Sitagliptin

[Becka]

For those who have taken Sitagliptin, I am wondering how long it took to have an effect and what side effects people have experienced?

As detailed on another thread, I had been on 80mg Gliclaizde and 2g Metformin since diagnosis, but earlier this year the Gliclazide just stopped working. I increased dose until trying the maximum of 320mg, all without any difference to my levels. I spoke to the surgery pharmacist who added 100mg Sitagliptin to my prescription whilst keeping Gliclazide at 320mg. I think they misunderstood me as saying that the Gliclazide alone was not enough, but I wanted to see if it helps anyway.

I started Sitagliptin Sunday without Gliclazide. This is both see what effect the new medication has itself, and because if the two helped each other then I could gradually add Gliclazide to avoid hypos from starting on the maximum dose.

However last night I did not sleep well, feeling very nauseous. Though today has been better, I have still felt generally unwell with moments of nausea. I feel sure this because of the medication as, having been shielding since the lockdown started, it cannot be anything someone passed to me.

Because nausea is listed as a common side effect, I was wondering whether anyone with experience of it can say whether this is a permanent or one that goes away after an initial period? And does it normally occur when taken alongside Gliclazide? The information leaflet lists side effects for different combinations, but nausea is only lasted for when taken with Metformin, it is not included in the section where it is taken with a sulphonylurea as well.

And despite it initially seeming like it was having an effect, I was back to the now usual higher levels yesterday evening and today. So maybe the improved readings may have been just normal random variance, and the lower level on Monday evening seems more than I would have expected from this medication alone. Is it too early to expect to see any consistent benefit yet?

These are my readings from the past ten days for first thing in the morning and before an evening meal, the latter usually after fasting for around five hours:

Apr 20: 13.3 / 13.7 ** After having taken 320mg Gliclazide & 2g Metformin
Apr 21: 14.8 / 15.9
Apr 22: 15.6 / 14.3
Apr 23: 16.4 / 15.6

Apr 24: 13.6 / 17.9 ** After having taken just 2g Metformin
Apr 25: 14.3 / 11.7
Apr 26: 14.2 / 20.9

Apr 27: 12.7 / 6.9 ** After having taken 100mg Sitagliptin & 2g Metformin
Apr 28: 10.1 / 17.7
Apr 29: 17.5 / 18.1

That is pretty similar to how it has been for a while regardless of medication. There have been occasional single figure readings as I had on Monday evening, but these are uncommon. So thankfully have been highs much worse than the one on Sunday evening.

Thank you.

 

[grovesy]

It sounds as if it does not suit you. I used to take but was swapped to another gliptin about a year ago as the CCG advised. I had no problems. I am confused by the mention of Hypos as the Gliclazide that causes the hypos not the Sitagliptin.

 

[everydayupsanddowns]

Sorry to hear about your experience of Sitagliptin @Becka

I think you should discuss your side effects with your GP or pharmacist.

Your BGs are also still running on the high side - roughly double where they would ideally be... I can’t remember from your earlier posts how long you’ve been diagnosed, and whether you have been checked for c-Peptide or GAD antibodies in case you are LADA or gradually developing T1, and really need insulin to manage your BG levels.

Im also not sure what changes and adaptations you’ve made to your menu to support your meds? Are you reducing your carbohydrate intake - not just sugary things, but ’healthy wholegrain’ carbs too?

 

[Becka]

My experimenting is because my G.P. was doing nothing to help me, so now I am not doing anything to my diet to keep things consistent while I track the medication effects. Although originally I had no choice because I had very limited access to shopping until I was put on the government's shielding list. But it is unchanged from what used to give me good control on the original prescription. Which was from being diagnosed in 2014 until sometime around the start of the year.

As I said on the original thread, I want to have as much information as possible so I can make a clear case to my G.P. So I want to know how long Sitagliptin normally takes to be effective, because I feel sure if I said anything now they will say three days is not enough and dismiss me. Which is a lot easier to do when you are unable to visit in person.

But at the moment the risk of covid19 is seen as greater than my higher levels. Even the pharmacist originally want to wait two months for blood tests until I expressed my worry over leaving things as they are for that long. If I can demonstrate medication is not working, if that is the case, then maybe they will see that risk as too much to ignore. But if not I am going to be no worse off for experimenting.

