Although Symlin is now an approved drug, it will probably have to go through the same FDA procedure as a new drug to be approved for a new use such as obesity ... hence the 2 to 4 year time frame I mentioned earlier. (There are lot of words used to describe the FDA, but "fast" is not one of them).

The Babe

 (Comment this)

Written by: BioBabe_ISV at 2006/02/15 - 19:21:50
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 2006/02/18 - 10:35:29
5 -
FROM A DIABETES MONITOR AD (The ad also shows a very good chart comparing the A1c test and the results from your bs testing - look it up!! The Babe)

How can I find out what my average blood glucose is?
Ask your health care provider to do an A1c test. This blood test shows the average amount of glucose in your blood during the past 2 to 3 months. Have this test done at least twice a year. If your A1C result is not as good as it should be, your health care provider will do this test more often to see if it is improving as your treatment changes. Your A1C result plus your blood glucose meter results can show whether your blood glucose is under control.

Aim for a result below 7 percent. If your A1C test result is below 7 percent, then your blood glucose is in a desirable range and your diabetes treatment plan is working. The lower your A1C is, the lower your chance of getting eye, nerve, and kidney damage.

If your test result is more than 8 percent, you need a change in your diabetes plan. Your health care team can help you decide what part of your plan to change. You may need to change your meal plan, your diabetes medicines, or your exercise plan.



 (Comment this)

Written by: BioBabe_ISV at 2006/02/18 - 22:31:06
6 - Good day all!

Anyone here ever have to stop the Symlin and then start back up? If so, did you start the titration all over again or were you able to start at the stopped levels?

I only ask because my mail order pharmacy (don't get me started!) seems to have a problem with the symlin script every time I send it in. It's been 3 weeks and I'm almost out of my last bottle.

I've cut back from 15 units to 10 units and now to just 2 shots instead of 3 a day to try and stretch the symlin.

Any experience or advice would be greatly appreciated. (Comment this)

Written by: Deb D. at 2006/02/19 - 14:32:27
7 -
To all,

The following is a technical description of Symlin that I copied from the Yahoo-Finance-Symlin message board. I am an engineer, but I have no interest in understanding this; however, some of y'all might be interested.

SYMLIN (pramlintide acetate) Injection is an antihyperglycemic drug for use in patients with diabetes treated with insulin. Pramlintide is a synthetic analog of human amylin, a naturally occurring neuroendocrine hormone synthesized by pancreatic beta cells that contributes to glucose control during the postprandial period. Pramlintide is provided as an acetate salt of the synthetic 37-amino acid polypeptide, which differs in amino acid sequence from human amylin by replacement with proline at positions 25 (alanine), 28 (serine), and 29 (serine). The structural formula of pramlintide acetate is as shown:

Lys-Cys-Asn-Thr-Ala-Thr-Cys-Ala-Thr-Gln-Arg-Leu-Ala-Asn-Phe- Leu-Val-His-Ser-Ser-Asn-Asn-Phe-Gly-Pro-Ile-Leu-Pro-Pro-Thr- Asn-Val-Gly-Ser-Asn-Thr-Tyr-NH2 acetate (salt) with a disulfide bridge between the two Cys residues.

Pramlintide acetate is a white powder that has a molecular formula of C171H267N51O53S2· x C2H4O2 (3< x <8); the molecular weight is 3949.4. Pramlintide acetate is soluble in water.

SYMLIN is formulated as a clear, isotonic, sterile solution for subcutaneous (SC) administration. SYMLIN vials contain 0.6 mg/mL of pramlintide (as acetate), 2.25 mg/mL of metacresol as a preservative, D-mannitol as a tonicity modifier, and acetic acid and sodium acetate as pH modifiers. SYMLIN has a pH of approximately 4.0.

!!!!!!!!!!!!!!!!!SO NOW YOU KNOW!!!!!!!!!!!!!!!!!!!!!!

