My increased weight due to insulin led to more insulin and more weight. I gained 30lbs and blood pressure went crazy. My Endo and I agreed to try Invokana. So far my sugars have been much better, I use less insulin, and Ive lost 10lbs. No high or low buzzers...I cant be happier.
I have had Type 1 for over 30 years and using an Insulin pump with CGMS. I started taking Invokana just over a week ago. It has made a huge difference in leveling out my blood sugars, especially after meals and at night. My insulin needs are greatly reduced, and I welcome any reductions to basal rates and ratios, as they are easily changed. In fact, I am hoping to permanently reduce insulin usage so weight loss will occur. At times, I needed to suspend all insulin delivery during the first 15-30 minutes of workouts to avoid hyperglycemia. I am very excited by my results and hope it continues to be successful!
1 Like
Windy- did your doctor offer samples or did you have to request them?/Are you still doing well on Invokana? I'm interested in trying Invokana for reduction of insulin and high blood sugars (and some weight loss would be nice as well. ;P) but I'm still a little wary of the safety of the drug and I believe my endo is even more so with the addition of newer diabetes drugs.
Do you guys think that Invokana is not recommended for Type 1's simply for the increased hypoglycemic risk? I'm still reading up on SGLT-2 inhibitors, but those of you who are using Invokana, do you feel the means of how it removes glucose is safe? (For Type 1's)
for those posting having lows with Invokana...you just need to reduce your insulin A LOT! i got past that now being on Invokana for several months. A few other updates: I think the crazy good control has slipped over time now as some have posted. but still better than my 18yrs prior of T1 without this daily pill. also, a negative for me, is i've lost/loosing too much. i'm boney in some places. my ribs look as if im malnourished and starving. my wife comments on it. she is a nurse so i don't think she is trying to be vain but just telling me she has never seen me look like i look now. i guess for those with more weight to loose, this pill is a great side effect. but i'm 6ft, lean build, and weighed 170 with regular exercise. now i exercise less, try to do strength building since i weigh now 160 post 8 months on Invokana.
lastly, after the first few months, i got over the peeing all the time also. when i first got on it i went to having to wake up in the middle of night every night to urinate but that has now gone away for 4/7 nights roughly.
i'll update with A1C data next week after I see my endo.
I will also tell you lastly on the weight thing, i'm debating of stopping it to see if the weight comes back in places i want it (i.e. my rib cage and shoulders and hip bones)
Everyone: Thanks very much for the great posts. I had forgotten to ask my Endo about Invokana though plan on it next visit. My question to you all is besides the additional bathroom breaks and possible UTIs (that no one has experienced yet?), has anyone had any of the other side effects? The medication lists yeast infections (eeek!) and dehydration in particular. Anyone? So far most of the posts are positive and I would really like to switch a pill for a shot (Symlin is an injection). I have had great success with Symlin and my insulin requirements are already reduced by 60% so I can't really complain. I would just love to reduce the injections a bit. If Invokana is one pill a day, that is a huge difference from Symlin which for me is about 4 times a days. Thanks all...
Hi,
I just started taking this yesterday. On the 100 mg pill. So far yesterday and today i have seen the best BG's on my CGM since i can remember! i regularly have spikes into the high 200's and sometimes over 300 on a daily basis. Not over 200 for almost 48 hours! the only side effect i can report is that i'm extremely tired. just don't have a lot of energy. i'm drinking a ton of water, and haven't started the constant peeing yet. a little dizzy feeling. i'm hoping this all goes away as i get used to it. anyone else who's been on it remember starting off with this?
so far, i'm hopeful about how this will help me better manage my spikes. however, i would not recommend trying it as a T1 unless you are on a CGM and a pump. it is so important to constantly monitor to prevent lows and easily turn down the basal on a pump. i took a 90 minute spin class this morning; i gave myself half the amount of insulin i normally do for the protein bar i ate about 30 minutes prior, and turned my pump down about 40% for the entire 2 1/2 hour workout (took pilates class after). my BG didn't stayed between 85-110 the entire workout! loved it!
INVOKANA USERS:
I spoke to my Diabetes Educator about Invokana. She wanted me to ask you all how it is being prescribed and how is it covered by insurance, if at all? She wanted to do a little more research before suggesting it for anyone and wasn't sure about issues with cost.
Much appreciated!
I had spoken to my endo about this, exploring it as a potential therapy. Although for the most part I consider myself T2, my endo has increasingly given me confusing diagnoses so we had a conversation about the use of Invokana for T1. Invokana has been approved by the FDA as a treatment for T2, but not T1 (yet). Your doctor would write you a prescription and then would likely have to write a letter of medical necessity to justify the "off-label" prescription to make sure it is covered. It would be prudent to make sure you are "pre-authorized" before picking up any prescription. Since this is a new medication most endo's have a closet full of the stuff as drug reps try to get the new expensive medication sold. This means that you endo would probably have abundant suppliers to give you a month or two in free samples to try.
I recently checked and Invokana has just moved from a Tier 3 (non-preferred) to a Tier 2 (preferred). This means that under my insurance I can get Invokana for a $40 copay for a 90 day supply.