The mention of hypos is because the pharmacist prescribed the three medications to be taken together: 100mg Sitagliptin, 320mg Gliclazide, and 2g Metformin. So my worry is that if the Sitagliptin does something that makes the Gliclazide effective again then at the highest dose it would risk hypos.

As shown in my levels, Gliclazide has ceased to have any effect at all. Taking 320mg is as beneficial as not taking it. I explained this to the pharmacist, but in hindsight I think they must have taken it as still having some effect, but that 320mg is not enough. I do not think that is actually possible for the drugs to interact in that way, but I do not want to take the risk.

I mostly slept okay last night, though still feel more generally unwell. This morning's level was 13.3. There was a time I would get worried about anything in double figures, now I feel some relief when it goes back to down 13!

 

[rebrascora]

If it was me, particularly in the current climate, I would be experimenting with reducing my carb intake to lower those levels rather than experimenting with various combinations of drugs which often come with unpleasant side effects.

If this is LADA or Type 1, reducing your carb intake will put less pressure on your pancreas and may enable it to putter along for a few more weeks/months until things with Corona virus settle down a bit and you can get better support, but the medication you are taking is putting increasing pressure on what seems to be an already struggling pancreas.

 

[DaveB]

Hi. I think you need to suspect you are T1 and may need insulin shortly. I've been down the same route with 320mg/day Gliclazide and then Sitagliptin was added. The fact that 320mg Glic no longer works shows your beta cells are failing like mine did. Ask the GP for the two tests GAD and C-Peptide. I had to do mine privately as my GP refused to accept I could be T1. The C-Peptide is the more useful test as it shows your insulin production level. The only side effect I had with Sitagliptin was low headache for a week. BTW the Gliptins work by stopping an enzyme that blocks insulin production after a meal. In itself it doesn't cause hypos and only ever has a small effect.

 

[Irish-Chris]

For those who have taken Sitagliptin, I am wondering how long it took to have an effect and what side effects people have experienced?

As detailed on another thread, I had been on 80mg Gliclaizde and 2g Metformin since diagnosis, but earlier this year the Gliclazide just stopped working. I increased dose until trying the maximum of 320mg, all without any difference to my levels. I spoke to the surgery pharmacist who added 100mg Sitagliptin to my prescription whilst keeping Gliclazide at 320mg. I think they misunderstood me as saying that the Gliclazide alone was not enough, but I wanted to see if it helps anyway.

I started Sitagliptin Sunday without Gliclazide. This is both see what effect the new medication has itself, and because if the two helped each other then I could gradually add Gliclazide to avoid hypos from starting on the maximum dose.

However last night I did not sleep well, feeling very nauseous. Though today has been better, I have still felt generally unwell with moments of nausea. I feel sure this because of the medication as, having been shielding since the lockdown started, it cannot be anything someone passed to me.

Because nausea is listed as a common side effect, I was wondering whether anyone with experience of it can say whether this is a permanent or one that goes away after an initial period? And does it normally occur when taken alongside Gliclazide? The information leaflet lists side effects for different combinations, but nausea is only lasted for when taken with Metformin, it is not included in the section where it is taken with a sulphonylurea as well.

And despite it initially seeming like it was having an effect, I was back to the now usual higher levels yesterday evening and today. So maybe the improved readings may have been just normal random variance, and the lower level on Monday evening seems more than I would have expected from this medication alone. Is it too early to expect to see any consistent benefit yet?

These are my readings from the past ten days for first thing in the morning and before an evening meal, the latter usually after fasting for around five hours:

Apr 20: 13.3 / 13.7 ** After having taken 320mg Gliclazide & 2g Metformin
Apr 21: 14.8 / 15.9
Apr 22: 15.6 / 14.3
Apr 23: 16.4 / 15.6

Apr 24: 13.6 / 17.9 ** After having taken just 2g Metformin
Apr 25: 14.3 / 11.7
Apr 26: 14.2 / 20.9

Apr 27: 12.7 / 6.9 ** After having taken 100mg Sitagliptin & 2g Metformin
Apr 28: 10.1 / 17.7
Apr 29: 17.5 / 18.1

That is pretty similar to how it has been for a while regardless of medication. There have been occasional single figure readings as I had on Monday evening, but these are uncommon. So thankfully have been highs much worse than the one on Sunday evening.

