Replies to This Discussion

Permalink Reply by sophiaofthrace on November 11, 2010 at 10:29am

I am also a Type 1 diabetic. I have been on insulin for 28 years. I have been on Victoza for a little over a month. I have a Paradigm pump but am getting a Revel which has a few features that work better with the Sensor. I would highly recommend using a Sensor if you have one and set the lower limit alarm. My experience is that once you get on the higher dose of Victoza, you get some fairly nasty lows.

My results have been that my A1C has gone down a little bit. I have lost 5 pounds. I have less digestive problems. I seem to have a little more energy. And best of all, my blood sugars don't peak so much. They are within target range about 30% more of the time than a month ago.

There are a few downsides though. First of all, it can be tricky to adjust insulin levels. Now that I am on the normal dose, I get more lows. Also because of the delayed digestion, my food can make my blood sugar rise a couple hours after I have eaten. And it can take a little longer to recover from lows as well. Be sure to use something like juice that is fast acting.

My doctor was going to put me on Symlin because I have had weight trouble since becoming diabetic, and can eat a large amount and not feel full... and even be hungry again a few hours later. He said it was because my body lacked a certain enzyme, so it dumped my food into my system all at once and I wouldn't feel full. My blood sugar would spike quickly after meals and then I would be hungry again once it went back down. Even since childhood, I have always gained weight every time my insulin dose was increased. For some reason though, my doctor thought I would respond better to Victoza which is similar, but it's natural form is made in a different part of the body. And if I understand right, Victoza has an added benefit that Symlin doesn't. Victoza delays digestion, suppresses the liver from creating sugar, and stimulates beta cells (if what I have read is accurate).

But here's the real kicker. Getting my insurance to cover. I've been using samples, but I'm sure my doctor's office isn't going to offer to supply it for me. The high cost of paying for it myself would be out of the question. Not only is Victoza not approved for Type 1 (though Novo is supposedly working on this) and not approved for use with insulin, it is also supposed to be a secondary drug used in conjunction with another or only after another drug like Metformin has been tried. I haven't used Metformin. I don't even know that it would be suitable for me. So I'm waiting for the insurance to deny it, and see what happens next.

Permalink Reply by Katrina Schindler on November 11, 2010 at 10:51am

Sophia - thanks for your feedback - it's really helpful to hear from another Type 1 that is actually on Victoza!! The whole eating a TON and not feeling full sounds sooooooooo familiar! I was diagnosed when I was 13 and for all these years just exercised all the time and exercised a LOT of will power to keep my eating in line - but I would always be hungry no matter who much I ate or how physically full I was. Symlin was such an AMAZING God-send it just seemed to flip a switch and I stopped thinking about food constantly and for the first time in over 15 years I was able to finish a normal meal and just be full! Symlin hasn't really cut down my insulin requirement though - more of an adjustment in timing of boluses etc.

About the beta-cell stimulation...I'm thinking we don't have ANY so we probably don't get any benefit from that part of Victoza?? Also I've wondered if there was some way to grow back the beta cells wouldn't our bodies just attack them all over again? But thats probably a whole diff discussion...lol :-)

I'm cringing about dealing with my insurance on this - my doctor says that I'm probably a Type 1.5...i.e. a Type 1 with certain Type II characteristics. I'm not overweight (never have been) but I'm def insulin resistant. I have a pretty good plan with Aetna so I'm hoping that they'll cover it. Fingers crossed!

I'm getting the Revel too!!!! They just called me this morning and said they're sending it out today...yay!! I'm also trying to get the CGM from minimed - but have to go through insurance stuff and figure it out. Thanks for the warning about the lows! How much are you taking right now? And do you notice more control with higer doeses? Also did you get any nausea when you bumped up to higher doses??

Permalink Reply by sophiaofthrace on November 11, 2010 at 12:09pm

I haven't really seen much reduction in insulin with Victoza, other than less at meals because I am eating less. Does Symlin stabilize your blood sugars at all? And have you had any trouble with insurance? I've heard some of these types of drugs cause nausea too.