The Babe

PS - The white stuff that forms on top of the vial after you prepare a few injections is a function of the pH being about 4. Water is neutral and is 7. The technical meaning of pH is "hydrogen ion indicator", which is also some very forgettable information.
 (Comment this)

Written by: BioBabe_ISV at 2006/02/19 - 22:11:56
8 - deb d: through the titration period of symlin i had to stop a couple of times as my blood sugars would start to scatter all over and i would revamp and restart the symlin. no, i did not have to restart the titration at the beginning. i just picked up where i had left off. i did not seem to have any problems.

jill (Comment this)

Written by: jill at 2006/02/20 - 05:50:30
9 - Hi all,

Still having some ups and downs with the Symlin but it seems to be going smoother now... One thing I have found is that I don't need to "treat" (have juice or glucose tablets) after meals unless I'm less than 60. For example today, 2 hours after my Symlin and breakfast, I was 68. I didn't feel like I was dropping so I didn't treat. 45 minutes later I was 68 and still didn't treat. Now, approx. 4 hours after Symlin and breakfast, I'm 75. What do you all think? If I'm feeling ok and not dropping, you think it's ok to stay that low? I figure it's probably good for my body as thats what non-diabetics blood sugar is... Thanks! (Comment this)

Written by: Megan at 2006/02/20 - 18:39:54
10 - Thanks Jill, that makes me feel better. Hopefully, the doctor will fax back a reply soon (yeah, right!). (Comment this)

Written by: Deb D. at 2006/02/20 - 19:37:04
11 - Megan,
If I am in my sixties and I know I am not going to be that active then I won’t treat. I don’t feel like my blood sugar is low in my sixties so I won’t. If I know that I am going to be active then I will go ahead and treat to try and avoid a low. That works pretty well for me.

Ive been on symlin now for five weeks. As Ive mentioned previously I don’t have as much of the full feeling with the symlin. Noting that, I don’t snack or feel hungry in the 3 to 4 hours after I dose the symlin so perhaps the feeling is less pronounced than it initially was. I am going to start taking the symlin 3-4 hours post dinner with a snack because Ive noticed that I will really graze at night and I end up snacking quite a bit at night, which could be one reason that I haven’t lost weight on symlin. Im going to start that tonight and we’ll see how it goes.. (Comment this)

Written by: Sarah at 2006/02/21 - 11:40:00
12 - Miracles still do happen. My doctor faxed back the info. on Monday to the pharmacy and they overnighted the symlin. Now it's back to full dose tomorrow. Good thing too since the munchies were hitting me full force over the weekend.

Megan, I agree with Sarah. 60 is at the low end of normal, so unless you are going to be physically active, I wouldn't treat. One caution, however, if you don't feel your lows until you are dangerously low, then you might want to treat on a minimal basis, just to keep from slipping. (Comment this)

Written by: Deb D. at 2006/02/21 - 21:55:47
13 - Megan,
My endo warned me about neuroglycopenia which is caused caused when your body gets too used to being low and eventually you don't feel the real lows and can black out or not wake up. I wouldn't want to not feel low at 60, which sometimes I don't. But I always treat. (Comment this)

Written by: Becca at 2006/02/21 - 21:58:35
14 - 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 2006/02/23 - 22:58:45
15 - === off-topic comment ===
In response to a request, I've opened a new Discussion Forum about Traveling with Diabetes.

Hope this helps! (Comment this)

Written by: Bill and Steph Quick at 2006/02/25 - 11:23:43
16 - I have been on Symlin now for about 8 weeks and so far the results have been pretty good-my doctor is very pleased with the results. The only problem I have is that I have been steadily gaining weight, while even maintaining my Weight Watchers regime and exercising 6 days per week for over an hour. I am getting very frustrated with this gain of 8 lbs over the past 8 weeks. Has anyone else experienced this? Reading through all the blogs only indicates weight loss or even maintained weight..any thoughts would be helpful. (Comment this)

Written by: Jane C. at 2006/02/26 - 15:36:11
17 - I stumbled on this site by searching for some information on Symlin. It has been suggested by an Endocrinologist that I used to see. My question is that I am 47 and have many other issues besides the diabetes. Heart trouble, cholesterol, blood pressure, eye problems etc, my gene pool is really bad. Anyone out there have other issues besides a lousy A1c going on? I would love the weight loss aspect of the drug if that happens for me, but am concerned aout the lows etc. Any words of wisdom from those of you out there? (Comment this)

Written by: Sue Adams at 2006/02/26 - 22:58:16
18 -
Sue,

I have posted on this board since it started - we have never done a survey of who has the "worst" problems. There is a sort of "woe-is-me" tone in your writing, and we don't see much of that on this board.

