Type 1 and new drug Jardiance

But are you having more low blood sugars to achieve that lower A1C on Jardiance? I’m starting trials next month and my main concern is maybe too much low blood sugars on Jardiance because there could be a situation where your kidneys urinate blood sugar while you still have a few hours of mealtime insulin still in your system which has not fsctored in the kidneys assistance in lowering blood sugars. This is all theory from me, but possibly there won’t be more low blood sugars due to lowering your dosage of insulin overall. Is that what you’re finding? Is your amount of lower blood sugars on par with before you started taking Jardiance?

My lows have not increased. The main reason my A1C dropped is my post-meal spikes arent nearly as severe as they were before.

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I too am a T1 taking Jardiance. I have reduced my TDD by about 35% and my A1c is down by 0.3. I suspect that it will lower even more because like @DanP my post meal spikes are significantly reduced as well.

Sarah :four_leaf_clover:

Brian BSC gave an excellent summary. Invokanna was the first in this class of drugs to be approved. It is being tested in T1 now. I have been on it for almost 2 years now, and for me it has been a real game changer. My bg are much better, A1c went from 7.6 to 6.4. BG over 200 are now rare, and it takes less insulin to pull down my bg. Yes, you have to be careful not to dehydrate, but that was also an issue before if you tended to run high. My post exercise bg have also been much better. I feel like I am in much better control than I ever was.

Mike R
DXD 1964
Pumper 1994

I can’t believe how good it is working. Just 6 weeks on 10mg and great results so far. One of the most significant improvements that I’ve ever experienced. I have a continuous glucose sensor and I can see the difference the first day I started on Jardiance.

Reviving an old thread. My doc just asked me to try this - specifically for weight loss, as my blood sugar control is quite good. I am desperate to lose weight and nothing, even not eating, is working satisfactorily. I have a 1 month trial at 25 mcg.

My doc says he knows many people who are non diabetic and using it off-label for weight loss. He also said need to be vigilent for side effects add it can worsen autoimmune conditions. He knows a Dr who’s myasthenia Gravis was exacerbated by this drug; a documented side effect.

How is it that insurance is paying for this if it is prescribed off label? My endo mentioned it but I thought it wasn’t an option due to its off label usage.

FWIW, there’s a discount card where you can pay 0 Co-Pay if you’re eligible. https://www.jardiance.com/savings-card

On the other hand the FDA just issued a warning this past week about Invokana, a drug in the same class (SGL2-Inhibitor), possibly being related to an increased risk in amputations due to the the risk of dehydration from how these sorts of medications work. FDA Warns About Amputation Risk With Canagliflozin Right now it’s under review and they aren’t sure. Be sure to drink your fluids as directed.

First dose last night (day 1), and though my blood sugars are excellent / much better than usual today, it seems to have a lot of side effects that are quite unpleasant, and remains to see if they settle down and are tolerable enough to continue this trial.

However, blood sugar today has been 85 (Fasting), 92 (@ 9:30 - 3 hours after very low carb breakfast), 82 (12 noon - no food since breakfast), 74 (2:30 - no food since breakfast).

Currently I am not eating much (on purpose, and maximum of 2 meals a day), in order to try to get weight loss happening.

Maybe this will ‘spill just enough sugar’ to keep my blood sugar good without insulin, when used in combination with vlc diet, and Intermittent Fasting. And maybe just maybe I will then be able to lose weight. Of course there is no literature on using it like this with relatively low hba1c (my latest is 5.5.), and the drug info sheets study groups had average baseline hba1c of about 7.8 (says heaps about efficacy of typical diabetes management). However, my Dr says he knows a lot of people - drs and medical field people - who are non-diabetic who are currently successfully using it off-label for weight loss. He described it as the orlistat (the drug that stops absorption of fat) of the kidneys.

The picture may be different if I eat more. And I suspect it will not spill enough sugar to allow me to eat much carbs though…

Remains to be seen if I can tolerate the side effects… and I do seem to be prone to UTI, so that will also be a factor to be considered…

To choose between this and Tresiba, if I had to choose, I will take Tresiba any day. With Tresiba I can almost forget I have diabetes (if I eat VLC and IF). My Dr kindly gave me 2 more sample vials of Tresiba, which I shall reserve for later use…

Hi Christina,

I live in the Philippines, though I’m Australian, where next to no one has medical insurance. So all meds are simply purchased directly from the pharmacy, which is what I do. Sometimes my Dr gives me free samples as well.

1 piece of 25 mg tablet of Jardiance costs P66 = USD1.40 (approx.)

1 pen of Tresiba costs about USD29.
1 pen of levemir costs about USD20.
1 bottle of 100 pieces of 100 mcg thyroxine table costs about USD24

However, I am diabetic (and usually use insulin), so this is not off-label for me. My dr did say if sugars are not “high” it will not work. However, I am seeing that it seems to prevent sugars from going high… early days of the trial though.

He said, from his perspective, the major disadvantage of using it off-label is that one then cannot report any side effects… and of course, all the monitoring on kidney, liver, regular urinalysis, etc, should still be done.

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Your doctor is mistaken. My A1c was already in the 5s when I started an SGLT2 and it clearly worked and it dropped my insulin requirements and made my fasting blood sugars easier to control. I clearly was dumping glucose in my urine as measured by the diastix. If you look at the graph I posted above, you dump glucose even at normal blood sugars.