I seriously doubt I have any functioning beta cells. Some diabetics have had beta cell transplants, but it has to be repeated over and over because the body still has the autoimmune antibodies that attack them.

I took the lower dose of Victoza for 2 weeks instead of 1, then went up to the regular dose, and haven't been nauseated at all. I am on about 61 units basal, and I vary around 50% of my total insulin for my bolus. I don't know that my control improved much with the higher dose from the lower. Just more lows. But that probably means my insulin needs to be adjusted. It's just hard to know how and when because my body doesn't react the same way to food now. And I'm horrible at staying on a structured schedule.

BTW, if you fall in the lower income bracket, there are some medical supply companies that will write off your coinsurance on pump and Sensor supplies. :)

Permalink Reply by Katrina Schindler on November 15, 2010 at 10:53am

I wouldn't say that Symlin does much to stabilize blood sugars - just kind of changes the timing of when you need to bolus....def no problems with insurance. I didn't have much nausea at all - in fact the only time I would get nauseous was if I took the Symlin in the morning and didn't ear right away. I woudl take the shot and then go dry my hair and put my makeup on so there was like a good 20 min gap and that just resulted in horrible nausea. But as long as you eat right away it shouldn't be a problem.

I get what you mean about figuring out how your requirments have changed....I'm trying to figure out when Victoza is peaking in my system and how long it delays the food hitting my system....

Permalink Reply by sophiaofthrace on November 15, 2010 at 11:05am

Does Symlin also suppress the liver from creating glucose? I heard that Victoza does. I'm not really clear on what the difference is other than Victoza stimulating beta cells. But for some reason, my doctor has found that Victoza seems to benefit Type 1s better than Symlin. I have never heard of anyone taking both.

Permalink Reply by Katrina Schindler on November 15, 2010 at 11:15am

Yes, Symlin is supposed to control the liver's relesase of glucose into the system. Honestly, it sounds like Symlin and Victoza do almost exactly the same things - but they're both created by the body - so I guess the body controls these things from more than one place! Victoza does kind of make me nervous though just becasuse it's such a new drug (even if it is human recombinant dna origin) and it has a black box warning for cancer...lol! The other thing I'm not clear about is: do Type 1's already create this substance in their body? I like Symlin becasue it's replacing something that the beta cells would normally produce - so I know I'm just replacing something that shoudl be here. WIth Victoza I'm not sure if it's replacing something or merely adding something....

Permalink Reply by sophiaofthrace on November 15, 2010 at 11:55am

Yes, good question. Though I am wondering if I don't lack more than just Amylin. My doc said that one of my labs indicated that there was something going on with my metabolism but he didn't go into details.

Permalink Reply by kerri pollack on November 14, 2010 at 4:44pm

i have'nt read any thing good about VICTOZA . please be careful everyone

Permalink Reply by sophiaofthrace on November 15, 2010 at 7:47am

All the research I've read seems to suggest it gives better results than Byetta with Type 2s, but I haven't seen any research with Type 1 patients. I did read that Novo was working towards getting it approved for Type 1s though.

I wish there was a side by side comparison of Symlin and Victoza.

Permalink Reply by Katrina Schindler on November 15, 2010 at 11:05am

So this is my 6th day on Victoza - jumped up to 1.2 on the 3rd day. I take it every morning at 8:30. So far my insulin requirment is down quite a bit - probably by about 15 units/day, but this may simply be because I'm eating less. This def reduces your appetite. I'm wondering if I'm getting a compound effect though because I'm taking Symlin too, because quite frankly I just don't even want to eat....I get really full on very little and if I eat carbs then I feel stuffed for hours - I have to write down what I've eaten just so I can realize how little I've actually eaten so I don't over-bolus based on my full feeling. I'm thrown off on my bolus schedule completely because I'll eat and either take no insulin or very little and my blood sugar will be stable with no spikes for a few hours and then suddenly I will go from around 118 to 278 in ONE hour...it's like the food was finally released and just bombed my system! I'm still trying to figure out timing and how Victoza delays the food hitting the system. And the annoying thing is that so far it's random and the high spikes aren't consistent - they just seem to come out of no-where! Needless to say, this is making it very hard to schedule my exercise! Also getting dry mouth - it's really, really misleading because I'll wake up with extreme dry mouth and think "OMG - I must be at like 300" and I'll test and my AM BG is 121....very misleading since I'm used to that dry-mouth feeling when I'm high. Also getting dry mouth throughout the day...very odd side-effect - not sure if anyone else has gotten that. I would say overall, it seems to be somewhat helpful...will probably be more helpful when I can get a better feel for timing, but right now I'm on the fence about it....not sure I can live on such reduced calories...lol!

