I recently saw a new endo and am seeing her again at the end of this month. After going over my data with me she suggested I might want to try Victoza. I’m a T1, so it’s “off-label” but she’s seen good results with T1 where it attenuates the high/low range and assists in weight loss by helping to decrease insulin daily dose. Those are both concerns for me, as I’m exercising a lot more to help get my weight down and experiencing some difficulty with exercise-induced lows. She said she might give me a sample to try when we meet, so I’d like to hear about anyone else’s experiences, particularly T1s but also T2s. Love it? Hate it? Side effects or downsides?
(BTW, I do see that there was a thread on this several years ago, but I don’t know if any of those people are still around and I would like to get a fresher take on it.)
I have been taking Jardiance for close to 6 months. It’s an invokana type med only approved for T2’s. I have had tremendous results with it. Lower A1c and lower post meal spikes. I’ve lost about 10 pounds with it too, since my TDD has dropped from 55-24 units. I have had T1 for 31 years.
Side effects? None. But, I was told to drink A LOT of water to avoid UTI’s. SO far so good. Also, since it’s only approved for T2’s, my endo has been providing samples to me.
I took Victoza for almost a year before I knew I was T1 and didn’t have a very good experience with it. At first it really helped get my A1Cs in line, went from a little over 7 to just under 6 in a 3 month period. This success didn’t last long though and the next 3 month cycle I was back in the mid 6s and the next in the high 6s. During this time period I kept increasing the dose to the point where I could barely tolerate the side effects, which for me never did go away. The side effects were continual nausea and a complete lose of appetite, to the point where my wife had to remind me to eat. I finally gave up on using it after ~12 months by which time I’d lost close to 20 lbs (went from 175 to 155) and my A1Cs were back in the 7s.
This experience is what prompted my endo to test me for indications of T1 which came up positive and I switched to insulin.
My understanding of how it works is that it promotes production of insulin in the pancreas, reduces glucagon production in the liver and slows emptying of the stomach. Not sure what it’ll do for insulin production in a T1 or if it’s a bad thing to beat on the pancreas to produce insulin but the other effects might be helpful.
Personally I’ll never use it again!!
I’ve never had it actually tested but various endos over the years including the new one think I’m probably still producing some insulin, so that may be why she thinks it could help. Your experience makes me more apprehensive, though it does sound like you were taking a lot more of it than I would because due to the misdiagnosis they had you using it exclusively.
I was tested a few years ago, at the time my insulin production was at the very bottom of the normal range, I imagine it’s below normal now. Just for reference according to my pump my average daily insulin usage is ~24 units and daily average carbs is close to 183. I don’t know how close that is to other T1s but it seems to me my daily dose of insulin is relatively low which leads me to believe I still make some insulin. I’m sure the Victoza helped increase the production but it didn’t seem to last very long for me, maybe you’ll have a different reaction.
FWIW my current averages are TDD: 46, carbs: 51. “Carbs” is skewed high though because it includes adjusting for fats and the fact that my morning coffee seems to act like 20 grams or thereabouts even though I don’t actually put any carbs in it. In other words, I’m not a super hardcore low-carb fanatic but I do try to keep them minimal because they just seem to make things more complicated.
@DrBB,
Thanks for posting that, I find it enlightening to see what another T1’s daily usage is compared to mine.
I must be making more insulin than I thought but I wonder long it will last? I was diagnosed as T1 close to 2 years ago and my numbers really haven’t changed much over that time. I was diagnosed as a diabetic in 2000 and things have degraded since then.
At one point my endo made the comment that she considered it destructive of the capacity I still have to beat on my pancreas with a drug like Victoza. Apparently she thinks it would accelerate the degradation but I have no idea on what data she based that thought.
It’s my understanding that almost everyone diagnosed with Type 1 as an adult still produces some detectable amount of insulin. For kids (diagnosed before puberty), I think it’s only a small percentage that still produce a detectable amount of insulin.
I’ve never used Victoza, but I know someone who used it and said it was like a miracle drug. So, I’m guessing that even if one produces little to no insulin, the other effects are positive for Type 1s.
I am a bit confused about why something like Victoza is so popular while Symlin (which, from what I’ve read, has almsot identical effects) is so unpopular. I think if I were ever to try something in addition to insulin, I’d be more interested in using Symlin to replace a hormone I wasn’t producing, rather than using a more artificial drug. But, Symlin isn’t available here in Canada, and my endocrinologist has never mentioned Victoza to me.
