After a little more than ten years with Type 1 diabetes, I’ve found that I am one of those people whose blood sugar spikes fast and hard after eating, and then plummets. Because of this, several years ago I began to use Symlin, an injectable drug that slows the rate at which the stomach empties food into the small intestine, which can prevent blood glucose spikes after meals. While I loved that Symlin helped with my post prandial spikes, I found it difficult to use. I got through the initial side effects, which included several weeks of nausea, but had difficulty with the rigidity and routine Symlin required, and the nasty lows that sometimes came with the therapy. I decided that I couldn’t devote the time to managing it, so I stopped using it several months later.
As a part of my job I attend most of the big diabetes conferences each year. (For those of you who don’t know me, I run the College Diabetes Network, a national nonprofit organization which supports young adults with diabetes.) Although I devote my life to improving the lives of people with diabetes, like all busy people, my own diabetes often takes a back seat to everything else going on. Still, one of the perks that comes with attending diabetes conferences is getting to learn about the newest therapies coming to market. Over the past few years I have been hearing more and more about therapies used for Type 2 diabetes that can also benefit Type 1 diabetics, such as SGLT2s, particularly Invokana and GLP1s (ie. Victoza, Bydureon). Interestingly, for the most part, I wasn’t hearing about these therapies related to Type 1 diabetes from researchers or pharmaceutical companies, but from colleagues with Type 1 diabetes (who also happen to be some of the leading experts in the diabetes field, many of whom were testing these ‘Type 2’ therapies themselves off label). Of course, I had to hear more.
After talking with my friends at length and doing more research on how the drugs actually work, I was more than game to give them a try. Given that Invokana is a pill, as opposed to Victoza which is an injection, I decided to start there. (Currently, there are several other options available in both the SGLT2 and GLP1 categories, however, at the time I was exploring my options the ones I have mentioned here were the only ones available.) According to the official Invokana website, “INVOKANA works with your kidneys to help you lose some sugar through the process of urination.” Dr. Zachary Bloomgarden, clinical professor at Mt. Sinai College of Medicine explains that Invokana, which has been in development for the last 13 years, employs a “novel mechanism of action” to lower blood sugar. It works by inhibiting sodium glucose co-transporter2, a carrier that aids in the reabsorption of glucose into the bloodstream through the kidneys, which occurs during the process in which blood is filtered through the kidneys. The excess glucose is then flushed out of the body, which is why Invokana also acts as a “potent diuretic,” says Bloomgarden. I had heard anecdotally that possible Invokana side effects might include excessive urination, yeast infections, dehydration, and low blood sugar. Some friends taking it also shared that they soon went off of it because the need to urinate so frequently was disruptive to their lives, and one even mentioned muscle soreness as a side effect.
Despite the potential side effects, I decided to give Invokana a try. I immediately made an appointment with my endo, and me being me, I emailed her ahead of time to give her a heads up that I wanted to discuss going on Invokana. Unfortunately, she wasn’t familiar with use of Invokana in Type 1 diabetes, or how insulin should be adjusted when on it. I sent her all of the research articles I could find related to Type 2 therapies being explored for Type 1. Luckily for me, and much to her credit, she was willing to prescribe it to me off label to give it a try.
Thanks to some unofficial discussions with a friend who has Type 1 diabetes and is also an endocrinologist, I decided to decrease all of my basal rates by 20% (I am on a pump), and adjusted my carb ratios by one across the board (i.e. from 1:9 to 1:10). I decided not to adjust my sensitivity factor at the time. I wore my CGM as I got started, and made slight adjustments over the course of the first week. I saw the effect of Invokana the first day I took it. It decreased my insulin needs, so I was glad that I had cut my basal rate by 20% right from the start. I found that my post prandial spikes weren’t as severe, and I wasn’t seeing the violent swings that I normally did. My experience has been that Invokana acts as a “buffer” helping to moderate my blood sugar variability. It is definitely not a complete fix though, and I still experience highs and lows, just not to the degree that I did before. Luckily, I wasn’t running to the bathroom as often as I’d been warned I might be, and after about four months on Invokana I have lost around 15 pounds. Also, I take probiotic, an over the counter dietary supplement, to introduce more good bacteria into my body. This can help prevent yeast infections. I also keep a stash of Diflucan/Flucanozole, a prescription medication which treats yeast infections in about two days on hand.
Despite experiencing a few of the side effects described above, I love using Invokana and plan to continue using it for the foreseeable future. Lastly, something to keep in mind: When my doctor prescribed Invokana at my visit, she happened to have a coupon for it that a local rep had given her. Thanks to that coupon, I am able to have my copays covered for a year. So make sure to ask your doctor about this if you decide to take Invokana. I am slightly worried that after this first year is up, my copay will then end up being $100 per month, just for the Invokana. And while I would like to believe the companies producing SGLT2 drugs will move into the Type 1 market and push through FDA quickly, I’m not holding my breath. So, in the meantime, I’m putting money aside to create my own “Invokana Fund.”