Our oldest son died of cancer four years ago. If you have to have something wrong, diabetes is better ... you can live with diabetes ... trust me on that.

Symlin has only been on the market since June 2005. About 3/4 of the endos are prescribing it, while some are waiting for the 1 year mark to pass. If you have an endo encouraging you to try it, you really should consider it.

Symlin is not an easy drug to learn to use, but it seems to improve life for diabetics in several different ways. Symlin does not cause low bs. Insulin is the cause, and you have to learn how to dose - and correct - low bs, especially if you use fast insulin like Humalog.

On your next post, please let us know if you are Type 1 or 2 and how long you have been diabetic.

The Babe

FYI, I am age 64 and a T2 diabetic for 25 years. I have had double-bypass heart surgery. My tryglycerides are bad, and my HDL is terrible. I have had two toes amputated, bypass surgey in both legs, around 50 minor foot surgeries and I can only walk short distances. I use Cumadin to reduce the possibility of a stroke. I use Lasics to reduce swelling in my legs and I wear support hose for the same reason. I have high blood pressure that I am still working on to get it down where I want it. I use about 17 prescription meds, including Symlin for the last 8 months. I lost weight fast for 6 weeks then it flattened out - and went up a bit - for a net loss of 20 pounds (This is frustrating as I want to lose about 50 more and do not know "the answer" as yet). My A1c runs 5.8 to 6.2.

And I feel great almost all of the time!!!
 (Comment this)

Written by: BioBabe_ISV at 2006/02/27 - 02:32:40
19 - This may sound like a stupid question - can you use symlin without insulin? I am T2 for 10 years and have never had a low. My A1C is 7.7 (not the worst but definately not the best it could be). My endo mentioned trying symlin. I live alone and am terrified of having lows. (Comment this)

Written by: Nancy in Lake Mary at 2006/02/27 - 11:16:14
20 -
Nancy,

Symlin used alone does not cause low bs. Insulin causes low bs.

The typical T2 Symlin dose in diabetics is 20 U-100 units.

There are Symlin clinical trials "as we speak" being done to test weight loss in non-diabetics. They have gone as high as 60 units without one incidence of low blood sugar.

The Babe
 (Comment this)

Written by: BioBabe_ISV at 2006/02/27 - 14:57:02
21 -
Nancy,

Talk to your endo about Byetta also.

The Babe (Comment this)

Written by: BioBabe_ISV at 2006/02/27 - 16:58:28
22 - Hi Everyone,
I am a 44yr insulin dependent diabetic on a pump since 1996. I started on Symlin the early fall and have been doing great, have lost almost 30 lbs now and I love the decrease in appetite but just over 2 weeks ago, I started having terrible diarrhea, every day, sometimes all night with no changes in food or activity. I am also on Cymbalta for neuropathy but have been on that for several months now also. My doctor (endo) is unsure of why this is happening but thinks it may be the Symlin. He suggested that I cut out my evening dose of Symlin and cut my morning dose down by 5 units while he awaits labs results. Has anyone else been bothered by severe diarrhea while on Symlin? The nausea will go away after time but this is horrible, I'm afraid to go anywhere. Help! (Comment this)

Written by: Laura at 2006/02/27 - 18:08:58
23 - Hi Nancy,
Yes, definitly talk to your doctor, Symlin is for type 1 only, Byetta is the same type of drug for those not on insulin, my husband is a type 2 and on it and it works great, no lows for him and he was getting them on his pills! Good luck (Comment this)

