Any T-1's on Victoza?

I’m an insulin resistant Type 1 and was reading an article in diaTribe’s current newsletter written by a Type 1 who was using Victoza and experiencing some remarkable flattening of her lows and highs. I know this is a Type II drug and it is considered off-label use for Type I’s but I know some doctors are prescribing it for their Type I patients. I’m going to see my doctor on the 9th and am going to ask him to let me try this - but was wondering if there were any other Type 1’s out there that could give some feedback on their experiences. I’m currently on the Minimed 722 pump (LOVE it) and I also take Symlin (really LOVE it). It sounds like Victoza might be another thing that could help with insulin resistance! Thanks!!

Hi Katrina welcome to the victoza discussions

I’m also a T1 and I just finished the diaTribe article written by editor Kelly Close. I’m very interested in this as well. Kelly reports better control with Victoza and her total daily insulin dose has markedly dropped. As a result she has lost weight.

Katrina, please report back here what your doctor has to say regarding the “off-label” use. I’m also curious if your insurance will pay for this. I’m not scheduled to see my endo until January.

Any T1s taking this med??? We’d like to hear from you.

Victoza has two primary effects, it amplifies the signaling when you eat, improving the secretion of insulin. And second, it delays stomach emptying, making you feel full. For many T1s, it is this second effect that matters, because most off-label use of Byetta and Victoza appears to be as a way of reducing appetite and helping to lose weight.

But understand, I don’t personally believe in the black and white world separating diabetes into T1 and T2, and the argument that they are not related. It is entirely reasonable to think that a T1 could still retain some level of insulin production and that remaining beta cell function can make a real difference in the control you can achieve. Using Victoza may well have a real effect on that remaining beta cell function.

It truth, I think you have a hard time convincing most doctors that you want to try Victoza cause you think it will help improve you insulin secretion response, but you may well be successful saying you want to try it to address uncontrollable hunger and get your weight down. Just my opinion.

Yeah, I agree that elements of T2 can be present in a T1. I had a test done years, and years ago (I’ve had T1 for about 15 years) to see if I had any beta cell function left and it was pretty much nill - and that was a decade ago! But I am insulin resistant (a T2 trait) so I’m thinking this might address that issue? In all honesty, it sounds like Victoza does the exact same thing as Symlin (regulates gastric emptying, regulates the liver dumping sugar into the system, and signaling the brain that you are satisfied), but since both of these drugs sound like they are simply replacements for something the human body produces (or should produce) it just seems that the body regulates these things from more than one place!

I’m def not going to try to sell the doctor on the idea that I might have some beta cell function left…lol! I’m going to try and play the T2 angle and suggest that it might help with decreasing my resistance. The only concern I have is how it would interact with Symlin.

Anyway, thanks for explanation and the comments - any kind of info helps!! :slight_smile:

Thank you :slight_smile:

Just as a side note - I noticed on the lab order that I picked up to get my blood draw that my doctor is testing me for Type 2. Very odd to me! I’m not overweight and never have been - but I think because I have insulin resistance he is thinking that I might have some odd combination of the T1 and T2 - so IF he finds some elements of T2 present it would probably make the insurance issue a lot easier…but either way I’ll update after my appointment :slight_smile:

Well, good news - I saw my doctor yesterday and he gave me a sample pen of Victoza to try! I’ve just taken 0.6 around 11:30AM and am going to see how that works. Does anyone have any recommendations about what the best time of day to take this is?? The literature that comes with it says it can be taken “independently of food” so I’m taking it between meals since I don’t want to take it at the same time as my Symlin. I’m excited to see if this has any effect on my control or anything! Although since I’m resistant to insulin AND symlin I wouldn’t be surprised if I had to up my dose to the max before I see any results! I’ll update here as I progress! :slight_smile:

Victoza can be taken at any time, just take it consistently. Byetta has to be taken right before eating, just like insulin, which is why the use of the phrase “independently of food.” Perhaps first thing in the morning is best.

I will be interested in how this works out for you.

I would guess that he is doing this to increase the chances that your insurance will cover. Victoza is only approved for Type 2 diabetics not using insulin.

I’m not sure by definition that someone can have both types. However, Type 1s CAN have symptoms associated with Type 2. Like increased insulin resistance which requires more insulin to keep blood sugar levels under control.

According to my doc, it may be counterproductive to say you want to use Victoza for weight loss because most insurance companies don’t cover prescriptions for that reason. Rather, it is better to say it is being used to help control blood sugars (even if weight loss is an added benefit.)

I don’t think it matters so much when you take it as that you take it consistently. It does seem to make a difference to me if I don’t take it within 25 or 26 hours of my last dose. And I suspect there is a peak or at least a point where it becomes less effective in the body, but I haven’t quite figured that out yet.

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.

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 :slight_smile:

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??

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. :slight_smile:

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

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.

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…

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!