Disclaimer: This article is entirely based on my personal experience as a person with Type 1 diabetes. I am not a medical professional. If you are interested in these therapies, talk to your doctor. I do not endorse Invokana, or receive any compensation from its maker.
You can find more information on nontraditional therapies being explored for use in Type 1 diabetes through the following links:
Type 2 Diabetes Treatments May Benefit People with Type 1 Diabetes
What Invokana’s Day At The Fda Means For The Future Of Sglt-2s
- European Association For The Study Of Diabetes 2013: Type 2 Therapies For Type 1 Diabetes?
- Fda Advisory Committee Member Dr. Sanjay Kaul Reveals What Lies Ahead For Invokana And Sglt-2 Inhibitors
I was put on Invokana in January 2015, after 6 months of use, I developed a horrible case of Ketones and Metabolic Acidosis. I should have been dead according to my readings. My diabetes was getting under control and doing great until suddenly my kidneys started to shut down. They have since then put a warning label on Invokana to not take it if you’re a type 1 diabetic. I understand that this may not have the same effect on everyone but I thought it would be important to mention that it literally almost killed me.
If you are on facebook my favorite invokana group is Women on Invokana Support Group. It has a mix of t1d, t2d, and different ages. I think women have other factors related to changes in hormones that put a whole other spin on managing t1d. It is a nice group of ladies and a comfortable place to ask questions and get good input from others. Also they are a fun supportive group.
Georgina, I have only lost 3-4 lbs and have been on invo since september. I belong to a few different facebook invo groups and it seems that the type 1’s don’t lose the weight like the type 2’s. I think maybe it is because we always have the insulin working against us. I am going to try going more low carb to see if I can reduce my insulin intake. The invo has helped the insulin that I do take actually work, before invo I was tossing all kinds of insulin to cover food and for corrections and it was… Read more »
I have been taking invokkana for about 45 days. After a long vacation I came back to my endocrinologist to find that my a1c was perfect 6.7 but I had gained 5 more pounds. She said I am the only patient she has ever seen to gain weight on this drug. I am so conflicted. I have fought almost my entire life to get an acceptable a1c reading and finally invoccana has made that possible. However, I have gained even more weight. Any thoughts you have or suggestions would be greatly appreciated. I have had type 1 since I was… Read more »
Piscesyin, That is great! This med i believe has been a lifesaver for me! I think that when type 1 diabetics get into the 40’s we struggle with resistance and women with changing hormones. I have seen a few articles about type 1’s becoming type 1/type 2’s as we age. As with any new med I understand we might find it causes serious side effects in a few years, but at this point invo has been the only thing that has helped me. My doctor is so happy and loves this med, he said I was literally decomposing prior to… Read more »
Hiya…started Invokana in early December 2014. Been type 1 40 years and ran into insulin resistance (also tested positive for antibodies). Had a huge problem with resistance until trying Symlin which worked for a while then started to not be so effective. Doctor decided to start me on Invokana and it has been STELLAR. Blood sugars are perfect, basal dropped to under 8u a day and zero side effects. I did increase my water intake although I corrected that by using a sugar free elecrolyte that I throw in a bottle of water. The only urination increase may be at… Read more »
I was on 100 mg for 3 months, recently went to full dose of 300mg. It has made a big difference in my overall health. Reduce my AiC from 7.9 to 7.2 in 6 weeks when first started on the 100mg. I am waiting on the results of my latest A1C. Yes it is taken once a day.
Did you start with 100 or 300 mg one time a day?
Metformin does not have serious side effects. Yes, very few people will develop lactic acidosis–only people who take it who also have late stage renal impairment. In fact, metformin is about as safe a drug as drugs come. It has been on the market for decades. Just remember the FDA concern when approving Invokana–bladder cancer. The bladder’s cells care sensitive and were not designed to be dealing with urine concentrated with glucose. FDA was so concerned that it required long term follow up studies on this matter. In addition, bladder cancer was present in the short term studies done to… Read more »
Dan I have tried metformin, it did nothing for me but make me feel tired and very sore muscles. Invokana has been phenomenal for me. I have never had such tight control. Currently about 3 studies for type 1’s on invo are running so that someday it may be another option for type 1’s. The side effects are much like running high blood sugars, which is what I was dealing with prior to invokana. It has allowed me to cut about 20 units of insulin daily and have stable blood sugars for hours and hours with no dangerous lows. I… Read more »