Written by: Laura at 2006/02/27 - 18:11:36
24 - Jane,
I haven't gained weight, but I haven't lost any either. I lost 2 lbs the first week but I promptly gained it back. I have one question about your exercise, do you supplement with carbs to exercise?
The reason I ask is this, yesterday I ran 8 miles, burning about 1022 calories, but I had to intake around 650 calories to run those 8 miles, making the net calories burned 372. The point being, if you have to supplement your exercise with calories to avoid going low, you might not be burning more than you taking in on a daily basis. Also, a lot of times diabetics who are insulin dependent will often times have wild swings with exercise (very low lows and very high highs). That in and of itself is not conducive to weight loss and can cause you to gain or stay the same until you figure out a way to maintain stable blood glucose before, during, and after exercise.
These are just some of the things Ive worked on with my sports therapist/chiropractor. Amazing that some of the best help surrounding exercise and maintaining blood sugars came from someone who is NOT my endocrinologist! A lot of "normal" people will struggle with low blood sugars during intense exercise, so sports therapists are on familiar ground when they are discussing blood sugars. (Comment this)

Written by: Sarah at 2006/02/27 - 18:27:33
25 -
Hi Laura,

Ref: Nancy - some clarifications:

"... Symlin is for type 1 ..." Symlin is also used for certain stages (such as my late stage) of Type 2.

" ... Byetta ... is for those not on insulin ... Type 2 ..." Byetta is also sometimes used for earlier-stage Type 2s using insulin and pills -or- just insulin.

"...Byetta is the same type of drug..." Actually Symlin and Byetta are quite different in both their actions and their production. They just happen to be made by the same company (Amylin).

Sorry Laura, I'm not trying to be confrontational, but a lot of people read this blog.

The Babe

 (Comment this)

Written by: BioBabe_ISV at 2006/02/28 - 00:30:35
26 - Thank you Babe for straightening me out on a few issues but do you know of anyone who is bothered with diarrhea from the Symlin? I did not take my dose this evening as recommended by my doctor and I did not have diarrhea but the thought of losing out on such a great drug is not good either. My after meal blood sugar was in the 160 range, higher than I have been running with the Symlin so I am hoping and praying that it's not the Symlin causing my issues. I'm open to any advice and appreciate being corrected when I am wrong, don't want to lead anyone astray!
Laura (Comment this)

Written by: Laura at 2006/02/28 - 01:09:17
27 - i have been a diabetic for 27 yers and and Type I. I use an insulin pump, but the A1c's just dont seem to get in the range we want. Sorry if I came off as the "woe is me" type. Was just wondering how it would be for someone with other things besides the diabetes. :-) (Comment this)

Written by: Sue Adams at 2006/02/28 - 09:34:59
28 -
Laura,

I had what I called "loose stool" occasionally during the first four months. I am pretty sure it related to Symlin. The only other connection I could make was eating more fat than usual. It usually happened about an hour after eating. It has not occurred for several months.

I think there may be more info in some of the earlier versions of this blog. They are still available in a "read only" format.

The Babe
 (Comment this)

Written by: BioBabe_ISV at 2006/02/28 - 19:57:42
29 - Hi Sarah,

Thanks for the response. I do accomodate for any additional calories I eat for low blood sugar within my daily points for Weight Watchers. So that is why I am perplexed as to why with everything else constant, the only variable in my routine is Symlin use. Still very frustrating...

Thanks (Comment this)

Written by: Jane C. at 2006/03/01 - 21:32:12
30 - Babe: I am one of the few who may be flunking byetta. I go to the endo 3/6 and want to be informed if she brings up symlin again. I don't think with an A1C of 7.7 that I am in the late stage of T2. I am hoping that a change of meds will allow me to continue byetta as I had great results the first month of the four months I have been on it.

Thanks for the info. It always pays to be prepared. (Comment this)

Written by: Nancy in Lake Mary at 2006/03/02 - 10:32:37
31 -
Nancy,

I suggest one other bit of research prior to 3/6.

Call AMLN and talk to someone about your situation.

The Babe (Comment this)

Written by: BioBabe_ISV at 2006/03/02 - 14:07:32
32 -
Jane,

It sounds as if you may be adjusting your Symlin dose at each meal.

I have not heard of anyone doing that. I am under the impression that the Symlin dose is fixed while other things, such as fast insulin (Humalog), food etc. are considered variables. You may wish to call Amylin on this.

The Babe
 (Comment this)

Written by: BioBabe_ISV at 2006/03/02 - 14:16:37
33 - Hi Babe,

First of all, I am very honored to have been answered by our Symlin spokesperson/expert! Thanks for taking the time!