Permalink Reply by sophiaofthrace on November 15, 2010 at 11:09am

It probably won't suppress your appetite as strongly once you have been on 1.2 for a while. At least that's my experience. I agree about the dry mouth symptom too.

Permalink Reply by Lynn on November 16, 2010 at 1:20pm

New to the site. T1 for almost 40 years, Minimed Revel and CGM. Have had weight issues since adolescence - always about 15-25 lbs overweight. In recent years, and especially since going on the pump around 3 years ago and using CGM a little after that, have put on more weight. Classic signs of insulin resistance per my endo.

I had been on Symlin regularly since April and had a lot of success with weight loss - lost about 25 lbs and was feeling great. It basically makes you fuller when taken before meals so that you dont eat as much. For me I could only eat about half what I did before I went on it. The key for me with Symlin was taking it at least 15 minutes and ideally more like 20-30 before eating so it had time to kick in before I started eating. The other positive side effect was it slowed stomach emptying so my post meal spikes were a lot less. However, it does just shift the spike out to about 1 1/2 hours after you eat. I also was fortunate that I didnt have any nausea when I took it and was able to go up to the highest recommended dose within a couple weeks of starting it. Anyway, Symlin was like a miracle for me until it started to lose its effect. Over time I found I didnt feel full anymore after taking it and of course then the lbs started coming back on. I had gained about half the weight back, then my endo suggested I try a Symlin holiday for a couple weeks to see if starting and stopping it again would make it more effective again.

While on the Symlin holiday I found the article by Kelly Close in DiaTribe about her experience with Victoza. I know Kelly and so was interested in trying it. My endo agreed to let me try it - he runs a large Diabetes center at the University of Chicago hospital where they treat hundreds if not thousands of diabetics, and Im his first T1 patient on it.

The experience has been mixed, but overall positive. Unlike with Symlin I did have side effects as many others here have reported. Generally I felt like I had the flu much of the first couple weeks. Not a ton of nausea but generally feeling sluggish, very tired, and having a dull headache often. I did lose my lunch twice on a day when I tried upping the dose too quickly (apparently).

Now in my 3rd week on it Im taking a couple clicks above 1.2 (I guess thats about 1.5 or so) and feeling better most of the time. My appetite has decreased considerably, as have my basals. I generally have almost no appetite, and sometimes have to make sure I eat. Ive lost about 7 pounds thus far, but will no doubt lose more if I keep eating as little as I have been the last couple weeks. Bloos sugras also have been much flatter overall and seen also to be more consistent. I can stay within a 10 point range (or less) now for hours at a time which was pretty rare before.

Adjusting insulin has been tricky and I am far from having figured it out. One thing Ive struggled with is that I work out regularly, usually snacking as needed to get my bg up around 180 before I start. With Victoza, I cant seem to get the bg to rise so Ive had many workouts cut short. These are however the only real lows I have experienced, other than a few as Ive adjusted my basals throughout the day downward. My problem is figuring out how long before I exercise I need to eat something to get the apike timed right. Appreciate any insights from others on this one.

Im also still trying to figure out where the spike occurs after meals. I think its occuring even later than with Symlin - so more like 2-3 hours after eating, but the spikes Im getting are so small its hard to detect them. Again appreciate any thoughts on this from others.

Overall, very positive with Victoza, though to be clear its a learning process still in its early stages. If the weight loss continues Im more than happy to tolerate the occasional headache and adjust my snacking to accommodate workouts.

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