Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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Health care providers may prescribe medications for other illnesses or indications (like type 2 diabetes medications) that might be helpful for a person’s concern or problem with T1D - commonly called 'off-label use'. Does your provider prescribe you any type 2 diabetes medications 'off-label'? Select all that apply. Cancel reply
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My endo provider prescribes a very small dose of Victoza (0.8u) daily to address stress eating, weight management and better post meal BG control. I have been on it for 6 years now.
Originally she prescribed Symlin but it caused too many unpredictable episodes of hypoglycemia even though it did help with satiety. She suggested Victoza and through trial and error, we adjusted the dose by titrating up slowly from one click of the pen (0.1 u) to 6 clicks (0.6 u) which is normally the recommended starting dose for most people, but was WAY TOO MUCH for me and caused nausea and GI issues when she first prescribed it and followed the recommended dosing titration schedule. It took 6 months of slow titration to reach the 0.6 dose and I remained on that for quite a while until we moved it up another click of the pen notch after a year and a half, and gradually up to a dose of 0.8u .
It really helps with satiety and tendencies to overeat. I was able to curb emotional stress eating habits and to gradually lose 20 lbs of stubborn excess weight. I am petite boned and 5’0″ tall. Using a GLP-1 has helped with me personally with overall BG control and lifestyle improvement.
Good for you, Connie! Btw, I used to be 5’7, but now I’m 5’4”!
Correction about titrating low dose of Victoza:
Each 10 clicks of pen = 0.6u (typical starting dose)
12 clicks = 0.8u (which is what I use)
20 clicks = 0.12u (typical mid-range dose)
30 clicks = 1.8u (typical full dose)
I have enough trouble keeping them from arbitrarily changing my diagnosis to Type 2 because I don’t look like a little kid. Getting my insulin prescriptions renewed is difficult enough.
“Not looking like a little kid” is why I like to remind HCP’s that 40% of new T1D Dx’s are adults and if a person is Dx’d with T1D as a child and gets access to the care, Rx’s and supplies they need, they get to grow up to be an adult with T1D.
#BigPharma at work it sounds like!! Doctors being paid to prescribe medicine NOT needed because they get a kickback when a patient sees a TV ad. There is only ONE medication for Type 1 Diabetes, Insulin. We are the only country on this planet that allows TV ads for prescriptions. It is why we pay so much for meds. We are paying for their advertising and they get a 100% write off for the cost. $$$ instead of healthcare.
@Larry – doctors absolutely 100% do NOT receive kickbacks. Look up “The Sunshine Act”. Every financial gain your physician earns from a pharmaceutical company is reported, and made public information. Right down to the pens and the little finger stick thingies Eli Lilly leaves behind.
PAYERS receive a rebate based on the number of their patients who fill a prescription. The value of the rebate varies by plan and by drug (and, therefore, by manufacturer). While there is a lot of money changing hands, it is NOT getting to the doctors.
There are legitimate reasons for a doctor to prescribe a medication off-label if they think its mechanism of action could benefit their patient. A lot of T1Ds also struggle with insulin resistance and might benefit from T2D meds that specifically addresses that. There are some good examples on the comments here.
There are federal and state laws in place to avoid physician conflicts of interest. Nothing is full proof, but the risk of million dollar lawsuits and felony charges are pretty effective disincentives. I like to believe most MDs are decent folks.
Agree that the TV ads are disturbing. “Ask your doctor if ‘medication x’ is right for you!”. Sometimes the commercial doesn’t even mention what condition the medication is for. I often wonder who’s going to their doctor to ask “I saw an ad about a medication that may cause death but the people looked very happy. Can I try it?”
Sometimes PWDs with T1 need other hormone replacement medications besides just insulin to enhance better outcomes. Everyone’s body mechanics and metabolism is slightly different and unique. A lot is influenced by environment & culture, habitual patterns and life style choices.
Lisinopril
Me too
this is a drug for blood pressure. I would assume this is not being prescribed “off-label.”
They actually told me to take lisinopril to protect my kidneys, even though, at the time, my blood pressure was fine. Same with a statin to protect my heart, even though my cholesterol is fine.
I was on Trulicity which really helped tame my appetite. I was using a lot less insulin but, then, my new insurance wouldn’t cover it. So I’ve had to stop using it.
Yes Farxiga
Used metformin for awhile but stopped after having chest discomfort- a rare side effect.
My answer probably should be just no, but for many years I’ve been prescribed a cholesterol lowering drug although I have never ever had normal, let alone high, cholesterol, it has always been below ‘normal.’
I probably wouldn’t take it even if he prescribed it. I only take humalog. I prefer homeopathic medicine but don’t like the lack of knowledge that doctors have about it. For example, I know turmeric works for my joint pain because when I take it, pain goes away and when I don’t it returns. However, friends doctor told her it increases your blood pressure. I backed off how much I take. Her doctor said take magnesium citrate. A side affect helps you sleep and I now sleep through the night where before, I would wake up. But I worry about what it will do long term. And my doctor did suggest red yeast rice or red rice yeast (can’t remember how the words go) for my slightly elevated cholesterol instead of a statin which is real progress. That worked for my dad. But my husband says it can damage your liver. My doctor said nope, your liver is fine try it. Now that’s progress.
WOW!!!!