I actually have stabilized by Symlin dose at 10 units with each meal over the calorie/carb guidelines. What I meant by Symlin being the "variable" in my routine is that my food plan and exercise has been the same as before I went on Symlin, and so I thought it would help in dropping some weight in combination of the Weight Watchers plan and exercise I was already doing, but it seemed the opposite happened. After the first two weeks and two pound gain I thought that maybe I was not being diligent in keeping track of the calories(or points in Weight Watchers lingo)that I was eating, but the last four weeks I have been diligent about writing everything down. And still the weight is creeping up. When I get a chance I was thinking about calling Amylin to see if they have any info. But I thought my Symlin use would help with my weight loss efforts. I definately feel full faster, especially at the dinnertime dose, hence my frustration. But my numbers have been very good and my lows/high have not been extreme so that is something to be very happy about.
Thanks,
Jane (Comment this)

Written by: Jane C. at 2006/03/02 - 20:28:31
34 - Laura - I too have deleloped the diahrea after none for 3 months, it only happens in the morning and I believe it is due to a higher dose of Symlin in the evenings (stabilizing nighttime bs) and then a longer period of time before I take the lower morning dose. I can count on it to happen 1/2 hour after taking it and then I'm fine the rest of the day. I don't know if this helps but look at times and dosages for any patterns.

Jane - You might need to lower the points that you are using for W.W. My doctor had me write down everything I was eating and it turned out I was eating less than 1000 calories a day and gaining weight! He thought I was eating too much. We are working on raising my metabolism (that is harder). The Symlin just makes your stomach work more normally, your bolus and basal rates may need some adjusting. If you are still gaining weight, I would start by cutting back on the points a little and see if that slows or stops the gain. (Comment this)

Written by: Deb D. at 2006/03/02 - 22:36:17
35 -
Jane,

I am honored that your are honored! ... now let's get back to work :>)

Is there any chance that you recently went off a low carb diet? That caused me to gain some weight in about the way you described. I will be glad to explain if it applies to you.

If you are Type 2, the full dose of Symlin is 20 U-100 units per meal. You may want to discuss this with your doc.

TheBabe
 (Comment this)

Written by: BioBabe_ISV at 2006/03/03 - 00:15:07
36 - 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:
Many thanks, from Bill and Steph Quick

 

 (Comment this)

Written by: Steph & Bill Quick at 2006/03/04 - 12:01:40
37 - Hi all,

Well after being on the Symlin for 3 full months (since November) my endo and I have decided for me to go off of it. No matter how much we adjust my basal rates ( I wear an insulin pump) I'm still struggling with low blood sugars 30 minutes to 1 hour post meals and then rebounding to high blood sugars 2-3 hours later. The lows are severe lows as well: in the 30's and I haven't been feeling my lows which scares me. My MD said the reason I'm not feeling them is because symlin stops you from producing epinephrine and adrenaline; both of these hormones are what causes you to feel your low blood sugars-they cause the inrease in your heart rate, sweating, etc. Without those hormones being produced you won't feel your lows and your blood sugar won't come up as easily from a low. My endo said that while Symlin can not cause your blood sugar to go low, it can cause it to STAY low as you don't have the adrenaline and epinephrine kicking in. My MD thinks that what is happening with me is that I'm having these lows (and no matter how much we change my insulin and basals I still have them) and then I'm staying low during the duration of the Symlin action in my body. Once the Symlin wears off, my body then goes into "overdrive" and produces more epi and adrenaline to bring up my blood sugar resulting in the rebounding highs. It's a vicious cycle.

The other interesting thing is that the Symlin seemed to work really well the 1st 6 weeks and then the effect seemed to taper down. It doesn't seem to last in my system as long. My MD thinks it loses it's potency in your system the longer you're on it... My A1C prior to Symlin was 7.2 and on Wednesday it was 6.7. A drop, yes, but not significant enough to warrant the extreme lows I'm having. My MD and I are working hard on getting my A1C down so my husband and I can start trying to get pregnant and he feels these extreme fluctuations in my blood sugars are detrimental. I went off Symlin on Wednesday and my blood sugars have settled down. No more extreme lows. Running a little higher than I'd like but all my basals had been adjusted so much that my MD said it's to be expected. I'll fax numbers on Monday and adjust basals then. My MD also said that he's seen great success in his patients on Byetta but not on Symlin... Any thoughts??? Any other Type 1's experience the extreme fluctuations I did? Thanks all! (Comment this)

