Symlin 3: Oct/Nov2005
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Bill the diabetesdoc
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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)
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.
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(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)viv (Comment this)
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Sandy,
Symlin is not insulin and cannot cause low blood sugars. You problem is most likely in your insulin dosage.
The Babe (Comment this)
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
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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
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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)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)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)
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)
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
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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)
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.
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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
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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
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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)
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)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)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)
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
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Marla (Comment this)
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)
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)
JM (Comment this)
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)
EMAIL_IS_msmcclellan@yahoo.com (Comment this)
Courtney (Comment this)
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)
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)
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.
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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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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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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
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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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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
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