[PepsiLvr]

For those who are taking Symlin, did your doc give you the power to change your dose on your own when starting out (from 15 to 30 to 45 etc) or give you instructions on how and when to do so?

I stared on Symlin about a week ago. First, it was like pulling teeth to get my doctor to agree to it. I don't know why because my chief complaint is always that I am always hungry. Even after a large meal. I'm not really overweight but am close to it. I wanted something to control my BG levels after meals and to be able to feel full when eating.

Long story short, he calls in the script for 15mcg 3x daily (it's the pen) with meals and never said another thing to me except to decrease my insulin by 25%.

My solution... follow the website and increased the dose myself. I started at 15mcg for 3 days (no nausea) then went to 30mcg for 3 days (no nausea) and am now at 45mcg. (no nausea).

I know a lot of you are probably going to yell at me for changing the dose myself but my doc doesn't ever get back to me and he isn't too well educated on new medications. (a losing battle) p.s. I'm looking for a new doctor.

So..... just curious how common it is for people to be able to change their own dosages and what other doctors have done in a situation where you are supposed to increase the dose until you get to the maintenance dose of 60 or 120mcg. Had I not read the website and educated myself (as I do with all medications I take) I would never have known that the dose is supposed to be increased.

[camjen1]

I changed the dose myself because he would have to see me in the office for him to change. More money!

When I wasn't seeing results with the minimum dose I kept adjusting until I finally started to see something happening.

[PepsiLvr]

Originally Posted by camjen1

I changed the dose myself because he would have to see me in the office for him to change. More money!

When I wasn't seeing results with the minimum dose I kept adjusting until I finally started to see something happening.

What dose did you start to see something happening at? I am at 45mcg and I do "kind of" feel fuller when I eat and my bolus at meals has gone down by ~ 20 - 25%. All this happened around 30mcg. I really don't see any benefits to the 45mcg yet, although I just increased to 45 today. I did read that it may take a couple days to get the full effect.

[It Ain't Over]

My endo started me on Symlin when it first came out. At that time Symlin was stating to use no more than 10 units, and to start lower.
Later he said they had found higher doses worked better, and told me to use up to 30 units if I could tolerate. Since I get some nausea with more than 20, and about 15 works very nicely I have stayed at the lower range. Maybe i should go with more, but it does make control a little brittle.
I asked him recently and he said now they are encouraging even higher doses to control appetite and BG's.
How are the post prandials BG's doing? That seems to be where the benefits are, along with the weight loss. I lost 25 lbs right off, have leveled out since then. My A1c's went down about a percentage point too. Not bad.

[Alice]

I never started the "kit" given to me last year...took it back.

But, my endo (who gave me very little info...and then left the country on vacation) said to reduce my insulin by 50%...I take that as meal time.

Problem with me is that I frequently eat 30 grams or less at a meal anyway...which she didn't discuss with me. Turns out Symlin is recommended only when eating more carbs at a meal.

I think it's great for Type 2's not on insulin...but it didn't fit much of my "criteria" as a Type 1 already doing well on insulin. The improvement would have been marginal.

[It Ain't Over]

Originally Posted by Alice

I
Problem with me is that I frequently eat 30 grams or less at a meal anyway...which she didn't discuss with me. Turns out Symlin is recommended only when eating more carbs at a meal.

I seldom eat more than 25 carbs per meal anymore. The Symlin makes it too easy to stop eating. Still use it.

[RobiJo]

I started on 5u, then 7.5, then 10. when I take it now I take 10. I still go low a lot when I take it (usually only for extra large/high carb meals). I don't eat like that often enough to figure out a better ratio to cut insulin back.

It comes in a pen now? I'd probably use it more often if I had the pen. Hmm. I have like 6 vials sitting in the fridge.

[solox316]

Originally Posted by RobiJo

It comes in a pen now? I'd probably use it more often if I had the pen. Hmm. I have like 6 vials sitting in the fridge.

When you go to GDI in a few weeks, ask for a pen, they will give you one if they have them... I use it tons more now that it is in a pen.

To the thread question... It was fine (IMO) to up your own dose, it is supposed to go scaled up, as listed on their website. I haven't gone higher than 45mcg (7.5 units), coz of the nausea, but it still seems to do its job.

It is designed to work with insulin, so it wouldn't work well with T2s, unless it was with insulin...

[RobiJo]

Originally Posted by solox316

When you go to GDI in a few weeks, ask for a pen, they will give you one if they have them... I use it tons more now that it is in a pen.

To the thread question... It was fine (IMO) to up your own dose, it is supposed to go scaled up, as listed on their website. I haven't gone higher than 45mcg (7.5 units), coz of the nausea, but it still seems to do its job.

It is designed to work with insulin, so it wouldn't work well with T2s, unless it was with insulin...

I will definitely ask for one. I haven't had to use syringes in so long, I have a hard time pulling them out. It just feels weird. When school's out I'll be able to play with it more and watch for the likely lows.

[PepsiLvr]

Originally Posted by It Ain't Over

How are the post prandials BG's doing? That seems to be where the benefits are, along with the weight loss. I lost 25 lbs right off, have leveled out since then. My A1c's went down about a percentage point too. Not bad.

My post meal BG's are doing pretty good IMO. It seems to help stabilize things. Did you loose weight because you were eating less or taking less insulin?

Also, did you notice feeling fuller at all? I really don't feel any fuller than I used to. I have a problem where I NEVER feel full, even after a huge meal. I don't know why. I always mention it to my doc and neurologist but they don't seem to have an answer or suggestions. They ran thyroid tests but they are all fine. I may feel some sense of being full but not enough to make me not want to eat.

[bernfarr]

I started on Symlin sometime last year. My endo gave me some sample vials after I'd asked about it. I started on the lowest dose and gradually increased. Later I talked with Gary Scheiner about it and he advised me to figure out the right dose at breakfast, then start to use it at other meals. Eventually I worked my way up to 90 mcg.

Nowadays I don't take it as much, just laziness on my part. For me, I reduce my bolus and extended it to about 90 minutes.

Once I got past my nausea I did feel fuller, it was very strange to feel that way again.

Do be careful about the lows, they're hard to treat because the Symlin is slowing down absorbtion of any food you eat or drink. I figured out a way to treat lows that has worked for me.

[Blue Dog]

I self-adjust my insulin and symlin. Then I keep careful track of my blood sugars and get my doctor to change my prescription. I use 20 units of Symlin three times a day.

For me, it's helped tremendously in controlling my appetite. I was over 300 pounds and since going on Symlin I've dropped down to 259. This has allowed me to reduce my insulin.

I did have trouble with the lows especially at night (I'd wake up with the sweats). But I seem to have it balanced for now. As I lose weight, I expect I'll have to adjust again.

For me, Symlin has been a real benefit. It helped me to stick to a new eating plan and as I lost weight, I have started to exercise. So my weight loss is not all due to Symlin, but I give it a lot of credit for helping me stick to a more healthy diet.