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Avatar universal

Symlin pros and cons

I have been advised to give Symlin a try in an effort to smooth out my 2 hour post prandials.

My last glyco was 6.4.

I am prone to profound hypoglycemia reactions, and also have hypoglycemia unawareness.  I am a wondering what the experience with this drug has been?

My RX plan does not cover it, and I am told it runs in excess of $97/bottle!

My other issue is that it may involve shots 2-3 times a day, when I already do the pump routine for every meal.

The doctor says the elevation post meal is due to glucagon.  It seems to straighten out by my next meal, and I am wondering if this med is really needed.  I have a coupon to get a free bottle, and then I need to order more syringes, and it seems like the road I just left to go on the pump.

I'd like to make my diabetes less of a focus, and I am concerned this additional step or steps will make meals and eating out more of a hassle than it already is.
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Avatar universal
I have been on Symlin going on 2 months now.  I have lost 10 lbs and my blood sugar levels have been doing much better.  After an incident I had recently due to a severe low blood sugar, I am rethinking about Symlin.  I didn't wake up this past Thursday morning.  My wife and son were able to sit me up and managed to get some frosting and apple juice in me but it did not help.  I also became very combative.  I kept going in and out of consciousness so they had to call 911.  When they first tested my blood sugar it was 49 so no telling what it originally was.  The paramedics were able to get my blood sugar back up to 207 but I was not coming out of it.  They rushed me to the hospital where they ran all kinds of test.  I didn't know my name or where I was for 5 hours.  Finally I started coming out of it around noon so they released me.  My balance has been off, as well as my appetite.  My blood sugars increased but that was due to the ER disconnecting my insulin pump because nobody knew how to put it in SUSPEND mode (but that is another story).

After my mother and stepfather (who is a doctor) did some research on Symlin, they became very concerned. We have read that there have been some deaths associated with Symlin...this is what really stands out to me, especially when the deaths happend to some in their mid 30s (I am 36 years old).  I now have an appointment with a specialist doctor at Vanderbilt in December.  In the meantime, the specialist wants me to take a break from Symlin which I have already started...just in time for Thanksgiving.  Now I feel like I can have part of my life back by not taking Symlin injections 30 - 60 minutes before I eat, or at least having to remember taking the injections.  I won't have to worry about severe low hypoglycemic episodes or potential car accidents.  Please, everyone who is on Symlin, read as much as you can on Symlin and listen to what I have said.  Sure, Symlin seems promising, but a higher risk of death is not worth it to me.  After meeting with the specialist, I will do whatever he thinks I should.  I just think a second opinion is much needed.
Helpful - 0
Avatar universal
I am a 28 year old female diabetic who was diagnosed when I was 9.  I used to be on a regimen where I used both Regular, NPH, and Humalog to balance my blood sugars but it required a lot of effort and a lot of test strips which are so expensive, even with insurance!  In January 2005, my endocrinologist started me on Lantus to try to find some balance with my sugars.  My a1c readings have been under 6.2 for several years but I found that it was exhausting riding the highs and lows and rotating between sugar and insulin to try to "fix" my levels.  I found that I would become high after dinner so I would take more Humalog, however, this would make me crave sugar and sweets, it would drop my blood sugar levels, and it seemed like I was eating more just to make sure that I was safe...then I would spike from the sugar and have to start all over again with more insulin.  I found that it made it very difficult to maintain my weight despite exercising regularly which was a huge source of frustration for me.

My doctor started me on Symlin 3 months ago to try to help treat my post-prandial highs and I have really liked the results.  

However, there are some very important things to know with the medication.  For starters, it does make you feel somewhat nauseous at times and causes you to eat much less.  I've lost 9 pounds in 3 months, but I was happy with the weight loss so it wasn't a big deal for me.  The weight loss has seemed to level off over the last few weeks.  Also, I found that initially the nausea was far worse and it has tapered off...I don't even notice any nausea anymore and it has NEVER made me throw up.

The great thing about the medication is that it stops me from craving sugar/desserts/sweets after I eat meals and it prevents any significant raising of my blood sugar after I eat.  If anything, I've found that I've been forced to eat MORE sugar after meals to prevent bad lows.

