Januvia and type 1

[Jantype1]

I'm feeling a little anxious about my medication. I'm on slow acting insuline of about 10 units a day - it fluctuates every 3/4 weeks as I'm in the honeymoon period. I cannot tolerate metformin or trulicity due to intense digestive problems, so my diabetes specialist has given me Januvia. I've been taking it for six weeks now and my readings are down to the point where I'm having hypos if I go more than three hours without food. I've been reducing my insulin and I'm down to 7 units - when I began Januvia I was at 12. I'm pleased with the progress but I'm also worried as I keep reading articles that state quite clearly that Januvia should not be given to type 1 as it can interfere with pancreatic funtion. I'd be really interested in hearing if there are more type 1 taking Januvia out there. Thank you

 

[Lamont D]

I'm feeling a little anxious about my medication. I'm on slow acting insuline of about 10 units a day - it fluctuates every 3/4 weeks as I'm in the honeymoon period. I cannot tolerate metformin or trulicity due to intense digestive problems, so my diabetes specialist has given me Januvia. I've been taking it for six weeks now and my readings are down to the point where I'm having hypos if I go more than three hours without food. I've been reducing my insulin and I'm down to 7 units - when I began Januvia I was at 12. I'm pleased with the progress but I'm also worried as I keep reading articles that state quite clearly that Januvia should not be given to type 1 as it can interfere with pancreatic funtion. I'd be really interested in hearing if there are more type 1 taking Januvia out there. Thank you

Hi, I'm not type 1 but I was on januvia (sitagliptin) for over eight years because I have a very weak first phase insulin response. It increases the insulin when eating.
This is how over time, because it reduces the spike, lowers hba1c levels.
How this works for you, I have no idea!

 

[Antje77]

Hi @Jantype1 , is your specialist an endocrinologist?
Do you know why you've been prescribed metformin and trulicity, and now januvia if you have a type 1 diagnosis?
Those are usually T2 medications, although they can sometimesbe prescribed in T1 to help with insulin resistance.

However, the main treatment of T1 is insulin, because T1 means having an insulin deficiency.
Is there any reason why you're not being treated with insulin only?

 

[Jantype1]

Hi, I'm not type 1 but I was on januvia (sitagliptin) for over eight years because I have a very weak first phase insulin response. It increases the insulin when eating.
This is how over time, because it reduces the spike, lowers hba1c levels.
How this works for you, I have no idea!

Thanks for your input - yes it has certainly lowered the spike which is great as I was getting very high highs. No change in hba1c so far but it's early days yet.

 

[EllieM]

Hi @Jantype1 and welcome to the forums.

Here's the NHS link on it and I agree it says it isn't for T1s.

Who can and cannot take sitagliptin

NHS medicines information on who can take sitagliptin and who may not be able to take it.

www.nhs.uk

My understanding is that it both increases insulin production and decreases production of sugar by the liver (like metformin) so it's possible that they are just using it because you can't tolerate metformin??? (Wild guess, I am not a doctor).

If you are still in the honeymoon period then the insulin stimulating effect might still be having some use, I suppose? Maybe (another wild guess not based on experience or medical knowledge) it will keep you off short acting insulin for a bit longer?

But honestly, I think your question would be a really good one for your specialist.

 

[Antje77]

Thanks for your input - yes it has certainly lowered the spike which is great as I was getting very high highs. No change in hba1c so far but it's early days yet.

In T1, those spikes are usually dealt with with quick acting insulin taken before meals.

 

[Jantype1]

Hi @Jantype1 , is your specialist an endocrinologist?
Do you know why you've been prescribed metformin and trulicity, and now januvia if you have a type 1 diagnosis?
Those are usually T2 medications, although they can sometimesbe prescribed in T1 to help with insulin resistance.

However, the main treatment of T1 is insulin, because T1 means having an insulin deficiency.
Is there any reason why you're not being treated with insulin only?

Thank you for taking the time to reply. The doctor is an endocrinoligist in a local hospital which has a diabetes day clinic. I was initially given metformin and trulicty as it was presumed that because of my age, 67, and being overweight that I was type 2. But something wasn't quite right as I had neer shown the slightest sign of diabetes in my regular blood checks, and I have a healthy lifestyle...a blood test showed I am type 1 but it took about six weeks for the results to come back and for four weeks I was taking metformin/trulicty combo to bring down my readings which were very high. hba1c was 11.
I was prescribed Januvia at my last check up because of sugar spikes immediately after eating around 19/20 mmol/L despite being on a low carb diet.

 

[Jantype1]

In T1, those spikes are usually dealt with with quick acting insulin taken before meals.

Yes that's what I was expecting/dreading

 

[Jantype1]

Hi @Jantype1 and welcome to the forums.

Here's the NHS link on it and I agree it says it isn't for T1s.

