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Lyxumia - side effects

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Spoon said:
Hello - I am now on Day 10 of the Lyxumia and I have just had my medication review with the Pharmacist. Yesterday I was OK - a bit dizzy and tachycardic and also ravenous, but it was bearable. Today I am very dizzy and nauseous and feel pretty rough, though my heart rate is normal. I do feel like I'm going to faint though. BG has had little effect - was 16.3 this morning and 14.9 just now. Pharmacist is going to get back to me to see if they're going to try me with the full dose after this week. I've continued taking it despite feeling rough, as I really want to give it a full try. No affect on weight and 'healthy eating' is a challenge as I feel so sick all the time, so just want to nibble on bland things. Will keep you all posted!
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Oh spoon it sounds like it’s really difficult going for you! I hope the pharmacist has some helpful advice when they get back to you.
 
Lucyr said:
Oh spoon it sounds like it’s really difficult going for you! I hope the pharmacist has some helpful advice when they get back to you.
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Thanks for the sympathy. Pharmacist has phoned me back to say the hospital consultant has suggested Lyxumia so it sounds like my gp and the endo are corresponding about this which is good to know. They want me to do the full 14 day initial dose which I’m happy to do, just to see if things settle down any. If they do they’ll put me on the maintenance dose and review after 2 weeks. If not, they’re going to take me off it and try something else. I really want it to work and said this to the pharmacist. The pharmacist replied that I’ve got three out of the top 5 side effects and that they’re quite common. I’ve now eaten some lunch and felt a bit better but now am feeling dizzy and sick again, with the added joy of tiredness gah!!
 
rebrascora said:
I haven't heard of this particular medication being mentioned on the forum before but it sounds similar to Ozempic which causes similar side effects. There is a current thread where a member is documenting their experience with it here...

Ozempic | Diabetes UK

Perhaps that might be helpful for you to compare notes
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Ah that was a good thought @rebrascora

Here are some other GLP-1 receptor agonists

GLP-1 agonists

GLP-1 agonists are a type of medication you might need to take if you have type 2 diabetes. They are also known as GLP-1 analogues, GLP-1 RAs and incretin mimetics.
www.diabetes.org.uk www.diabetes.org.uk

Sorry to hear you are having such a tough time @Spoon :(

Hope your symptoms subside soon.
 
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Latest update. Yesterday was day 12 and I was wiped out until 2pm. I’d had sharp stomach ache since Friday and felt very nauseous and dizzy then started getting ketones in my urine - only low levels but I knew it was a warning sign. I also had intense carb cravings - it’s supposed to be an appetite suppressant but to me felt very much like an appetite accelerant! So phoned my GP this morning. Have been told to stop taking it but keep taking my gliclizide and alogliptin. Not really sure what is going to happen next but am going to be super strict with the carbs and see what happens with my BG and Ketones and I suppose phone my GP again if they get worse! Looking back at my BG records my levels really shot up taking the Lyxumia - on Friday before bed my reading was over 25 mmol . Feeling quite confused about what is happening next so have asked my GP receptionist to see if the pharmacist is ringing me back with a plan as he said he would last week (no appointment is on the system). I guess TBC . In the meantime I feel pretty wiped out and thirsty. BG this morning was 14.1 then 14.7 before lunch (hadn’t eaten anything) which is lower than it has been.
 
If your BG isn't lower and you don't feel any better tomorrow morning - ring 111.
 
trophywench said:
If your BG isn't lower and you don't feel any better tomorrow morning - ring 111.
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Thanks Trophywench. Luckily before dinner my reading was 9.5 - I can’t believe so much better - let’s see what my night time reading is as that is usually the corker. Feeling and looking better. Have an appointment booked on Wednesday with my gp so let’s see what they say. Still have trace ketones in urine but better than it was fingers crossed
 
Hi spoon. Given you said you’re going to be super strict with carbs and are monitoring ketones, be aware that a low carb diet can cause ketones so those might go up if you’re restricting carbs.
 
Lucyr said:
Hi spoon. Given you said you’re going to be super strict with carbs and are monitoring ketones, be aware that a low carb diet can cause ketones so those might go up if you’re restricting carbs.
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Thanks Lucy, I did remember this tonight as I think in my alogliptin leaflet it says not to do very low carb. I’ve had some carbs - a bit of potato in my celeriac mash with tea and some fruit and then a slice of left over pizza for supper. Just haven’t overdone them. Appreciate you looking out for me! BG 14.5 before bed which isn’t too bad for me and a lot better than last night which was 21! Also no ketones! Hooray!
 
I continue to improve now Lyxumia has been halted - BG today has been pretty stable, 12.3 - 12.7 in the day and just now 13 before bed. Also no ketones. I know this is still high but so much better than the high BG rollercoaster on Lyxumia where I would start the day on 16 and end at 25 I have no idea why am injection meant to stop hunger pangs and lower BG did the exact opposite for me and I feel a bit stupid about it all as every medication I’ve been given has given me side effects (and not worked). All a bit ridiculous. But I’m feeling much better! Let’s see what they decide to do next ...
 
Spoon said:
I continue to improve now Lyxumia has been halted - BG today has been pretty stable, 12.3 - 12.7 in the day and just now 13 before bed. Also no ketones. I know this is still high but so much better than the high BG rollercoaster on Lyxumia where I would start the day on 16 and end at 25 I have no idea why am injection meant to stop hunger pangs and lower BG did the exact opposite for me and I feel a bit stupid about it all as every medication I’ve been given has given me side effects (and not worked). All a bit ridiculous. But I’m feeling much better! Let’s see what they decide to do next ...
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To me it just demonstrates we all are different and react differently. I never found Metformin affect my appetite or weight loss greatly, though I did lose weight on Gliclazide even though many report weight gain.
I hope they find something that works for you!
 
grovesy said:
To me it just demonstrates we all are different and react differently. I never found Metformin affect my appetite or weight loss greatly, though I did lose weight on Gliclazide even though many report weight gain.
I hope they find something that works for you!
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Gliclizide hasn’t made me gain either but does make it pretty difficult to lose weight. Metformin didn’t make me lose weight either - in fact I gained weight as it made me swell massively, all rectified by furosemide, lost a stone in 2 days
 
Spoon said:
Gliclizide hasn’t made me gain either but does make it pretty difficult to lose weight. Metformin didn’t make me lose weight either - in fact I gained weight as it made me swell massively, all rectified by furosemide, lost a stone in 2 days
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That is quite a reaction to the Metformin.
 
grovesy said:
That is quite a reaction to the Metformin.
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Yeah I took metformin for a long time, sadly didn’t bring my HBA1C down and I couldn’t tolerate it (the usual gastric issues) then the swelling incident. I had taken it years and years ago as a preventative due to having PCOS (it’s often given as a way to sort it) and had to stop because it gave me a rash along with the constant diarrhoea and dry heaving - oh the joys of Type 2 medication. Why do they all have to feel like a punishment?
 
Hello an update from me. Finally got an appointment with the community diabetic nurses. when I got there today I met with a consultant. To cut a long story short they think I have Type 2 (though have given me a c peptide test) and are starting me on insulin in the hope that it will give my pancreas a rest, get my blood glucose down and controlled with the aim of then maintaining it on tablets when pancreas recovers. So let's see.
 
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