It's very important when I take the Symlin to have sugar available because within 15 minutes of taking the medication, I notice a HUGE drop in my sugar levels.  Lately, I've been waiting until a few minutes AFTER I finish eating before I take the Symlin and this seems to help.  It's also very important to only take the Symlin for meals when I'm eating a large enough meal...I think they say at least 2 carbohydrate exchanges or the equivalent of 250 calories.

It's also important to test my blood before I take the Symlin because of its tendency to cause a significant drop in sugar levels.

I used to take 26 units of Lantus in the morning along with several units of Humalog before breakfast, lunch, and dinner.  Now I've cut back the amount of Lantus to 22 units in the morning and I take 1-2 units of Humalog before breakfast and then occasionally at times during the day if I find that I'm eating more than usual or if I eat something very sweet that may spike my blood sugar level.  I take the Symlin before lunch and before dinner.  And if I'm not going to be eating a big meal, I have the ability to decide whether or not to take the Symlin.

Symlin is not for everyone.  There are days when I'm taking over 6 shots a day between the various types of insulin and the Symlin.  You can't mix it with insulin and actually they tell you not to inject it near where you inject insulin because they can't be mixed.  If you're trying to cut down the amount of injections, then this isn't the right med for you.  But if you want to find some relief from after-meal blood sugar spikes and don't mind the inconvenience of more injections, then this is something to consider.  

I hope this helps...sorry it is so longwinded!
Helpful - 0
Avatar universal
I am a 28 year old female diabetic who was diagnosed when I was 9.  I used to be on a regimen where I used both Regular, NPH, and Humalog to balance my blood sugars but it required a lot of effort and a lot of test strips which are so expensive, even with insurance!  In January 2005, my endocrinologist started me on Lantus to try to find some balance with my sugars.  My a1c readings have been under 6.2 for several years but I found that it was exhausting riding the highs and lows and rotating between sugar and insulin to try to "fix" my levels.  I found that I would become high after dinner so I would take more Humalog, however, this would make me crave sugar and sweets, it would drop my blood sugar levels, and it seemed like I was eating more just to make sure that I was safe...then I would spike from the sugar and have to start all over again with more insulin.  I found that it made it very difficult to maintain my weight despite exercising regularly which was a huge source of frustration for me.

My doctor started me on Symlin 3 months ago to try to help treat my post-prandial highs and I have really liked the results.  

However, there are some very important things to know with the medication.  For starters, it does make you feel somewhat nauseous at times and causes you to eat much less.  I've lost 9 pounds in 3 months, but I was happy with the weight loss so it wasn't a big deal for me.  The weight loss has seemed to level off over the last few weeks.  Also, I found that initially the nausea was far worse and it has tapered off...I don't even notice any nausea anymore and it has NEVER made me throw up.

The great thing about the medication is that it stops me from craving sugar/desserts/sweets after I eat meals and it prevents any significant raising of my blood sugar after I eat.  If anything, I've found that I've been forced to eat MORE sugar after meals to prevent bad lows.

It's very important when I take the Symlin to have sugar available because within 15 minutes of taking the medication, I notice a HUGE drop in my sugar levels.  Lately, I've been waiting until a few minutes AFTER I finish eating before I take the Symlin and this seems to help.  It's also very important to only take the Symlin for meals when I'm eating a large enough meal...I think they say at least 2 carbohydrate exchanges or the equivalent of 250 calories.

It's also important to test my blood before I take the Symlin because of its tendency to cause a significant drop in sugar levels.

I used to take 26 units of Lantus in the morning along with several units of Humalog before breakfast, lunch, and dinner.  Now I've cut back the amount of Lantus to 22 units in the morning and I take 1-2 units of Humalog before breakfast and then occasionally at times during the day if I find that I'm eating more than usual or if I eat something very sweet that may spike my blood sugar level.  I take the Symlin before lunch and before dinner.  And if I'm not going to be eating a big meal, I have the ability to decide whether or not to take the Symlin.

