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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.

Monday, March 10, 2008

It feels like THE MISSING LINK

Symlin.

I can't express how beneficial this medication has been for me so far.

Where has it been all these years? How have I made it so far without it?

It's been somewhere around three weeks so far, maybe a little more, that I've been using it.

Week one was on the pen, and it sucked. The nausea, the shot thing again, the new and unknown timing of digestion and how to match the insulin to it.

It's all relative, and I'm sure the pen is a great improvement over the vial & syringe.

Week two and three I used a second pump with Symlin in it. Yes Kathy, Gary Scheiner (rock on G-Man!!) was a big influence on my decision to try pumping Symlin. I worked with him for some pointers on it and to clarify some of the questions I had. I also got past the nausea (mostly) during this time.

After two weeks (or so), I can say that so far I love this approach. That the convenience of having my Symlin in a pump so outweighs the drawbacks of a second "set" of pump stuff. I'll talk more about why in a different post soon.

Making it convenient for me to use plays a HUGE part of using it consistently. Using it consistently plays a HUGE part of reaping the benefits I've noticed.

Those benefits include a significant decrease in appetite, as well as very "gentle" BG curves. It's amazing really. I'm almost hypnotized by watching my post meal blood sugars. I've never seen anything like it. Steady, steady, steady, then a slow and gentle rise, but not too high, then back to target. All slow and gentle curves.

It's like I've tamed the roller coaster.

The appetite connection is huge too, and that alone would be worth it for me. For the first time in as long as I can remember, I feel satisfied after eating less.

Satisfied and less are two very important words to me right there.

I'm in love with my Symlin, and can totally feel that my body has missed this important hormone for a long time. It seems to be, so far, a very useful tool in my diabetes management toolbox.

Time will tell if my struggling A1C's and weight will show any positive progress. I'm pretty sure they both will...

37 Comments:

Blogger Zazzy said...

I'm so glad it's working out for you and you are past the nausea! My endo brought up Symlin last visit but I think there is more room for other things, first.

For some reason, your double pumps brought up a question with me, I hope you don't mind. Insulin has to be refrigerated, yet pumpers wear the insulin at body temperature for several days at a time. There's not a tiny cooling unit, is there? How does that work? Inquiring minds...

9:09 PM  
Blogger Kendra said...

I'm very happy for you, Scott! :) I hope to add amylin to my regimen sometime in the next 10 years or so also :P (Maybe when I have a spare pump hanging around...or maybe when they figure out how to make it easy to combine with insulin?)

5:58 AM  
Blogger kath said...

Congratulations.

I agree -- the turning off the hunger thing is worth it!

7:29 AM  
Blogger Scott K. Johnson said...

Hi Zaz!

It is my understanding that insulin is good for about 30 days after it's been opened, even if not refrigerated.

A vial of insulin lasts me anywhere from 12-15 days on average, and it can be important to not have it cool when filling the insulin cartridge/reservoir (to help minimize bubbles).

As far as the insulin in the pump, there is no cooling unit. You typically fill the cartridge/reservoir with the amount of insulin that will last you for about three days (which is when you should change your infusion set, tubing and cartridge). It is fine at those temps for that period of time, though some people notice it starts to be less effective near the end of that time frame (which could be from a few different things). Does that help explain it?

Kendra & Kath: thanks!

9:19 AM  
Blogger Kevin said...

You're giving me some inspiration to make the leap (maybe). I'm Very happy to hear that you've been working with Gary and enjoying it.

A tame, dull, boring roller-coaster... ahhhh what all diabetic's dream come true.

I'm curious, though: is there any interaction with your basketball days?

9:31 AM  
Blogger Scott K. Johnson said...

Hi Kevin!

I disconnect the Symlin pump during basketball (and at night too for that matter), so I've got just the extra infusion site, not the tubing and pump too.

I haven't noticed any interaction from the medication itself on my basketball days.

10:03 AM  
Blogger Araby62 said...

Way cool. Keep up the great work & keep us posted!

6:52 PM  
Blogger Molly said...

Scott-
I'm so happy that Symlin has been so helpful for your management. I think that you're a superstar for trying it, and finding a way to make it fit into your life.
I can't wait to see your logs!
Sweet.

Molly and Dixie

7:13 PM  
Blogger Scott K. Johnson said...

Logs?! Oh crap...

:-)

8:01 PM  
Anonymous Laura G. said...

Yay! I'm so glad you went for it! "The missing link"...exactly. Symlin does the job that insulin can't do immediately after meals. Also I learned a lot about my lack of satiety after eating once Symlin restored that subtle but clear sensation...pretty interesting.

A question about your Symlin pump--do you use some basal Symlin as well as boluses at meals, or is that pump's basal rate set to zero?

Congratulations, and good luck wearing two pumps...whew!

8:29 AM  
Blogger Scott K. Johnson said...

Thanks Laura G.

I too am amazed at that feeling of satisfaction, and you said it very well - "subtle but clear sensation".

Based on advice from Gary S., I run a basal rate of 0.1/hour. Apparently Symlin is a little more prone to blockages, and running a small basal rate helps in that regard.

9:20 AM  
Anonymous JB said...