Written by: Megan at 2006/03/05 - 03:08:04
38 - Megan, I thought Byetta was only for T-2. I just finished my 7th week and am doing ok with Symlin but I'm still not on the full 10u due to nausea STILL. But I have noticed dropping low again after juice should have brought it up sufficiently. Your theory explains that. Good luck! (Comment this)

Written by: Becca at 2006/03/05 - 10:40:28
39 - Hi Megan,

I would like to comment on your concerns with Symlin. I have not posted on this blog before so please let me identify myself first. I have had type 1 diabetes for over 49 years and have been on an insulin pump for over 7 years. I have also been using Symlin for over 9 months, since May 2005.

You indicate that adjusting your basal rate does not eliminate hypos after Symlin. I hope you meant to say bolus rate. If you do not reduce your pre-meal bolus, you will definitely go low within 30 minutes of eating. Basal rates, at least for me, do not have to be reduced.

Symlin has a half-life of 48 minutes so in three hours it is finished and your blood sugar is increasing from your delayed meal. Therefore, your high BG is not necessarily a rebound from a low, although a rebound may play a roll if your BG was in the 30s as you indicate.

You may want to check again with your MD about hypo unawareness due to Symlin’s effect on epinephrine (adrenalin and epinephrine are the same thing.) Symlin inhibits glucagon production but does not interfere with epinephrine production. In any event, if blood sugar is low, Symlin no longer inhibits glucagon production nor does it any longer inhibit stomach emptying. With Symlin you should respond to a low BG just as without Symlin because both glucagon and epinephrine as well as stomach emptying will be intact.

As far as losing potency the longer you are on Symlin, the FDA says that the effects are sustained throughout three years of clinical trials.

I have had great success with Symlin. My post-meal BG is very close to my pre-meal BG. I do not lower my basal rate. I inject Symlin immediately before a meal and do a bolus, extended over 2 to 3 hours, for my carbs. Sometimes I bolus all of my insulin dose at once one hour after injecting Symlin, which works as well, and often times better, depending on the meal.

I would not want to see you give up Symlin if it could be a means of superior glucose control. I would talk with your doctor about reducing your mealtime bolus as much as necessary and using an extended delivery. It is better to reduce your bolus too much and then titrate up than to experience the lows. Reducing your basal rate will only add to an increasing high BG after a couple of hours.

JohnK (Comment this)

Written by: JohnK at 2006/03/06 - 00:06:05
40 - Hi John,

I have reduced my boluses as well-to the point of not taking boluses with meals (as you said you do) but taking them 1 hour post or square-waving it. I still struggle with the lows and rebound highs. I also tried changing my basals to lower 1 hour after meals and Symlin and then back up 2-3 hours later when the Symlin is out of my system and still have had the same problems. You said that I should respond to a low blood sugar the same way on Symlin as I do off but I guarantee that I do not. I have seen such an increase in the severity of my lows. I've been a Type 1 diabetic since I was 11 (I'm 25 now) and I've never had as bad of lows as I do when I'm on the Symlin. I once was 105, injected the Symlin, ate and within 30 minutes was in the 30's and almost needed Glucagon used on me. This happened multiple times despite adjusting boluses and basals. My main concern with Symlin is that it does not seem to work consistenly on me. I even tried eating the EXACT same meals 2 days in a row and not changing anything in my routine what so ever and I'd still go low one day, be fine the next and high another day after taking Symlin... I agree that reducing your basal rates will add to increasing high BG's once the Symlin wears off-my basal rates are actually higher 2-3 hours post meal to try and combat the Symlin wearing off. Thanks for reminding me to clarify that I have reduced my boluses-any more ideas on why I'm having such a difficult time with it???? (Comment this)

Written by: Megan at 2006/03/06 - 01:23:42
41 - Wow Megan - I always look for success stories with Symlin as I'm newly diagnosed and on Symlin. It sounds like its a real trial for you! I'm on Lantus as a basal, Humalog as bolus, and Symlin before each meal. My bolus rates are back to what they were pre Symlin, but I don't spike to 180-220 like I used to after meals. I definately feel my lows of 50 to 60, even 70. all the classic symptoms - shaking, sweating, etc. The only data I could offer is this - I'm really new to insulin - just 2 months. And symlin too...maybe there is a factor in using a hormone like insulin long term that effects uptake? and how symlin is used by the body? Just a stab in the dark here..