Symlin is not for everyone.  There are days when I'm taking over 6 shots a day between the various types of insulin and the Symlin.  You can't mix it with insulin and actually they tell you not to inject it near where you inject insulin because they can't be mixed.  If you're trying to cut down the amount of injections, then this isn't the right med for you.  But if you want to find some relief from after-meal blood sugar spikes and don't mind the inconvenience of more injections, then this is something to consider.  

I hope this helps...sorry it is so longwinded!
Helpful - 0
Avatar universal
I'm currently taking Symlin.  Has lots of pros and cons...first, I've lost about 15 pounds and have gone from 110 units of insulin (using a pump) daily to about 70 or 75.  

Makes you so unbelievably nauseaus you can't eat, so losing weight isn't really a problem.  Certain foods still make you so sick you pray for death even after you've adjusted to the medicine.

If you don't take it when you eat a meal...for me, it's an immediate BS of 400, no matter what I eat...

Often, when you take it with a meal, in the middle of the meal, my pump is off and I'm nursing a BS of 50 or so...it works and it works well, but you have to work CONSTANTLY on it.  

I have a 40 per hour week job and find that if I want to get paid, I don't really have time to be a diabetic!  Too bad I didnt get a choice!

It truly is a miraculous drug in that BS's were phenonmenal as long and I didn't skip a dose...1/2 your insulin dose at meals and you should be fine!

Kel
Helpful - 0
Avatar universal
4youreyesonly,

I haven't used Symlin only because it not available in this part of the world yet (New Zealand). But I will be at the front of the queue when Symlin is released here. I have major problems with high blood sugars after meals. Or "post prandial glycemic excursions", as the experts so quaintly put it.

I also have problems with hypos, but they are normally the result of trying to chase high blood sugars down with large amounts of insulin. Hypoglycemic unawareness is a problem. And my endo tells me that I have too many lows. But if I could just stop the highs, the lows would stop happening!

Going on a low-carb diet has been only partially successful. And I am the most sensitive to carbs in the morning, probably because of the combined effect of glycogen being released into the bloodstream and the Dawn Phenomenon. Before breakfast, I inject 8 units of Novorapid to take care of only 15 grams of carbs. Sometimes it is too little, and sometimes it is too much. My morning blood sugars are extremely volatile and inconsistent.

It is not surprising that, in the clinical trials, Symlin appeared to cause "severe" hypoglycemia. It was administered in a double-blind study. Which means that participants didn't know if they were injecting Symlin or a placebo. Because the pre-meal insulin dose wasn't reduced, participants who injected Symlin, which inhibits the release of glycogen into the bloodstream, became "severely" hypo.

This only proves that the stuff really works! So I wouldn't be concerned about using it. Just be sure to reduce your pre-meal insulin boluses accordinly.

Having to inject Symlin is a bind. And when I start taking it, I will probably only inject it before breakfast. I will rely on insulin to contain blood sugar levels after the other meals.

Cheers,

Mark
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Avatar universal
Hi 4youreyesonly!  Congratulations on a great Ha1c!  This # proves that you are doing something right already!  

I am not a medical professional, just a mom with a 17 year old who was diagnosed at the age of 21 months, so any information passed along here should be verified with your healthcare team.

I just went to the Symlin website, www.symlin.com, and read up on this medication.  There is a warning that you should check out prior to beginning this new medication.  Perhaps you already have, and that's why you're questioning it.  To be perfectly honest with you, I would be concerned after reading their disclaimer, especially knowing that you are prone to hypoglycemia anyway.  The warning stated that severe hypoglycemia can occur and most times does within 3 hours following injection.  I'm thinking that they didn't have to use the word "severe" and that concerns me.

I hear you loud and clear about going back to injecting prior to meals and can see how you would hesitate to go back to that restrictive routine.  But there are many out there who this works for, so it a personal choice.  Here's something to think over;  would you try this medication if it were in a pill form, even with the warnings?  The answer to this may help you make your decision.

Please speak with your endocrinologist again with your concerns after reading what Symlin has posted on their website.  Maybe by voicing your concerns, the two of you will come up with an alternative approach to bringing down your post meal bg's.

I'm hoping that others out there will share any experiences they may have had with Symlin.

Good luck & let us know how you make out.
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