Scott, am I reading correctly that pumping Symlin means one constant rate of 0.1u with no boluses for meals?

This is fascinating. Do you run out of sets? How do you deal with insurance?

Thanks for clarifying.

1:22 PM  
Blogger Scott K. Johnson said...

Hey JB,

I run a constant Symlin basal of 0.1u/hour (to help minimize blockages), and then do a Symlin bolus of 10u pre meal (that equals the 60 dose in the new pens) through the pump.

I also then start an extended meal bolus of insulin for 90 minutes. I found that I don't need less insulin, just need it timed a bit different.

It's certainly not an exact science for me yet (maybe it never will be?), and there is plenty of room for improvement. But I'm close to a good formula for me now...

1:30 PM  
Blogger Scott K. Johnson said...

Oh yeah, for the supplies.

I've managed to secure enough supplies through non-conventional means to hold me over for a while. But you are correct in that this could become an issue for me at some time. I'm not sure insurance would cover twice the normal order of pump supplies.

1:32 PM  
Blogger AmyT said...

Wow, Scott, that's so awesome that it's working so well for you.

Can you fill us in on the 2nd pump thing? Which model? Where do you put the 2 infusion sites? When do you "bolus" your Symlin? Or do you have it set as a very minimal basal? Details, pleeeeaaaase!

Best,
AT

2:00 PM  
Blogger Windy said...

OK Scott! This is seriously fascinating, BUT I vote you write a new blog with all these Q and A's please!!! hee hee You have me salivating now to try Symlin at my next endo appt.!!!!

3:33 PM  
Blogger k2 said...

Scott -

I'm so glad to hear that Symlin is working for u.
I'm on the fence about trying it, but comments like yours make me really consider!

YOU ROCK
K2

4:31 PM  
Blogger Holly said...

I have 5 more unopened bottles of symlin in the fridge...they have your name on them! :) I hated it and gave up after 3/4 bottle. My BS went to 350s for HOURS day after day and couldn't get it down...

9:28 PM  
Blogger Scott K. Johnson said...

Holly - that sounds great! Thank you! Send me an e-mail and we'll work out the details. My e-mail addy is in my profile...

And yes, I will do another post with more details on the pump stuff.

5:51 PM  
Blogger Drea said...

I am so happy to read about your positive Symlin experiences! It is not available in Canada at this time....but I am awaiting its arrival.

I fear hypo's tho.....and not being able to treat quickly enough....or having unplanned activity soon after eating when the Symlin is still active...

Either way, that "full" feeling after eating only a little bit would be nice.....

8:05 AM  
Blogger Zazzy said...

Thank you, Scott! I really appreciate you taking the time to answer.

I hope the smylin continues to work well for you. I'll be curious whether the appetite decrease continues. It disappeared after a couple months on Byetta.

10:06 PM  
Blogger Val said...

Scott -

This sounds very interesting. I tried Symlin twice (several months each time, not just 2 shots), both times had no issue with nausea but my BG would spike into the 400s 4 hours after every meal. Maybe a background "basal" of Symlin would help.

Assuming my thyroid mess ever stabilizes, maybe I will give this a try when I can do a new pump this fall.

Good luck with the multi-pumps!

8:17 PM  
Blogger Bob said...

This comment has been removed by a blog administrator.

3:26 PM  
Anonymous Gregory Cappello said...

This comment has been removed by a blog administrator.

5:17 PM  
Anonymous doug said...

This comment has been removed by a blog administrator.

9:41 AM  
Blogger Benny said...

Hi, Im glad to see that you something that works for you. I would like to look into symlin (if I spelled it right). I would love to have less cravings about now because this new way of eating can really get to me. I just started blogging about my diabetic experience since I have just recently been diagnosed as type 1 but I have been a type 2 for about 5 or 6 years. Come on by my blog and get to know me, I wouldnt mind networking with more people that are diabetic.

5:27 PM  
Blogger Chrish Tiyan said...

This comment has been removed by a blog administrator.

6:59 AM  
Anonymous Medical Call Center said...

Good to know of your benefit from the pump...yes there are many who are highly benefitted for the same.

3:53 AM  
Blogger Chrish Tiyan said...

This comment has been removed by a blog administrator.

8:40 PM  
Anonymous Mobile Diabetes Management said...

I think Symlin is not available here in Canada..

11:06 AM  
Blogger Karen Kawas said...

ha! thanks for the welcoming! XD

7:00 PM  
Blogger CANICA said...

Nice article, I write as much as I can of diabets in My blog, and I follow your blog too, my father has diabetes, and I started to take care of my health a year ago, I discovered many things and I put all in my blog http://information-about-diabetes.blogspot.com/ ,

Greetings from Peru

2:30 PM  
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Linda Garland
Manager

2:19 PM  
Blogger Blog said...

This comment has been removed by a blog administrator.

1:42 PM  
Anonymous diabetic neuropathy said...

I've stopped symlin during the first week because of the nausea and asked my endo for another med. I'm happy it worked for you though

1:38 PM  
Anonymous tiffany and co said...

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1:17 AM  
Anonymous tiffany and co said...

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1:08 AM  

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