Who can and cannot take sitagliptin

NHS medicines information on who can take sitagliptin and who may not be able to take it.

www.nhs.uk

My understanding is that it both increases insulin production and decreases production of sugar by the liver (like metformin) so it's possible that they are just using it because you can't tolerate metformin??? (Wild guess, I am not a doctor).

If you are still in the honeymoon period then the insulin stimulating effect might still be having some use, I suppose? Maybe (another wild guess not based on experience or medical knowledge) it will keep you off short acting insulin for a bit longer?

But honestly, I think your question would be a really good one for your specialist.

Thanks I'm certainly going to contact her tomorrow for my own peace of mind.

 

[Antje77]

.a blood test showed I am type 1 but it took about six weeks for the results to come back and for four weeks I was taking metformin/trulicty combo to bring down my readings which were very high. hba1c was 11.
I was prescribed Januvia at my last check up because of sugar spikes immediately after eating around 19/20 mmol/L

It makes perfect sense to me you were prescribed those medications initially, before your results were back.
It doesn't make as much sense to me that you haven't been prescribed a bolus insulin to go with your basal after your results showed T1.

Yes that's what I was expecting/dreading

Please don't dread being started on the right medication!
It takes some getting used to, and a steep learning curve to find the right doses, but you may well find you'll feel much better with a tool to prevent those high spikes.

 

[Finnlee]

I was prescribed Januvia (sitagliptin) from my T1 diagnosis, along with basal and bolus insulins.

I never knew if the Januvia made a difference until one day I accidentally took two Januvia (instead of one Januvia and one Vitamin D tablet) and spent the whole morning low.

I had another C-Peptid test recently (two years after diagnosis) and it came back much lower than on diagnosis, so I've been told to stop taking Januvia. The C-Peptid reference range is 1.1-4.4 ng/ml. In August 2021 (on diagnosis) I was 0.4 ng/ml and in October 2023 I was 0.16 ng/ml.

I don't notice a big difference in my insulin requirements since stopping it, so I think as my self-made insulin was in a slow decline, I was getting less and less benefit from the Januvia.

I didn't have any adverse affects to Januvia or the generic sitagliptin meds that became available in the time since I was diagnosed, so I didn't try any other meds (beside basal and bolus insulins from the start). I'm in Germany so the prescription standards for newly diagnosed adult T1Ds might be different than in the UK.

Also, I agree with @Antje77 that having all the tools to manage your diabetes is key. For T1Ds, that means both a basal and a bolus insulin. Your endo asking you to manage with only a basal insulin isn't fair to you, in my opinion. Yes, it takes a while to get used to injecting before every meal and there is a steep learning curve, but using both a basal and a bolus insulin gives you a better chance at managing your blood sugar.

 

[Deleted member 527103]

Yes that's what I was expecting/dreading

There is absolutely nothing to.dread when it comes to getting the right treatment for your condition.
Fast acting insulin gives you flexibility to eat what you want when you want it.
It has kept me alive, driving, working, travelling, eating, exercising, partying, ... for 20 years.

 

[Jantype1]

I was prescribed Januvia (sitagliptin) from my T1 diagnosis, along with basal and bolus insulins.

I never knew if the Januvia made a difference until one day I accidentally took two Januvia (instead of one Januvia and one Vitamin D tablet) and spent the whole morning low.

I had another C-Peptid test recently (two years after diagnosis) and it came back much lower than on diagnosis, so I've been told to stop taking Januvia. The C-Peptid reference range is 1.1-4.4 ng/ml. In August 2021 (on diagnosis) I was 0.4 ng/ml and in October 2023 I was 0.16 ng/ml.

I don't notice a big difference in my insulin requirements since stopping it, so I think as my self-made insulin was in a slow decline, I was getting less and less benefit from the Januvia.

I didn't have any adverse affects to Januvia or the generic sitagliptin meds that became available in the time since I was diagnosed, so I didn't try any other meds (beside basal and bolus insulins from the start). I'm in Germany so the prescription standards for newly diagnosed adult T1Ds might be different than in the UK.

Also, I agree with @Antje77 that having all the tools to manage your diabetes is key. For T1Ds, that means both a basal and a bolus insulin. Your endo asking you to manage with only a basal insulin isn't fair to you, in my opinion. Yes, it takes a while to get used to injecting before every meal and there is a steep learning curve, but using both a basal and a bolus insulin gives you a better chance at managing your blood sugar.

