Replies to This Discussion

Permalink Reply by Robert on September 26, 2008 at 11:59am

I've been taking Symlin for about 10 months and about 3 months ago the efficacy of it started to go down, in other words, my insulin requirements have slowly crept up to where they are now 10 - 25% higher than before I began Symlin. Initially on Symlin my insulin requirements dropped about 25% even with a very small dose of Symlin, like 2 units, and now even with a high dose of Symlin, my insulin requirements are higher than ever. It's become extremely difficult and unpredictable to control highs and it's almost like the insulin isn't working, although I've changed vials, both Insulin and Symlin, many times. It should also be noted that the appetite suppression and nausea are gone and while I'm not necessarily eating more, my glucose levels escalate rapidly and stay there.

I'm ready to quit the Symlin to see if my body and sugar control can stabilize as going from 35 units a day 5 months ago to about 55 units a day now is really challenging.

Have you tried to stop and restart the Symlin and what do you discover in your "experiments" with Symlin?

Permalink Reply by Jordana Rosenberg on September 26, 2008 at 12:34pm

Hi Robert, we did stop for about a year and restarted. The efficacy appears to last about four months before insulin requirements creep up again. I would like to have a more biochemically-based understanding of why this is the case, but since I'm not a scientist all I have are observations. So that's the deal for now. We are considering having my partner stop the symlin again for a while and restart. Thanks for responding! Jordana

Permalink Reply by Robert on October 2, 2008 at 8:49am

Thanks for the reply and good luck with your trials on Symlin. I find it frustrating that no matter what issue I call into the Symlin hotline, they have no reports of that issue, but the blogs contain a lot of people are experiencing those same issues. The hotline must not be allowed to report that others have reported an issue without first validating the issue through research or clinical trials.?
All the best.

Permalink Reply by Jordana Rosenberg on October 2, 2008 at 5:33pm

Hi Robert, There's a symlin hotline? What's the number? They don't so particularly helpful, but it'd be good to have the info anyway. Thanks! Jordana

Permalink Reply by Rick on October 28, 2008 at 8:33am

Jordana and symlin group,
I, as most have commented have had similar experience using Symlin for over a year. I too am taking more Humalog now/carb, than I was before the Symlin. I have scheduled an appointment with my endo (who prescribed it) the end of this month and I would like to take some of your comments with me so he can see what real people are experiencing. He had told me at the time of the RX I was one of only 3% of his patients on Symlin. If anyone has an objection to me printing their comments on Symlin (which I will remove your name and any personal info), please let me know. Thanks for your contributions to this great site.
Rick Blace

Permalink Reply by Maden on April 23, 2009 at 3:08am

Okay... so I am suppose to start on Symlin this week, but after reading this & I think shouldn't... what do you think? Would you have ever started if you knew this would happen a year down the road?

Permalink Reply by Jordana Rosenberg on April 23, 2009 at 6:57am

Hi Maden,

I think others are more qualified to respond to this than I am, because I am not taking Symlin -- my partner is, so she would know better than I do. I guess I would say to talk it over with your doctor. Apparently there are some functions that Symlin fulfills that aren't always directly reflected in insulin requirements. But, there is a lot of changing information on how Symlin works, so I would make sure your doctor is clear with you about the pros and cons.

Permalink Reply by Jason on April 23, 2009 at 8:13am

I have been using Symlin for approximately 9 months and it is as efficacious as it ever has been. The weight has stayed off, and my insulin sensitivity certainly has not gone down. On the contrary, I know for a fact that if I were to even use half the insulin I would normally take for a non-Symlin mediated meal while using Symlin it would result in severe hypoglycemia.

I should also mention that I am a very active person, exercising strenuously several times per week and closely monitoring my diet. I don't know if that has anything to do with it but Symlin is crucial to effectively managing my diabetes. I won't eat a meal without it.

Amylin is due to release a Symlin "2.0" sometime in 2010 from what I understand. I would speak to your Endocrinologist and also to Amylin to see what they both have to say.

Permalink Reply by Paloma on May 22, 2009 at 6:13pm

Jason,
Your reply, above, is exactly why I joined this forum: To learn from others who are taking the same meds!

I think your point about exercise is important. I intend to rachet up my meager workout; do something every day instead of intermittently, possibly alternating walking and strength training.

Also, I am interested to know about your diet. I am mostly doing low-carb vegetarian. What has worked for you? Do you strictly adhere to the 250 calorie or 30 g carb meals w/Symlin? I don't eat 30 g carbs in a DAY!!!

Thank you!