I’ve been having control issues - by that, I mean eating issues, which leads to blood sugar control issues. I’ve been lax, eating what I want when I want. I always take insulin, but let’s just say my CGM readouts for the past several months have been ‘mountainous’, perhaps even ‘Himalayan’.
Almost a week ago, I asked my endo for Victoza, and she was happy to give me some. Day 1 was fine. Days 2 and 3 I felt like death warmed up (nauseous and exhausted). Now I’m on Day 6 and I am loving that CGM line. Partly because my food intake is so reduced - I’m just not hungry/excited to eat. I haven’t stepped on the scale yet, but I must be down.
I haven’t even begun a real dose yet (you start at a half-dose for a week, then go up), but it seems like I’m having pretty awesome results. I haven’t had scary lows (looking at you Symlin).
So - I was wondering what others experiences with it are - anyone been on it for quite some time want to share their experience?
I took Victoza for almost 2 years. I would go through cycles. 2 week ramp up where I felt like I was getting the flu and food was nauseating, and 5-6 months of full strength that had a gradually lessening effect of my eating. Then I would go off it for 4-6 weeks and start again. It’s crazy how the side effects are exactly the same every time.
On a side note, I met a Nove Nordisk rep at TCOYD, who stated that Victoza somehow changes your brain chemistry so you are less hungry… Is it true? I have no idea. I no longer take his drug, and have transitioned to a low cab/high protein/med fat diet with exercise. I am almost never hungry now, and I use significantly less insulin.
I was on it for about a six months. The nausea passed. But I had horrible constipation which is why I stopped it. One of the side effects is supposed to be a reduced appetite.
My favorite addition to my treatment plan. I’ve talked about well it is working for me. Some stomach issues starting up but mellowed after about 2 weeks and by week 3 gone. It has been huge for me with appetite control. I am not hungry at all. I went on it to help with weight issues & post meal spikes. I have lost about 12 pound this past year, using Victoza for about 8 of them. So slow & steady weight loss. Taking less insulin. Overall things look very, very good. But YDMV. I’m very glad I can get it, even though not approved for type1. I did level out at 1.2. 1.8 was too much from a side effect standpoint. Best of luck with your new treatment plan!
On day 9 now and no appetite at all. Down around 4 lbs. I’m not sure how well it’s stopping bg spikes because I haven’t had a big meal since I started it. I’m encouraging a couple of T2 friends to give it a try.
MY endo just had me try Victoza. I’m currently just 5 days into it. We’ll see – so far, I’ve seen little effects, though I do feel dizzy around two hours after I take the injection. I felt some nausea in the afternoon yesterday - dunno if it was from the Victoza or not, since I’m still on a sub-theraputic dose (supposedly - I tend to overreact to most meds, though - especially when it comes to side effects!).
I had similar side effects for the first 8-9 days and whenever I would increase the dosage. It does actually go away. I think the nausea is planned so you desire less food and your eating habits are forced to be modified almost immediately.
Hi All, It’s been a while since I’ve been on the boards…I started Invokana 2.5 years ago and it was fabulous, but seemed like it was starting to lose benefits. I started gaining weight again (after 15 lb weight loss) and got higher postprandial numbers again. I decided to go to the 300 mg dose, and did a little better but not great. Then, I got greedy (for weight loss and blood glucose control) and started a modified ketogenic diet. I say modified because I still ate tons of vegetables (carbs) but did cut out grain/insulin-requiring carbs. Sure enough, 3 weeks into that and I was in euglycemic DKA. One of the worst experiences of my life.
My Endo said I should try switching to Victoza. He prescribed it today and I will start on Saturday. I see different opinions here about when to take it and the degree of side effects. I’m hoping for more weight loss again and better BGs. Question, if I take it at night might I sleep through some of the nausea/dizziness?
Also, how much did you lower your insulin dose in the early days? With invokana I dropped by about 35%. I just did a temp basal on my pump until I was sure it was staying. Any successes with adding Victoza, adjusting insulin levels and not going too low?
BTW, my doctor said that invokana increases risk of DKA because it causes an increase in Glucagon, something they didn’t realize, but feel that it has some role in DKA (which I don’t totally understand). He says that I won’t face that with Victoza and that I could even do lower carb again…
I’m going to be negative here, as one who suffers from gastroparesis (the feeling that Victoza and other similar drugs bring on). I have 24/7 nausea and had major issues with control of my sugars because I couldn’t control when my food would digest and insulin was incredibly hard to manage as a result. Frankly, can’t understand why someone would use a product to create this scenario on purpose.
That said, for those with GP we have to use our insulin after eating, as we don’t know how much we will be able to consume … I generally tested until I saw a rise and then dosed accordingly as best a possible.
Note, that I had no symptoms of GP prior to starting on victoza and then never, never never got rid of them. I’ve gone to great lengths including surgery to no avail…
Victoza has been great for me. It even controlled my glucose with Metformin for about 2 years.
After that it started to lose effectiveness for my beta cells but I found I still needed it in a smaller dose to help control my liver so my meal peaks would come down.
Now after 8 years I am on a pump with Novolog along with 1.2 Victoza and max Metformin.
Thanks for the input! I delayed starting Victoza because I had a lot of travel scheduled for October and I don’t like to change meds while away from home. Today will be day one of Victoza .6 dose. I’m hoping that I don’t get GI side effects. My current regimen of invokana and insulin is okay…but I still get major post prandial spikes. My endocrinologist feels that Victoza will help that exact phenomenon. I’m nervous about starting, just because of the work that I fear it will take to stay in balance. Wish me luck!