Thank you so much. I see that you are in Germany - I'm in France and I think in these European countries the protocols concerning medication are different. I am reassured.
Thanks for confirming too that Januvia lowered your sugar readings. I spend the late mornings and late afternoons battling the hypos which affects sport (I play tennis) and even just going for a walk. When the doc gave it to me she said it wouldn't cause hypos because it is supposed to adapt according to the amount of sugar in your blood at any given time. But of course this is not instantaneous and my hypos tend to come on very quickly once I get below a certain level about 4.5mmol
I haven't really had any side effects apart from a slight headache at first so I tolerate it pretty well and it has lowered my blood sugar so far.
I really don't know why I'm not on bolus - perhaps Januvia is the last resort before I become a full blown type 1 although I have been told that my anitbodies are so high there is no doubt. I have a lot of questions for my doctor!

 

[Jantype1]

There is absolutely nothing to.dread when it comes to getting the right treatment for your condition.
Fast acting insulin gives you flexibility to eat what you want when you want it.
It has kept me alive, driving, working, travelling, eating, exercising, partying, ... for 20 years.

Thank you for your positive words. I think I'm in denial and hoping that it will just go away.

 

[Finnlee]

When the doc gave it to me she said it wouldn't cause hypos because it is supposed to adapt according to the amount of sugar in your blood at any given time.

I'm not sure how it could do this unless there were little robots in the tablets actively making decisions on what to do based on your blood sugar. If that existed, everyone would be taking it!

I suspect that Januvia is more effective more if your body produces more insulin naturally. When I took two tablets on accident early on, it caused me to go low all morning. I was producing more insulin then. Now, two years later, I don't produce much insulin and I didn't notice a difference when I stopped taking it.

If you're newly diagnosed, you've probably got more self-made insulin, so Januvia is having more of an effect.

If you're going low when you do sports, you could try reducing your basal further or having a snack before you start the activity to get your blood sugar up a bit. I like granola bars for this.

When you move on to basal and bolus insulin (perhaps still with sitagliptin), you also have the option of reducing your bolus dose for the meal before the activity. When I go for a walk after lunch, I'll do something like 60% of my mealtime bolus to avoid going low on the walk. It's just one of the benefits of having more tools at your disposal - more flexibility.

 

[Jantype1]

I'm not sure how it could do this unless there were little robots in the tablets actively making decisions on what to do based on your blood sugar. If that existed, everyone would be taking it!

I suspect that Januvia is more effective more if your body produces more insulin naturally. When I took two tablets on accident early on, it caused me to go low all morning. I was producing more insulin then. Now, two years later, I don't produce much insulin and I didn't notice a difference when I stopped taking it.

If you're newly diagnosed, you've probably got more self-made insulin, so Januvia is having more of an effect.

If you're going low when you do sports, you could try reducing your basal further or having a snack before you start the activity to get your blood sugar up a bit. I like granola bars for this.

When you move on to basal and bolus insulin (perhaps still with sitagliptin), you also have the option of reducing your bolus dose for the meal before the activity. When I go for a walk after lunch, I'll do something like 60% of my mealtime bolus to avoid going low on the walk. It's just one of the benefits of having more tools at your disposal - more flexibility.

I'm not sure how it could do this unless there were little robots in the tablets actively making decisions on what to do based on your blood sugar. If that existed, everyone would be taking it!

I suspect that Januvia is more effective more if your body produces more insulin naturally. When I took two tablets on accident early on, it caused me to go low all morning. I was producing more insulin then. Now, two years later, I don't produce much insulin and I didn't notice a difference when I stopped taking it.

If you're newly diagnosed, you've probably got more self-made insulin, so Januvia is having more of an effect.

If you're going low when you do sports, you could try reducing your basal further or having a snack before you start the activity to get your blood sugar up a bit. I like granola bars for this.

When you move on to basal and bolus insulin (perhaps still with sitagliptin), you also have the option of reducing your bolus dose for the meal before the activity. When I go for a walk after lunch, I'll do something like 60% of my mealtime bolus to avoid going low on the walk. It's just one of the benefits of having more tools at your disposal - more flexibility.

 

[Jantype1]

Yes I know, it does sound a bit magical, the wonder drug. I just read that when it is associated with insulin you need to be wary of hypos.....
Yes I am newly diagnosed, I'm exactly 5 months in, I was diagnosed on D Day (6 June) and I live almost on one of the D-Day beaches in Normandy....you gotta laugh.
I'm in the honeymoon period and yes my pancreas is still producing insulin so I have to watch out for hypos in any case. The doctor put me on Januvia because my average glucose level was creeping up. Thanks to the magical powers of Januvia it's dropped back down to what it was when I was on Trulicity so it's definitely having a positive effect.
I have a long sports session tomorrow so I will reduce my basal a little and have a nice carbo stock up before I play, plus a banana on hand to bite into every 20 minutes! I do a granola bar when I'm walking for more than 45 minutes, love the peanut ones! However the hypos have been so bad lately I've had to resort to sugar lumps which I hate doing because as after when I have food I go really high for about four hours and that gets me so annoyed.
Hey ho it's a steep learning curve but I'm getting there.
Thanks for your messages, you have been a great help.