My brother just tried Victoza and it was a disaster…when they turned his insulin down he went into DK. vomiting, leg cramps, and shortness of breath…classic symptoms. He stopped after two weeks of hell and it has taken him weeks to get back to his old self.
His BG average went through the roof as soon as he started taking the Victoza, I work with him every day and his normal 100mg/dL blood sugars went to 250mg/dL over night and he sure didn’t have to worry about going low on the Victoza.
I haven’t replied to this discussion, but I feel compelled to. Understand I am T2 but I took both Byetta and Victoza and studied them both closely. They are both GLP-1 drugs, a class of drugs that mimic key incretin hormones. The GLP-1 drugs have a key action of inhibiting glucagon and stimulating insulin release in response to eating. For a T1, the insulin stimulation just won’t work, but the glucagon effect can be significant. When we eat, particularly if we eat something big, our bodies will release glucagon and insulin in response to simply the act of eating. Bernstein calls this the Chinese Restaurant Effect. This is different than insulin being released in response to a high blood sugar and instead is focused on enabling a complex dance of preemptive control of blood sugar in response to meals. That being said, even as a T1, when you eat you can and will release glucagon and that can result in a contribution to your mealtime blood sugar. So a GLP-1 may help a T1 get better mealtime control, perhaps using less insulin or just improving postprandial levels.
It is also true that the GLP-1 drugs lower both hunger and appetite and have been shown to help people lose weight. My observation is the GLP-1 drugs are mostly being prescribed to T1s for their effect on hunger, appetite and weight loss. That being said, the use of GLP-1 drugs for T1 is not FDA approved and while doctors can prescribe it off-label there is apparently lots of confusion. The [prescribing information on Victoza][1] basically says not to use it for T1 and provides absolutely no information on how to adjust insulin dosing with Victoza. There are ongoing studies on T1 use of GLP-1 drugs and I would anticipate FDA approval for their use in T1 in the near future.
And it is the last thing which alarms me. Nobody should think a drug like a GLP-1 can replace insulin. Why a doctor would advise a patient to turn their insulin down so low as to induce DKA is just bizarre. As far as I know, none of the GLP-1 drugs have ever been reported to induce hyperglycemia, their action is uniformly in the other direction. The proper way to adjust insulin with a GLP-1 is to keep basal the same and then start with an assumption that mealtime boluses can be reduced. A conservative approach would be to reduce mealtime boluses, perhaps by 50%. You could also split mealtime boluses, taking half at the meal and then half at one to two hours as a way of gauging what change is needed to mealtime boluses.
ps. Victoza has been reported in type 2 patients to preserve (or restore, not that I believe this tho) beta cell function. It is not clear if this is a real effect or simple reflects better control. And I don’t think anyone should think this would apply to T1.
pps. My experience with Byetta and Victoza was “mixed.” I was a short term “super responder” to both drugs. I became essentially non-diabetic. Unfortunately the effect only lasted 2-3 weeks after which the drugs had no effect. I had similar short term success with a number of drugs, but all essentially failed after a couple of weeks (except the SGLT2s which keep on pumping). But remember, everyone is different.
[1]: http://www.novo-pi.com/victoza.pdf
Hi there. I am a Type 1 of almost 47 years, I know nothing about this but would love to know more. I have a Medtromic pump with CGM. I.m in Canada. Please write back. I’m out f town for 2 more days recovering from cut handtendons. Yay.
Brian, when I asked my endo why he is prescribing Victoza to me to treat early LADA he stated that it helps to reduce inflammation and can act on first phase insulin response. He also mentioned about restoring Beta Cell function in some patients with pre-diabetes, but didn’t know if it would have the same effect on a LADA patient. He stressed there are cardiovascular benefits too. Since I am in the early stage I still produce insulin, which at times over corrects if I eat too many carbs, Victoza has been consistently helping my post-meal numbers. One of my concerns is the comment someone made in this post or another about it wearing out the pancreas and/or accelerating the progression to full insulin dependency.