Joe Lansing
"quod me nutrit me destruit" (Comment this)

Written by: Joe at 2006/03/06 - 09:13:18
42 -
Joe,

If you have only been on insulin 2 months, did you discuss Byetta with your doc before going on Symlin?

Byetta is specifically directed at Type 2 people just coming off pills and going on insulin -or- just going on insulin.

Symlin is directed at Type 1 people who are basically making no natural insulin -or- late stage Type 2 people who are basically making no natural insulin.

I suggest you talk to Amylin in CA about this and then discuss with your doc.

Do not feel like I am "dissing" your doc. Both drugs are very new (less than a year) and we have seen more than one wrong diagnosis right here on this blog. The docs are learning this stuff right along with the rest of us.

The Babe

 (Comment this)

Written by: BioBabe_ISV at 2006/03/06 - 12:20:46
43 -
Joe,

Byetta is known as "lizard spit". It is the synthetic version of the saliva of the Gila Monster, which eats about 3-4 times a year and still maintains good blood sugar control.

Byetta was approved by FDA in 2005 and is also made by Amylin. It operates in a completely different mode than Symlin.

You can get more info at www.Byetta.com. There is also a Byetta blog on this website. There was a NY Times article last week that emphasized the weight loss side effect; however, Byetta is currently approved for diabetic use (glucose control) only ... of course most diabetics need to lose weight .........

The Babe


 (Comment this)

Written by: BioBabe_ISV at 2006/03/06 - 14:02:57
44 - Megan:

Having done pregnancy as a T1, I cannot see a good reason why you would want to be on Symlin while pregnant, considering a) not approved for use in pregnancy (yet) and b) you have to run a lot tighter control when pregnant and if you have hypo unawareness on Symlin now, will be worse when you're pregnant.

Babe:

I have seen your posts on Yahoo investor board and been very appreciative of the info. (I've been AMLN investor since 1998.)
Want to take issue with your echoing of the Symlin literature that "insulin causes lows and not the Symlin". After my first foray into using Symlin, I am dropping an average of 100 on my glucose post-prandial readings using 2.5U of *Symlin only*. If Symlin not causing the drop, what is since no other insulin on board? Additionally, there are plenty of T1's on the Yahoo Symlin user board injecting *only Symlin* at meals to cover post-prandial spikes, so I am not an isolated case. The workings of Symlin may vary dramatically for each person and I think new users need to very cautious and realize Symlin seems to affect glucose on its own for some T1 users. I have been T1 for 32 years and certainly not a novice to diabetes management and I almost passed out from some horrific lows. As a result I have stopped the use of Symlin for the moment (but plan to try again since I have spent $90 on the Symlin co-pay!)

Thanks for all the info, everyone, and please be careful out there!

~Lara
 (Comment this)

Written by: Lara at 2006/03/06 - 14:13:06
45 - Lara,

I agree that I should not be using Symlin in pregnancy since it's not approved & causes the hypo unawareness in me. My MD was hoping it would either be approved for use in pregnancy soon or that it would get my A1C down to a good range that would be better for me pre-pregnancy. It's interesting to see that you have had the same problem as me with the Symlin "causing" the lows... I have a friend on Symlin as well (also a type 1 diabetic on the pump) and she went off of it as well due to some scary lows. Very interesting stuff.. I've been off the Symlin for 5 days now. Blood sugars today were much better-

9am 156
30 grams carbs
2.0 units insulin

1030 129

1:30 pm 99
30 grams carbs
1.2 units insulin

I'm going to see how I do off it but am still curious as to why I had such a hard time using the Symlin. (Comment this)

