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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Saturday, March 01, 2008

Symlin So Far

It has been almost two weeks since I started experimenting with Symlin.

While it has been pretty scary adding another variable into the mix, the benefits I've experienced show that this tool has some real potential to help me.

To be honest, while I've been cautious with this new tool, I've also not done it justice in really trying to figure it out. I've not been logging my results, and have been just watching it "on the fly" after meals.

The caution comes from stories in the OC of post meal low blood sugars that were very hard to treat. Those stories scared me, particularly because I have a heck of a time with over treating lows in the first place. I am frightened half to death by the thought of eating TONS of stuff to (over)treat a low, and none of it digesting when I need it to!

I take my Symlin dose before I eat (20-30 minutes), and take the same amount of insulin but extend it over 90 minutes or so (thanks to some expert advice). My blood sugars after eating stay almost absolutely flat for about two hours, then gradually rise up, peaking at a not-always-reasonable number.

I need to play around more with that, but given some time and attention I'll get it figured out.

The way my blood sugar stays so flat after eating simply amazes me. I almost chuckle in amazement when I check my blood sugars for those couple of hours. Hypnotized by something that seems downright impossible based on my previous 27 years of living with diabetes.

I've experienced a fair amount of the nausea that can happen while re-introducing this hormone back into my system. It hasn't been horrible for me, but definitely there. With this it has been hard to know if the perceived appetite suppression is simply because I feel yucky, or if I am really feeling satisfied earlier.

The key to getting past this nausea will be to stick with it consistently. I am assuming that, like other medicinal side effects that it will go away (or get less severe) after some time. Is that true for this medicine?

I also talked previously about how I disliked the actual shot part of it. Silly, I know. But real for me (and that is what matters). I haven't done shots in over 10 years. I'm spoiled by pump therapy. So I adapted (like we do), but maybe not in the way you might think (getting used to shots again). I put some Symlin in an old pump and strapped it on!

There is a price to pay in dealing with another thing on an already crowded belt-line, and another infusion set (with tubing). But I need to make it easy for me to use, so I can stick with it. If I dread taking the shot I'll find excuses and justifications for not using this tool.

It's been a full week with the Symlin in a pump, and I think I like it. It's another option for me, and I like options. You have to remember, this is not my source of insulin, so I don't NEED to wear the pump 24/7. I take it off when I exercise, and I don't wear it when I sleep. Only when I want easy access to my Symlin. And I've always got my pen for when I don't want to wear the second pump.

There's also the supplies to be concerned about. If I stick with it I'll be using twice the cartridges and infusion sets. That may become an issue over time.

It's been good so far, but it's only been 6 or 7 days (on the pump). Time will tell what approach works best for me, and it may be a combination of a few different approaches. I also need to be more active in logging my information so I can tweak and adjust how I'm using this new tool and make the best of it.

To wrap things up I have a question for those using Symlin. What happens if I take my symlin dose and then my meal is significantly delayed?

20 Comments:

Anonymous Sara said...

Hi Scott!

So I had the 'flat for two hours and then unpredictable spike' too. Here is how I solved it - I don't know it might work for you. I took the Symlin before the meal as directed, but then I did not bolus AT ALL for the meal until an hour or an hour and a half later - for the carbs I had eaten earlier.

For example, lets say I was going to eat lunch at noon, I would Symlin at 11:45, eat a 50 carb lunch. Test my blood sugar at 1 or 1:30, and bolus based on 50 carbs and whatever number I was at.

It was the only way I could get rid of the unpredictable spikes. I mean, what is the point of Symlin if you just spike later, right?!

Hope this helps!

11:43 AM  
Blogger Cody Turner said...

Scott,
I am a type 2 on Symlin and yes with continued use the nausea will go away and/or get less severe. When I first started it mine was so severe that I had to pretreat it with phneragan before meals. Now I just get occasional stomach discomfort with it.

12:48 PM  
Blogger Scott said...

I hope you'll share your experiences ... good and bad ... in the TuDiabetes Group "Symlin Users Forum". I cannot impart any personal experience since I don't yet have any, but I think you certainly can!

3:14 PM  
Blogger Bernard said...

Wow Scott a second pump. That seems like a lot for something that you take about 3 times a day. But if it works, then it's probably worth it.

Have you looked at the SymlinPen? It's pretty portable. Like you, I've been getting used to injections again. The pen is a lot easier than having to carry a vial and syringe around.

And as Cody said, the nausea does pass. So stick with it.

3:47 PM  
Anonymous Jeff said...

Hi Scott.

Best of luck with the dual pumping scenario. The flat sugars after eating are very interesting, and I hope you're able to get a good handle on the belated rise that's still happening.

4:24 PM  
Blogger AmyT said...

Thanks for your report(s), Scott. I have been so reluctant to try Symlin because of an extremely sensitive stomach -- years of pain, in fact, that has FINALLY cleared up.

Anyway, I'm extremely curious to hear how Symlin impacts your BG control.

So thanks!

5:40 PM  
Blogger Anne said...

I had the delayed spike too and thought that maybe symlin would work better with Regular insulin as opposed to Humalog but never tried it.

The scariest experience I had w/symlin was that I got so nauseated that I threw up my breakfast and had 70g's carb's worth of insulin in me and no food. I was so nauseated and had a hard time eating and what I did manage to choke down wasn't getting digested. It was the first time in 19 years of diabetes that I had to go to the ER. Hmph! So I would advise not taking it if you ever feel unwell beforehand. (In my case, I woke up feeling a little gross from high BG's overnight and the symlin just put me over the edge, I think.)

