What is the catch? This is too good to be true

Replies to This Discussion

Permalink Reply by Denise on July 12, 2009 at 9:37am

no weird side effects that I have read of, heard of or seen--been about 4 months for me..no real weight loss but sure a large improvement in the spikes!

▶ Reply to This

Permalink Reply by Scott Strumello on July 12, 2009 at 12:42pm

I'm not sure it's too good to be true; its more like adding a hormone which is supposed to be present in the body back in, therefore the body is working more like it is supposed to than with using insulin alone.

I think the main reason more people with diabetes aren't using Symlin is twofold: #1) there aren't many doctors out there (even among endocrinologists) who are well-versed and experienced using Symlin, and truthfully, the manufacturer (Amylin/Eli Lilly) have not done much to really push this drug, they've been focused almost exclusively on their blockbuster type 2 med Byetta, with the latest focus on getting FDA approval for an extended release version of that billion-dollar+ drug. #2) Many patients find Symlin adds another layer of complexity to managing an already difficult condition using insulin alone (note: I am referring only to type 1 patients here). Finally, let me add that some users have found that if they experience hypoglycemia while using Symlin, they find it much more challenging to treat those lows relative to using insulin alone. My own endo is taking a very cautious approach to Symlin, but wants to hold off on it until there is a bit more published medical literature on using this new biosynthetic human hormone (which is completely absent in all patients with type 1 diabetes).

▶ Reply to This

Permalink Reply by Spooky on July 13, 2009 at 11:00pm

thanks for the very informative reply. I am lucky enough to have one of the top diabetes doctors in the world, and I am so grateful and really think she is amazing. This must be why she was on board to have me try Symlin. It has taken a lot of work for me and I feel like even more of a pin cushion testing 10+ times a day.

My doctor has an interesting approach which has really made the transition easier for me. I test, take 1/2 the correction I would normally take, take the Symlin, eat, test one hour later. I don't bolus for the meal. This is working like a charm so far.

▶ Reply to This

Permalink Reply by Cheri on September 27, 2009 at 11:01am

Hi Spooky - just wondering how you're doing at this point, now that you have a few months under your belt? I'm just starting.

What do you mean about "1/2 the correction I would normally take.." What correction? If you're taking it just before eating, doesn't that mean it's a bolus - just half strength?

Cheri

▶ Reply to This

Permalink Reply by David on September 28, 2009 at 11:12am

Cheri: I've been on it for about a year also. I take the Symlin, eat, then dose about 1/2 the amount i normally would about an hour after i start eating. It's all about the timing, and that changes depending on your starting point, the # of carbs, and the fat and fiber content of the meal. Sometimes I think there's magic involved cause I don't respond the same even when i eat the same meal. It does work though. If all goes well, my Dexcom curve stays pretty flat, my A1C has improved, and I use less insulin than before.

▶ Reply to This

Permalink Reply by Cheri on September 28, 2009 at 11:42am

Thanks, David. I'm starting it - day 3. I get what you say about "magic" - ya really gotta tune in.
My last A1c was 5.4 - can you believe it??? The only reason I'm going with it is because despite exercise and way low carb, and being very, very careful, I've gained 20 lbs in the year since starting insulin - so I'm figuring that's got to be the insulin so anything I can do to reduce it and hopefully reduce the insulin resistance - well, I'm hoping the weight will come back off.

Cheri

▶ Reply to This

Permalink Reply by Spooky on September 28, 2009 at 3:19pm

It's still helping but the initial weight loss was just that, a quick drop and then no more.
i almost always need some correction- even if it's only 1 unit. My pump calculates everything for me. so, if my bg is 150 it suggests a correction of 1 unit I might just skip the correction and take the symlin and then take the bolus for the meal one hour after I eat. If my bg is high and the correction amount is say 3 units i might take 1.5 units. Take the symlin. test 1 hour later and bolus for the meal then.
Complicated! But it seems to be working. My big problem is i sometimes forget to take the symlin or am not eating enough to warrant a dose of it. Good luck with it!

▶ Reply to This

Permalink Reply by Cheri on September 29, 2009 at 1:11pm

Hi Scott - Symlin is also indicated for Type 2s who are on insulin. I'm going to assume that T2s who no longer have beta cells (or too few) are also lacking amylin.

▶ Reply to This

Permalink Reply by Cheery Love on July 12, 2009 at 11:27pm

ive been on it about 1 year. lost 11 lbs at first but gained back 6 & then stayed the same. not gained any though. my a1c dropped 9.2 to 8.6 to 8.2. big change in my appetite. now i just need to get more xercize = always was the main ingredient. my "prediabetic" friend was put on symlin 1 year ago & has lost 80 lbs. she still shoots up w/ her little pen before meals. has worked well for her. i dont think byetta is comparable to symlin cuz all it does is give you the runs & that aint cool. we all respond differently to everything. i agree that symlin is simply putting back something we should have in the first place. i know i will be continuing symlin, trying to get off the 10 lbs per year i gained on lantus. maybe someday my insurance will cover the omnipod for me. good luck. it seems many of us are learning much more here than we have learned from our drs!.

▶ Reply to This

Permalink Reply by Diane Sudlow on July 29, 2009 at 2:57pm

I have been on Symlin now for a couple of years or so. It has helped me get my weight down about 30# from where it was. I am Type 1 and also have an insulin pump, which I absoloutely love!!! I also have a CGM.....that is a different story. I never had any of the side effects (such as nause) which others say they have had. I take my 10 units SQ before meals that contain >30 grams of carbs daily (3 doses.) I can't imagine not taking it. I get full fast when eating and it is just great!!!! Not too many people seem to know of this.....so spread the word.

▶ Reply to This

Permalink Reply by Spooky on July 29, 2009 at 3:12pm

I am still loving it too. no more terrible highs and no appetite! woo hoo!!
I take 30 units with each meal.

▶ Reply to This