 

[Finnlee]

I was diagnosed on D Day (6 June) and I live almost on one of the D-Day beaches in Normandy....you gotta laugh.

I was diagnosed in the early hours of Friday the 13th (of August, 2021).

However the hypos have been so bad lately I've had to resort to sugar lumps which I hate doing because as after when I have food I go really high for about four hours and that gets me so annoyed.

Do you have a CGM (FreeStyle Libre 2 or 3, or Dexcom G6 or G7) yet? Those are really helpful for spotting downward trends, especially when exercising.

When I go for walks, I try to treat low blood sugars before they're hypos. I'll usually start having something when I hit 100mg/dL (5.5 mmol/L) be safe, unless I'm walking to a bakery, then I might let it go a little lower since I know there's a tasty low treatment waiting for me in the cafe.

Treating early means I can have tastier (but slower) hypo treatments, like granola or fruit rather than glucose tabs. Juice is also a good fast-acting low treatment for me. I often keep a small 330mL bottle in my bag (it's about 33g of sugar, so multiple hypo treatments in one bottle).

It does take some time to figure out what an appropriate low treatment dose is for different situations. I can be fine with one glucose tab (2.2g sugar) overnight, but need 10g of sugar or more when walking. And it depends on how much insulin I have on board (this will be more important to consider when you start on a bolus insulin). Eventually you'll figure out what your body needs.

Also, glucose tablets are generally tastier than plain sugar lumps if that's what you're using now. Dextro Energy is the most popular glucose tab brand in Germany and it's available in the UK, so probably also in France. It's usually in the candy aisle and/or at the checkout tills of supermarkets and drugstores here. They also usually have some at the pharmacies. Be aware some brands and flavours taste better than others, so find what you like.

 

[Jantype1]

I was diagnosed in the early hours of Friday the 13th (of August, 2021).


Do you have a CGM (FreeStyle Libre 2 or 3, or Dexcom G6 or G7) yet? Those are really helpful for spotting downward trends, especially when exercising.

When I go for walks, I try to treat low blood sugars before they're hypos. I'll usually start having something when I hit 100mg/dL (5.5 mmol/L) be safe, unless I'm walking to a bakery, then I might let it go a little lower since I know there's a tasty low treatment waiting for me in the cafe.

Treating early means I can have tastier (but slower) hypo treatments, like granola or fruit rather than glucose tabs. Juice is also a good fast-acting low treatment for me. I often keep a small 330mL bottle in my bag (it's about 33g of sugar, so multiple hypo treatments in one bottle).

It does take some time to figure out what an appropriate low treatment dose is for different situations. I can be fine with one glucose tab (2.2g sugar) overnight, but need 10g of sugar or more when walking. And it depends on how much insulin I have on board (this will be more important to consider when you start on a bolus insulin). Eventually you'll figure out what your body needs.

Also, glucose tablets are generally tastier than plain sugar lumps if that's what you're using now. Dextro Energy is the most popular glucose tab brand in Germany and it's available in the UK, so probably also in France. It's usually in the candy aisle and/or at the checkout tills of supermarkets and drugstores here. They also usually have some at the pharmacies. Be aware some brands and flavours taste better than others, so find what you like.

Yes I do have a CGM - Freestyle Libre 2 linked to my phone and shared with the hospital so if I have a query they can access my readings which saves time on multiple hospital appointments!
I agree that it's best to react as soon as the arrow is pointing down. I'll have a milky coffee to try and make it level up a bit if mealtime is not too far away, or I'll bring forward my meal by 30 minutes so I'm not stuffing carbs into my body and then having a meal!
I usually only leave fours hours between meals so I will have a wee snack at about 4pm which is about the time we go walking. Yesterday my husband insisted that I eat my cereal bar before we went out - I find that hard to do when I'm not hungry - but he was right and our hour walk went without a hitch.
No glucose tablets here unfortunately but I'll get some next time I'm in the UK thanks for the advice.
I had a message from my doctor yesterday - I'd contacted her because my ketones are very low, 0.1mmol, and she said it was ok but......you guessed, it's time to start considering bolus to cover the spikes I get after meals and to make things more comfortable for me. I knew that it was only a matter of time but I feel like I'm letting myself down. She confirmed that Januvia is helping me to produce insulin but it won't last much longer and I'm mainly managing my diabetes through diet and exercise

 

[Jantype1]

Thank you all for your input and excellent advice. I haven't been a member of this group for long but the help and empathy I've received has made me more positive.
I had a reply from my doctor about Januvia. It's given to type 1s here in France to help stimulate insulin production but only as a temporary measure and only during the honeymoon period when insulin is still being produced by the pancreas.
The next step will be fast acting insulin to reduce the spikes I'm still having after meals despite being on a low carb diet and doing lots of exercise.
Have a good day all!