I have been on Victoza for awhile. I did notice that it has helped me with my food portion sizes and I lost a bit of weight. For me, there were very little side affects. A few nausea waves but they pass pretty quickly. Unfortunately I have had no success with Victoza helping me blood sugar wise. I still have totally atrocious blood sugar readings. It’s wonderful that this drug is helping some type 1s! Doctors suspect there is something else going on with me, however so it doesn’t work for me.
Travel plans were canceled so I went ahead and started Victoza. I was on invokana and had been able to adjust my insulin down by about 30-40% of my insulin-alone regimen. I stopped invokana and am now ramped up to the full Victoza dose of 1.8mg for the last week. I’m running my basal at about 160% of what it was on invokana :(, but I still have high blood sugars overall. Does anyone know how long Victoza should be on board before affecting blood sugars? I had hoped to stay on a lower dose of insulin. I feel like I’m dumping it in with the higher basal and tons of corrections.
I did start using the dual wave bolus on my pump to better match the glucose absorption on Victoza which is definitely slower. I think once I get my insulin regimen a little more regulated I will have better postprandial numbers than I was on invokan/insulin.
I have very little appetite and not a lot of interest in eating, I also get full pretty quickly. The only side effect I seem to have (after starting the high dose) is heartburn. I will do prilosec for two weeks and see if that’s long enough for the side effect to pass. It’s pretty painful.
In the end, if it doesn’t go away and I don’t start to see enough improvement in my blood sugars, I might stop. In the back of my mind I’m considering low dose invokana/decreased insulin/1.2mg victoza in combination.
Welcome to gastroparesis… Victoza is NOT insulin it delays the emptying of the stomach which means that your bolus needs to be timed to the release of contents of your stomach to the blood stream - not the standard 2 hours or before eating type of thing. MOST diabetics with gastroparesis (full-time) bolus AFTER eating when they see a rise or feel the food moving through. This is ONE reason why MOST type 1 shouldn’t use this product… among others…it messes with our sugar levels and timing of insulin…
Thank you so much for your comments. I also read your prior remarks and I do understand how Victoza is changing things. I don’t want GP, obviously, but also struggled with very high postprandials despite dosing the right amount of insulin for my carb ratios. I’m not sure how else to bring that down without going totally carb free. While on invokana, that was a dangerous proposition given the increased risk of DKA. I did try a very low carb diet when I was on high does invokana, and was hospitalized with euglycemic DKA back in June. Hence, my arrival at Victoza. I’m trying to find the right balance with the lesser of the evils. I’m still trying to decide what that will look like for me.
Hi Rachel,
I think my post was a little hasty and needed more explaining. What I was trying to say is that with GP (perm like mine or induced by Victoza) you may have to change your insulin dosing and even the brands … working with your endo of course.
Because my digestion is delayed, I can drop low or spike high very quickly - yours is likely not as severe. I have a different routine than most people due to this, I take my insulin AFTER meals when my sugars rise, testing every half to an hour. I take a rapid acting insulin that lasts for a few hours (Apidra) that is in my system in 15 min. I take my long-acting in the evening, but due to lows in the morning I’ve been advised to start taking it in the mornings now. I had to change my long acting to Tresiba because the other didn’t work for me and I was taking huge amounts (30 units of Levimer vs. 6 tresiba).
Fiber, protein all work to slow digestion down but help with the moderation of the sugar spike. Also, due to slow digestion if I’m low I have to have something I can swish around my mouth so that it can be absorbed in my soft tissue of the cheek rather than the stomach…you may want to work with a nutritionist familiar with diabetes and slow digestion to get a sense of what will help you out with the Carbs and the spikes.
Thank you! Good ideas. Today was my first workout immediately after a meal. I used to be able to cut my insulin dose in half and let exercise take care of the rest. That didn’t seem to work this morning because of the slowed absorption. During the workout was fine, but of course, now my glucose is going up as the carbs are finally being absorbed. It’s an interesting phenomenon for sure and I will have to keep tinkering.
I’m happy that my weight is down by a couple of pounds so far. I’m presuming it’s because of not being able to eat as much. I haven’t been able to lower my insulin at all (in fact I’m taking more since switching from invokana to victoza).
It’s so interesting that tresiba is so much more potent for you. Thanks for all of your tips, I’m so sorry for the struggles with GP for you. I appreciate all of your advice.
Victoza has three different mechanisms: increases insulin production from the pancreas (if yours is still functioning, mine is not as a type 1), it slows gastric absorption of nutrients/carbs, and decreases the amount of glucagon released by the liver.
All of those things can possibly result in lower postprandial blood glucose readings, decreased appetite, decreased food cravings, potentially lower insulin intake, etc… It has helped with weight loss as a side effect in the cllinical trials, though it’s not intended to be a weight loss medication.
Just checking in. I am one of those type 1’s using Victoza off label with great success. Side effects were minimal and benefits were great! I have lost a lot of weight, gone down a lot in pant size and have had some of the best A1C’s ever. That being said, I am getting ready to enter another clinical trial and I have to come off it. My biggest concern is the weight. I mean, I have a whole new wardrobe! I don’t want to have to buy bigger clothes again! I have been off for about 2 weeks and gained 3 pounds. Kinda scary! I am pushing more exercise and really trying to limit portion sizes but it is amazing how much the Victoza helped decrease appetite. I can only hope that once this next trial starts up, I can clear it quickly and get back on it again. And wait for the next clinical trial. I know, my results might be unusual, but I loved the benefits and I went with it instead of Invokana due to the fact I didn’t want to go down that UTI, yeast infection route. Hope it helps you as much as it did me!
One of the worst experiences of my life.
Doctors suspect there is something else going on with me, however so it doesn’t work for me.