And in the US you can report side effects even if it is prescribed off-label. You should report all adverse events through MedWatch and you can report either as a health care professional or as a consumer.

Hi Brian i guess, that’s why we’re trying it. Still need to. Take insulin though. I haven’t for 36 hours now and wondering why i feel wierd… blood sugar is perfect, but the measured is extracellular… intracellular may be low without adequate insulin.

I should have been smarter.

Just texted my Dr, he said no worries if my bs is on target, and i can not take insulin and just observe… i guess he’s still assuming type 2… i hope he’s right.

Personally I would not just “stop” insulin thinking that the just being on Jardiance you would be just fine. If you are actually type 1 and still producing some insulin you may well be fine for quite some time. But your insulin production could wax and wane. And if your insulin production just stops for a time you could have real problems, endangering your health. I would suggest it is actually safer to remain on at least a low dose of basal insulin. It wouldn’t necessarily cause hypos as your body will lower natural insulin production as you offset circulating insulin levels with external insulin. I would recommend talking to your doctor about this.

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Thanks Brian

He said stop insulin and observe. Given my interpretation of the evidence and history, despite incomplete diagnosis, i still consider i an most likely lada. But i agree with, and think I’ll follow your thoughts and continue reduced basal, and bolus corrections. I felt like low all day… clammy uncomfortable feeling, abdominal pain, even though bs perfect, and actually low this evening… before i stated stress eating.

Haha. Overcompensated… hit 150 and rising (and feeling really hot which is better than clammy) which is high for the evening for me. Feeling much better and now i can do a correction and get some basal on board. Oh gosh, i am psychologically dependent for sure…

A bit stressful trying something new.

So maybe I should do some more testing? Skip taking insulin for 48 hours, and then test fasting insulin (along with urinalysis to check for presence of glucose and ketones). Glucose will be positive given the drug, but all the rest should be normal… I am a bit reluctant to do further antibody testing due to the cost, which would be out of pocket.

This is probably a good case / reason to test for type of diabetes, to direct the treatment as with this medication type is possibly important, as insulin is absolutely needed for health, and the mechanism for lowering blood sugar completely bypasses insulin. ie. ketoacidosis is still possible, even with normal blood sugars. I would think this would be a problem for wrongly diagnosed type 1s who are put on this medication.

I haven’t had testing for type of diabetes though I am now 8 years in. My (ex)endo always said it was gestational - but I’m already 4 years post partum of my second diabetic pregnancy… my current GP just assumes type 2, which I have challenged him on - but we haven’t investigated further (up until now I have been following Bernstein’s philosophy that if the treatment works, then no need to know the type).

Diabetes development was concurrent with first pregnancy, but never went away after. Did test fasting insulin way back years ago (low normal), c-peptide (also low normal), GAD (negative, but there are other antibodies). Do not see any benefit or impact on BS from metformin (presumably not insulin resistant). Do have hypothyroid, allergies, asthma as well as diabetes (maybe autoimmune-related). I am obese - though I wasn’t at the time of first diagnosis (I was normal weight, very fit and active and only a few months post-ironman triathlon)., I do get very good control with low carb, IF, and insulin up to now.

I think it is our job to protect ourselves from doctors at times. Doctors make broad assumptions such as almost all PWD have type 2 so any particular patient must be type 2. And then to suggest you “stop” insulin based on that assumption endangers us. Unless your doctor actually does the tests to disprove other diagnoses I think you should be careful, that is all I’m saying.

Thanks Brian, i appreciate your input. It is kind of what i thought, but it really helps to have someone else saying the same thing.

I am not following his advice. I took insulin again last night and this morning (Just reduced dose slightly while i see impacts of drug). Feeling much better today. Still eating low carb and won’t change any other aspect of my normal management.

But i am going to push for a clearer diagnosis.

Im a T1 taking Jardiance for the last 9 months or so. For me, I got no weight loss or insulin reduction, but it has leveled out my BG’s and virtually eliminated post meal spikes.

Aside from Brian’s advice on insulin above, Id like to add it is EXTREMELY important for you to regularly test for ketones. Ketones are, of course, a likely side effect of such drugs, and it IS possible to go into DKA with normal BG’s. In my experience, if I dont consume a fair amount of carbs (60-100g/day)(thus, taking boluses for it which also keep ketones down) spread throughout the day, I will rise to moderate or even high ketones. Personally, the tradeoff of any weight loss or better BG numbers arent worth the heart risk because of higher ketones. Ketones are TERRIBLE for your heart. Thats what the lawsuits vs Invokana is about.

Just be careful.

Do you have more information on this? I’ve not seen this. Things I have read suggest that the heart is actually very happy burning ketones and that ketones themselves are not harmful. Do you have a reference?

Brian-

Its important to differentiate DKA with ketosis. In a non-diabetic body, ketosis is a natural side effect of the depletion of glucose int he liver. In diabetics, its my understanding we dont get that benefit, and cant effectively get into that magical ketosis state that non-diabetics enjoy.The Ph levels of a diabetic’s ketones are different in that the resulting ketones are dangerous for the heart and are considered DKA.

Here’s one article that explains it: diabetes.org.in