Written by: Megan at 2006/03/06 - 17:46:32
46 - The instructions for storage of Symlin call for keeping it under refrigeration, but sometimes that is impossible. I have continued to use my Symlin (and my insulin) after keeping it at room temperature for six weeks or so. The only damage I have noted is that it seems somewhat weaker. Has anyone else had any experience with this flouting of the manufacter's advice, either with Symlin or with insulin? (Comment this)

Written by: Victor in Spuyten Duyvil at 2006/03/06 - 18:43:46
47 - The literature does say that when your ready to open a vial you can take it out of the refrigerator and keep it at room temperature. Since the average room temperature is 75 degrees, that would be ok. I never inject cold insulin or symlin as it burns and hurts like crazy. My insulin is in a pump which is right next to my body so therefore is a little warmer than room temperature (body temperature by the time it reaches the injection site). My symlin is carried in an insulated bag and NEVER left in the car. I've had no ill effects from either that I'm aware of. (Comment this)

Written by: Deb D. at 2006/03/06 - 20:23:03
48 -
Lara,

Ref: Your comment 'Want to take issue with your echoing of the Symlin literature that "insulin causes lows and not the Symlin".'

I hope you have taken this to your doc and to Amylin.

I can assure you that I would never knowingly post something on this blog that disagrees with the Symlin literature published by Amylin.

The Babe
 (Comment this)

Written by: BioBabe_ISV at 2006/03/06 - 22:36:30
49 - I am currently on Byetta, but will be changing to Symlin in about 5 - 7 days. I really am concerned. I started on Byetta in November, 2005. I have only lost 5 lbs, but it has really helped to keep my BG's down, and I have reduced my Novolog almost in half, and reduced my Lantus by 14 units.
Did I read somewhere Symlin will be offered in a pen?
Also, am I correct that one bottle of Symlin is 500 units and not 1000 units like most insulins?

I am concerned because I have a very low tolerance to medications. When I first began the Byetta, it affected me strangely the first 3 days, and then it was better. It was kinda like I was *high* the first day, was dizzy, not very nauseated, though. The second day got better, and the third day it was all right.

My endo said to take 5u, 10u, and 20u of the Symlin for breakfast, lunch, and supper to begin with and cut my insulin dose in half. I have more trouble in the mornings with my BG's. I understood the titration was different. I am sure he knows what he is doing. He is a new endo for me. I guess it may be because I was already taking the Byetta.
I am looking forward, in some ways, to taking the Symlin, in other ways, I am scared to death. I understand the Symlin will work better with T-2's who are on insulin. My insurance company would not pay for the Byetta at all because they said it was not for use with insulin. I have been paying for it, but since they will pay for the Symlin, I have to try it.

Sorry this has been so long. Thanks for listening.
I appreciate all I have learned from your experiences.
I do hope I will be able to tolerate the Symlin, that it will work as well or better than the Byetta on my BG's and that maybe, just maybe, I can lose more weight. I need to lose about 30 pounds. (Comment this)

Written by: Sandra at 2006/03/06 - 22:45:19
50 -
About SYMLIN (the technical name is pramlintide)

The natural hormone insulin was discovered in about 1920. It was brought to market within a year or two.

In 1986, the natural hormone amylin was discovered, and found to be made in the same beta cells of the pancreas as insulin. It has taken all this time to get Symlin (the synthetic form of amylin) through FDA procedures and to market. It was approved by FDA in spring of 2005. Part of the approval by FDA included a requirement to not publicly advertise Symlin for one full year.

Symlin/amylin is not insulin. Symlin/amylin works as a "team" with insulin. Diabetics have a shortage of insulin and a shortage of amylin.

Because amylin is a natural hormone that was discovered relatively recently, there is still a lot to learn about it. Symlin is approved by FDA and used primarily for blood sugar control, but has a strong weight loss "side effect". There are clinical trials (AC-137)in progress to determine if Symlin can be used for weight loss in non-diabetics. The "interim" results were good.

Symlin is currently injected; however, Amylin (the company) has plans to introduce Symlin in "pen" form.

There are additonal possibilities for using Symlin/amylin that have yet to be explored, including but not limited to Alzheimers, arthritis, and osteoporosis.

The Babe

 (Comment this)

Written by: BioBabe_ISV at 2006/03/06 - 23:36:43
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