My endo mentioned me trying this but because I’m already too thin and have low blood pressure I’m not sure it would be a good idea. Anyone know if it’s geared more for lowering fasting glucose or post prandial glucose?
I just got back from CWD in Orlando and talked to a lot of type 1s on it. I want to try it and talking to my doc on Tuesday.
i've now been on it for 2 weeks. it has made a HUGE difference in my fasting bg's, my post meals and total insulin usage for the day. about a 25-30% reduction overall total insulin. but the big test will be when i get my A1C in September.
haven't lost any weight yet on it, which i was hoping would be another benefit. could use a nice 20 pound loss to take off what i've put on since being on insulin (misdiagnosed T2 for about 6 years; been T1 and on insulin for a little over 4 now.
one of the other problems that i had on this is a pretty nasty yeast infection - pretty common as you're peeing out a lot of sugars in your urine. that wasn't fun. but now take Azo Yeast on a regular basis that will hopefully help.
Dr. says it probably won't be covered on my insurance as a T1 since it's only approved for T2's. been on 100 mcg samples the last two weeks. he just gave me samples of 300 mcg that i'm going to try before getting an RX and paying out of pocket.
another thing i may have already mentioned is that i would not try Invokana as a T1 unless you are on a pump AND cgm because you have to be very, very careful that you don't have a low. you have to experiment by dialing down your pump on basal and boluses until you figure out what your body's new requirement is.
Hope all this helps!
I'm not on pump or cgm and like Invokana better than not being on it. i have now been taking it for almost 8 months or so and have had less lows.
now i will tell you of once incident where i was very low and didn't feel it. i tested my sugar at a normal time and found i was low. as i raced to carbs i started feeling it so it did finally come but i would say on this one incident out of last 8 months that this happened.
i have on invokana a lot less lows because i take a lot less insulin.
if you go on a paleo diet avoiding breads, rice, chips, cookies, etc. and stick to veggies, fruit, meat....i think your control becomes easier.
my biggest issues is i was not overweight much and especially thinner in face and arms to begin with....so this drug has made me thinner in areas i didn't want to thin out....almost like muscle mass loss....who knows..i'm sticking with it for now....if it truly helps and adds years to my kidneys/life/etc. then looking thinner is the sacrifice i'll take. and a little less sleep as i have to pee at 3am, ritually. ;-)
My boyfriend has just started taking Jardiance (a different SGLT 2 inhibitor), today. Thanks for everyone else who has posted, it is good to know what might happen. He is T1D, very good A1c, and skinny, but would like to have less highs and lows. He is already lowering his basal rate and wears a CGM. His doctor started him on half of a 10mg tablet to see if he would tolerate it. If anyone has any other advice, that would be great. Also, scrambler, are you still taking it? Have you continued to be too thin?
When you say trouble downtown lol did you mean yeast infections as well? If that's the case I would never consider it. I hate even taking antibiotics because of that issue.
Hi folks...no posts in a while and would love to see some current updates.
My Endo just prescribed Invokana and I started taking it on Monday (12/15/14). My blood sugars have been quite awesome and I've reduced the Humalog by another 4 units. I am getting pretty low in the mornings but I actually kind of like that because it helps figure out my morning needs (which at this point is 0 until lunch). I may look into reducing Levemir from 25u currently.
I've asked my pharmacy about the side effects and they mentioned from the people they have taking it there are no negative reports other than slight dehydration. For myself, I haven't noticed anything negative at all although I did decide to drink more water. Any others?
Hi,
I posted earlier about my boyfriend starting Jardiance. He has been taking it for a month and a half. He takes 1/4 of a 10mg tablet. So far, it's a really great addition. It definitely keeps him more stable and he really likes it. He's having less highs with the same number of lows. He drinks more water because of the possible side effects. He may have lost a little bit of weight, (didn't have any to lose) though that could be from our crazy schedule lately. Overall, it's been really positive. Currently, his insurance doesn't want to cover it, but he's working on getting documentation so they will!
Never heard of Jardiance nor ever seen anything about it. Sounds like it may be similar to Invokana? Invokana has been reclassified as a SGLT-2 and it looks like Jardiance is in the same class. Something to keep in mind though. Thanks!
I've been on the full dose for almost 6 months. I have had many fewer swings - haven't really had an actual low blood sugar in maybe a couple of months. I rarely hit 200 anymore and when I do, it tends to come down quickly without needing a correction. I do drink more water, but that's a good thing, no? No side effects other than really needing to find a toilet quickly when I get the urge. I also lost a few pounds unintentionally. My A1C only dropped from 6.2 to 6.1, but when you don't have any lows to decrease the number, I would say that's an OK thing. I also have decreased my basals and correction factors. Overall, I love it. Unless there is some hidden side effect not yet found, I'm on it for the long haul. For now I'll just go from one brand to another as I believe they all offer a year of free medication. Once those are up, I guess I'll have to start paying in full since there are no clinical trials for Type 1s yet.
Thanks for the update! What do you consider to be a full dose?
Whch brands would you switch between?
Good to hear about the lack of side effects!
Have you tried Victoza? Only one shot and it works great. I am a type 1 using it off label. My endo says they have stopped using Symlin in their practice because the Victoza is easier and only one shot. I used Symlin at one point and it was a lot of work....