Thank you.

Hi Becka,
I'm T2 but must admit that I've been silly if not stupid as regards my monitoring and control. I was on Sitagliptin last year along with Metformin and something else. I was hospitalised with Ketone acidosis due to the Sitagliptin reacting with an antibiotic I was given for another issue. Very unpleasant and I was put on insulin leaving hospital. that didn't suit me but that's another story. I would definitely question multiple medications as we all have different metabolism.
Chris

 

[Becka]

Thanks all. I think the last few days have shown the full Gliclazide dose is very unlikely to do anything, so I have decided to resume that tonight. Assuming nothing improves, or gets worse that I have to stop the medication, then next Monday I can send all the details to the surgery to see if a G.P. wants to do anything now or just wait.

But I will ask for the tests, as DaveB suggests, and would be surprised if they refuse as I already have two other autoimmune conditions. They probably should have checked when I was diagnosed, as I had no symptoms and was put straight on Gliclazide after they did a ketone urine test to decide the type.

Originally I thought it was a medication issue, but I too now think my pancreas is finally giving up. Though I must still be producing some insulin else I would expect higher levels. So I did think Sitagliptin would have made some noticeable effect, and is also why I have not tried stopping Metformin

After contacting a G.P. I will try to follow your advice, rebrscora, and see what I can do with my diet. But it alone will not be enough, which is why I need to see what effect the medication was having first. Besides, I only gained access to fresh food last week, after my M.P. intervened, so originally had no choice but to experiment anyway. But this way I am better informed to be able to tell the G.P. what is happening and what I need, rather than just having to trust them (which I no longer do) and everything dragging out even longer after the isolation ends.

I am not too worried about ketoacidosis at the moment as I do not have symptoms, and I always read the information leaflets with drugs to ensure there are no problems with other medications. Which has saved me when a G.P. once prescribed something that was contraindicated with the immunosuppressant I was taking. But those three medications together is the next step in the normal T2 pathway, so I understand why they were prescribed. The pharmacist just followed the usual process rather than listening to what I said.

Thanks all!

 

[Becka]

An update. The nausea I felt when first starting the new medication wore off after a few days, though I have been feeling bad again today. However on Thursday night I restarted taking 320mg Gliclazide and it looks like the combination with Sitagliptin is having an effect to my fasting levels:

May 1: 15.8 / 5.9
May 2: 14.1 / 11.7
May 3: 10.7 / 5.8
May 4: 10.6 / 12.5
May 5: 11.8 / 15.7
May 6: 9.9 / 8.9

One caveat is that I lost my appetite on Saturday, and have not eaten an evening meal from May 2nd onwards. That night I ended up only eating a biscuit, and only because I needed to have something to take with my tablets. So yesterday and today I decided to have a main meal at dinner time instead of in the evening to make sure I ate something properly. As appetite is not listed as a side effect of the medication, hopefully it is just something passing.

Those levels have still not established a pattern, but seem to be about three mmol/L down from where they had been. Which is something, but still does not seem a good result for three medications at their maximum permitted doses. It may also be killing off the cells in my pancreas, but it has been a long time since I had a day where both readings were in single digits.

 

[Becka]

I just through I would update you all to say I have finished experiments and sent the final report to my G.P.!

Sitagliptin has been very helpful in reducing my fasting levels by about 4 mmol/L, although they are still too high averaging around 10 mmol/L. It must have taken longer to become effective then I expected as stopping Gliclazide again did not have any adverse effect.

These are my levels for the past week on 100mg Sitagliptin and 2g Metformin.

May 20 — 9.7 / 11.6
May 21 — 9.2 / 14.7
May 22 — 9.3 / 9.2
May 23 — 9.3 / 8.9
May 24 — 8.3 / 13.5
May 25 — 11.4 / 8.6
Today — 10.2

Although not listed as side effects, I do feel I have been putting on weight since starting Sitagliptin, and, conversely, a loss of appetite. I have also been experiencing more joint pain, though that may be coincidence.