I was dx’d Type 1 in 1976. I was letting my PCP handle my diabetes after retiring permanently to Florida in 2005. I had been experiencing more frequent hypoglycemic episodes with increasing A1c’s (from low 6’s into the low 7’s.) My PCP’s approach was initially to prescribe Avandia (generic name: rosiglitazone) since he suspected that I had developed insulin resistance. After 2 weeks on Avandia (along with my MDI of Lantus and NovoLog) and having experienced 2 severe hypos when I lost consciousness, I advised him I would not take the Avandia. (I had misgivings about taking it to begin with.) He then told me to increase my Lantus and eliminate my meal-time NovoLog. (????? This is when I seriously doubted he knew what he was doing.) This was in 2010. Shortly afterward, my husband and I left for vacation in Idaho. During our first night in Pocatello Idaho, I again suffered a sever hypoglycemic episode. My husband injected me with glucagon and drove me to the hospital (I had become ambulatory but not very coherent.) I was admitted to the hospital for multiple tests and scans because they feared I’d suffered a stroke. I was discharged the next day after multiple tests revealed nothing but hypoglycemia. We cancelled our vacation and returned to Florida where I sought an appointment with my PCP. When he advised me to continue with what he had previously recommended (increased Lantus dosage and elimination of NovoLog), I realized following his advice would kill me. I self-referred to an endocrinologist in Tampa (about 80 minutes drive away from where I live). That endo immediately reduced my Lantus dosage by 25% and re-educated me about carb to insulin ratios for meal-time insulin. I had resisted using an insulin pump when I had previously been under an endo’s care up north but, within 6 months of seeing this new endo, I began using my first insulin pump. (Sorry now I’d waited so long.) I learned to trust my gut about doctors and realized that my former PCP was either too arrogant or ignorant to realize treating my diabetes was beyond his skill set. I was lucky to survive his “care”. (He is still practicing in my community.)
Wow, I’m glad your story had a happy ending! The medical incompetence of a few MD’s when trying to manage Type 1 diabetic patients is scary.
I had a similar experience with an endo who negligently recommended an extremely high dose of Lantau, which I’d never used before. It sent me into an unconscious low. I never went back to him, nor did I try Lantus again. He too is still practicing and I can’t imagine how.
I am currently not taking any medications “off label.” (I answered “No”.) However, my doctor has discussed the possibility of doing this. He mentioned success doing this with other patients.
No, my A1C’s have been good for many years now and this subject has never once been discussed with me. The list of “Adverse Reactions” that comes with so many medications and many of them being severe I’d never take any of the medications listed in this question.
I’ve thought about talking to my endo about something to help with weight loss but I haven’t. I have been able to lose 70 pounds over the last 13 months by watching my calories and while I still have a way to go I think I can do it without extra medications that my insurance won’t cover anyway. Even though I am overweight (still obese actually) I don’t have insulin resistance so reducing the amount I take isn’t something I need to do. Currently use around 24 units a day in my pump, eating an average of 150g of carbs daily.
I take Wegovy which is the same as ozempic. I’ve maintained an 80 pound weight loss now for 4 years. I also took Saxenda. It works!
I might add that my endocrinologist prescribed it for me. My insurance covers it as Wegovy, but not Ozempic. Hint hint 😁
Many years ago a T2 dx was added to my life long T1 dx. I was prescribed a med given to T2s. It did stabilize my bgs. Then it was taken off the market by the FDA.
Yes, due insulin resistance and weight gain, my endo put me on Acadbose, Metformin, and Slgt-2 Jardiance. It cut my daily insulin usage by 25% and my weight came back to my normal and has held steady.
No, I don’t take any type 2, off-label medications.
Once, I saw an Endocrinologist for the first time. After he told me he deals with thyroid patients, and doesn’t know much about diabetes, he wanted me to start taking Lipitor as a preventive medication. I told him no thank you. My lipids have always been excellent, I exercise regularly (aerobic), have very good blood pressure reading, and maintain my weight very well.
My doctor gave me Farxiga to level out post meal BG. It helped a lot but insurance wouldn’t approve it and can’t use pay card if you have Medicare so I can’t afford it. It’s not right.
I did ask once about a Type 2 medication to help with kidney deterioration, but my doctor dismissed it, saying it was for Type 2. That left me thinking it couldn’t be done, but plan to check into it further.
GLP1 for weight control. Works fantastic. I’ve maintained an 80 lb weight loss using it in the last 4 years. Still on it and doing great.
*high five!
That’s fantastic, Tina! 🙂
I was prescribed Metformin, I’ve been taking it for about a year to get my PCOS under control and high testosterone down, which after a few dosage increases it finally did. I also take significantly less insulin, I was taking 45 units of LANTUS every day, now I’m at 20, and insulin resistance is gone.
My Endo prescribed Ozempic but I had too much intestinal distress and only moderate insulin changes and no weight loss in 2 months so I discontinued it.
Also, I asked for and received an Rx of U-200 Humalog that I use in my pump in place of reg Novolog/Humalog U-100 because I’m highly insulin resistant.
I take trulicity and actos. My glucose would not be under control without it.
“No”, however I took Victoza (GLP-1″ for several years for insulin resistance.
As we all have learned, let them try on somebody else first. (A lot of somebody’s first)