The studies of GLP-1 which have been used to argue that it “preserves” beta cell mass or beta cell function are based on it being a “durable” therapy. Most type 2 medications are not durable, they fail over time, and studies seem to show that on average medications fail after just a few years and type 2 patients either have to change/add medications or move to insulin. I’ve not seen any reference to GLP-1 drugs wearing out the pancreas or accelerating the progression. I will tell you what I have seen is that the class of drugs known as sulfonylureas are said to “burn out” your pancreas and hasten the progression to insulin.
Personally I feel that the best way to slow the progression of diabetes is tight blood sugar control. It is known that high blood sugars (anything over about 140 mg/dl) start to poison the beta cells. I believe this glucotoxicity is a major factor in diabetes progression. If the GLP-1 can help limit your blood sugar excursions it may slow your progression.
Thanks Brian, a really helpful response as always.
That part made no sense to me either–my endo isn’t suggesting this as a substitute for insulin, and I’ve never had any endo be anything but exceedingly cautious and incremental about basal changes and treatment modifications. Seems like what that person went through had more to do with bad therapeutic practice than with the drug per se.
This was pretty much the context of the discussion with my new endo. The big problem I’ve been struggling with is big post-prandial spikes after midday meal, followed by a fairly steep plunge around time for my homeward bike commute. I’ve been getting home with some pretty nasty lows–like in the 40s. So the challenge is how to keep those spikes down and still have a high enough BG for the ride home. I’ve been experimenting with bolusing an hour or so before lunch so that I see the insulin ramping up before I start eating, and setting a temp basal similarly in advance of my evening commute. Those measures do seem to help, though the key is consistently remembering to do them. The endo suggested that Victoza might be worth a try because it tends to attenuate these crazy fluctuations T1s get. And I wouldn’t mind if it helped me knock some weight off too.
I am now officially at LADA Type 1. I have been on Victoza since Nov 2012, when my blood sugars were raging (at that time I was still considered a Type 2). I am at the maximum dose and for a period of time it helped my blood sugar and I also lost 15 pounds. about 6 months later my blood sugars again were raging and she added Lantus, which seemed to help until late last year when my blood sugars started raging again. Then she finally tested me and found that I was really a type 1 LADA ( my sister has had Type 1 for 17 years) . To date I have not had any side effects from it that I am aware of. When I asked my doc about getting off of Victoza since I was now a Type 1 she said that it can help for a period of time on new Type 1’s because we still make some insulin. I want off of Victoza because of the potential really bad side effects. (I did love the appetite control I had with Victoza) I don’t know at this point if it is helping me or not. When I added Short acting insulin (Novolog) I gained 11 pounds back in less than 2 months, and I don’t get the full feeling with a smaller quantity of food I used to get without Novolog.
I don’t know if that helps you or not, just my experience. Now if only I can get this added 11 pounds off.
My brother does make some insulin, and his doctor felt like he could eliminate (reduce) BG fluctuations and reduce his TDD in the process but the drug made him feel horrible, no apatite and he lost 10 pounds during the first week. The reason for the trial was to see if the drug would eliminate Hypoglycemia (his doctor said it would). My brother is a FAA approved insulin dependent pilot and has to live with a very strict set of rules to keep flying…any recorded hypos will get him grounded, and any on two quarterly reports makes it permanent. The problem with the regulations is if your compliant then you will end up with high BG and A1c’s of 7.0+ which most of us will agree does not meet todays standard and he is just trying anything he can to get predictable BG but had no luck at all with the Victoza and was unable to produce any acceptable daily BG trends.
[ The big problem I’ve been struggling with is big post-prandial spikes after midday meal ] exactly what my Brother was trying to do. I was also interested in seeing if it would correct my massive morning liver dumps…but not after seeing what a pain it was for my brother.
Thanks for the clarification, @JohnG, that’s very helpful. The business about having to meet FAA approval helps explain why your bro and his dr were being so aggressive about dropping the insulin. More aggressive than I need to be, since nobody’s out there certifying my bike piloting abilities. The nausea and severe appetite problems seem to be very much an individual thing–no way to tell until I try it. But it sucks that it didn’t work for him, given the much more stringent situation he’s facing. Must have been frustrating as hell in itself, let alone having to go through a DKA episode like that.
The nausea and severe appetite problems seem to be very much an individual thing–no way to tell until I try it. But it sucks that it didn’t work for him, given the much more stringent situation he’s facing. Must have been frustrating as hell in itself, let alone having to go through a DKA episode like that.