But I have provided all of that information, as well as details of my experimenting with the Gliclazide dose, and asked about taking GAD antibody and C-petide tests once shielding ends. I also reminded them that I am especially concerned because I was a low diabetic risk, and it was diagnosed alongside two other autoimmune conditions.

Sadly my experience suggests they will ignore my email, but at least it is now all on record for when I can attend in person. But is is probably better if they do not think there is a problem just yet else I might have to suddenly go on holiday to Durham!

 

[Magarnett]

For those who have taken Sitagliptin, I am wondering how long it took to have an effect and what side effects people have experienced?

As detailed on another thread, I had been on 80mg Gliclaizde and 2g Metformin since diagnosis, but earlier this year the Gliclazide just stopped working. I increased dose until trying the maximum of 320mg, all without any difference to my levels. I spoke to the surgery pharmacist who added 100mg Sitagliptin to my prescription whilst keeping Gliclazide at 320mg. I think they misunderstood me as saying that the Gliclazide alone was not enough, but I wanted to see if it helps anyway.

I started Sitagliptin Sunday without Gliclazide. This is both see what effect the new medication has itself, and because if the two helped each other then I could gradually add Gliclazide to avoid hypos from starting on the maximum dose.

However last night I did not sleep well, feeling very nauseous. Though today has been better, I have still felt generally unwell with moments of nausea. I feel sure this because of the medication as, having been shielding since the lockdown started, it cannot be anything someone passed to me.

Because nausea is listed as a common side effect, I was wondering whether anyone with experience of it can say whether this is a permanent or one that goes away after an initial period? And does it normally occur when taken alongside Gliclazide? The information leaflet lists side effects for different combinations, but nausea is only lasted for when taken with Metformin, it is not included in the section where it is taken with a sulphonylurea as well.

And despite it initially seeming like it was having an effect, I was back to the now usual higher levels yesterday evening and today. So maybe the improved readings may have been just normal random variance, and the lower level on Monday evening seems more than I would have expected from this medication alone. Is it too early to expect to see any consistent benefit yet?

These are my readings from the past ten days for first thing in the morning and before an evening meal, the latter usually after fasting for around five hours:

Apr 20: 13.3 / 13.7 ** After having taken 320mg Gliclazide & 2g Metformin
Apr 21: 14.8 / 15.9
Apr 22: 15.6 / 14.3
Apr 23: 16.4 / 15.6



Apr 24: 13.6 / 17.9 ** After having taken just 2g Metformin
Apr 25: 14.3 / 11.7
Apr 26: 14.2 / 20.9

Apr 27: 12.7 / 6.9 ** After having taken 100mg Sitagliptin & 2g Metformin
Apr 28: 10.1 / 17.7
Apr 29: 17.5 / 18.1

That is pretty similar to how it has been for a while regardless of medication. There have been occasional single figure readings as I had on Monday evening, but these are uncommon. So thankfully have been highs much worse than the one on Sunday evening.

Thank you.

I have for no explicable reason been having high readings was prescribed 1/2 tablet of gliklaside
which seemed to help a bit but today early morning test 14.6 after lunch boiled egg and crispbread
18.4 I have been advised by GP to do four tests a day. For three years I was always under ten then
I had a virus late February not tested but all the symptoms of Covid 19 and since then erratic readings. My GP is phoning me tomorrow to check on me what other treatments are there I take slow release metformin twice a day. When the readings are high I feel very muzzy headed.

 

[everydayupsanddowns]

Thanks for the update @Becka - hope you can get your GAD/cPep tests taken in due course. Keep pressing for them, and don’t let it slide!

I have for no explicable reason been having high readings was prescribed 1/2 tablet of gliklaside
which seemed to help a bit but today early morning test 14.6 after lunch boiled egg and crispbread
18.4 I have been advised by GP to do four tests a day. For three years I was always under ten then
I had a virus late February not tested but all the symptoms of Covid 19 and since then erratic readings. My GP is phoning me tomorrow to check on me what other treatments are there I take slow release metformin twice a day. When the readings are high I feel very muzzy headed.

Sorry to hear you are struggling @Magarnett - sounds like your meds could do with a bot of an overhaul. Do you have a way to get in touch with your nurse or GP, I‘m not surprised you are feeling grim with those levels.

It might be worth cutting your carb intake back further in the meantime to help your body cope?