For me, in the end, the risk of not being able to come out of a low wasn't worth it. I still re-consider going back to it from time to time, because it wasn't all bad. And I know some people really like it.

I also had some low-grade nausea and also questioned whether that's why I wasn't hungry. I ended up reducing the dose (after getting used to it) to something like 3 U--can't remember how many ug that is.

The 2-pump thing is a good idea. Symlin hurts more going in than insulin, I swear. I never got to try the pen though. I imagine that's better.

I don't know what would happen if you took symlin and then didn't eat right away. If you don't take insulin, I don't think it should lower your BG but I'm not sure about that.

Good luck with it.

6:31 PM  
Blogger Jenny said...

Scott,

As I understand it, the reason your blood sugars are rising after a delay is because Symlin is keeping your lower stomach valve closed, preventing digestion and as the carbs aren't digested they aren't reaching your bloodstream.

That is also why it may difficult to treat hypos with anything but pure glucose that doesn't require digestion.

If the symlin is just postponing the spike and making it tough to meet it with insulin, I'm not sure why you'd want to use it. My understanding was that its greatest benefit would be in cutting down how much you eat (as is the case with Byetta) if weight was increasing your insulin resistance.

FWIW, Precose will do the same thing for me, since it dramatically slows the digestion of complex carbs. However, they will eventually show up in the blood stream a few hours later.

8:31 AM  
Blogger Carey said...

Sounds encouraging, Scott. Good luck with it.

7:12 AM  
Blogger Minnesota Nice said...

What an exciting new tool for you Scott.
Last I saw on his webpage Gary Scheiner was also wearing a second pump for the Symlin. Looks like great minds think alike.

7:49 PM  
Anonymous JB said...

Hey, Scott. If you take Symlin and your meal is substantially delayed you could feel lowish for a bit.

Also, you may notice that you have missed the window during which Symlin does it's thing, and you get that post-meal spike you were trying to avoid.

I have been using Symlin again for a few weeks now and am really doing quite well. And I was one of those who had scary, difficult to treat lows with it on MDI. For me, pumping has made all the difference.

Best of luck!

3:25 PM  
Blogger Larry said...

Scott

I've been on Symlin for about a week now and I think that its going to take some time to master. I wear a minimed paradigm pump and continous blood glucose monitor. What I've done to help with the spikes is I give myself my Symlin 5-10 minutes before I eat then about half an hour to an hour after I will set up my pump for a square wave bolus for the carbs I ate. Seems to work so far. I have to say that the CBG monitor is a great tool. It warns me when my blood sugars start to drop or get to high. Right now 15mcg's of Symlin works best for me. I tried 30mcg's but I kept getting low blood readings. I also have a second pump but have not yet thought about using it for Symlin. I find the pens easy enough. It's great to have a support group where people can discuss what has worked for them. Hope this is helpful

4:07 PM  
Anonymous Anonymous said...

Hi !
I am a 28 year old type 1 diabetic for 7 years now. I have been using the minimed pump and continuous glucose monitor for 3 months. My HbA1c before the pump was 10 and now its down to 8. I also and started symlin 3 days ago. The first night i tried it using the 15 micrograms ( 2.5 on syringe). I took it before dinner and boluses 50 % of what i was going to eat because with symlin you only need half the amount of insulin . For example if your carb ratio is 1 to 20 with insulin then you would be 1:10 with symlin. For example bread+cheese+jam+cofee should have been 50 carbs for me as my ratio is 1:10 on humalog. So thats what i did . I took my dose of symlin and then immediatly bolused. WITHIN 20 minutes, I THOUGHT I WAS DYING . MY BG WENT DOWN and i had to treat with almost 70g of carbs . It was VERY VERY hard to treat and on top of that, i was extremely NAUXIOUS . ALTHOUGH i had this bad experience the first night, i refuse to give up and tried again the next nigh ( I didn't even try for breakfast or lunch cause too scared of the low). This time i decided to use only 1.5 units of symlin on the syringe . I put in the symlin then decided that this time i would do a dual wave bolus on my pump.I ate 50 g of carbs and so again i needed to bolus 50 % so only plugged in for 25 carbs but half of that amount rigth away and the other half in 2 hours. This time less nauxious and sugars where not too bad but nothing great. This morning was the third day and i decided to try again but this time for breakfasr. I put in 2 units of symlin in syringe , bolused for 25 carbs again but this time i tried a square wave bolus wich would give me the 2.5 units of insulin i would require in a spread over 3 hours. RESULTS: I WAS unfortunatly still nauxious BUT i had no low bg's and sugar stayed stable for 3 hours after breakfast .UNFORTUNATLY for me, they started to spike after 3 hours. So tonight i will try again but this time i will do a square wave bolus but over a period of 2 hours instead of three.
I can't wait to "break the code". I also just got the symlin PEN but i won't be able to use it yet as the samllest dose is 2.5 and i am using 2 at the moment. Also keep in mind that i am presently on my period and as a woman, my hormones are already all over the place.
Wish me luck!

3:12 PM  
Blogger Scott K. Johnson said...

Good for you for keeping on with it.

I have found that I need the same amount of insulin, but just spread out over about 90 minutes.

Keep us posted, and thanks for sharing!

7:25 PM  
Blogger Lorien said...

I was recently told that i might be interested in Symlin, but after ready all the nausea stories, I don't think I'm that interested. I would take it to lose weight, so I'm looking into it as a temp fix. However, would I have to use it forever? Would I get used to it and then when I stopped using it would I have withdrawals? Would I gain weight back? I guess these are Dr. questions, but they don't always know things...I would also be nervous about not being able to treat low BG quick enough.

5:07 PM  
Anonymous Aurix said...

Thanks for the good readings.

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