Newbie says hello & praise for Jardiance

Lilymills

Lilymills

Member
Relationship to Diabetes
Type 2
I have had Type II for the best part of 30 years. For the first couple of decades I controlled it with a low carb diet, sometimes badly, sometimes well. I am a binge over eater.

I was a very early adopter of Michael Mosley’s diets and I still cook Fast800 recipes today. I was also an early adopter of very low calorie shake regimes when it was considered dangerous, Boots would not sell you keto sticks over the counter and you couldn’t find a doctor for support. I was absolutely delighted a few years ago when Roy Taylor came on the scene with his Newcastle Study and his proof of concept of vlcds possibly reversing Type II. And now the treatment is enjoying limited trials in the NHS. What a long way it’s come.

Unfortunately I do not seem to be in the vlcd reversal of Type II cohort, not everyone is. I always felt markedly better and lost weight on the shakes, but no-one would take me seriously or take my HbA1c! For the last 10 years I have seen a diabetic nurse for check ups and she wasn’t interested at all in low carb diets (over low fat), even though the results delighted her when I cooked my Fast800 recipes! Now she has retired and younger staff seem very much up for it. In 30 years of Type II treatment, attitudes and medicines have never felt better to me!

One blip I’m currently going through has been upsetting. I was given several weeks Jardiance to try. For me it has worked like a miracle drug, restoring my energy levels well towards what they once had been. I thought I had been written up for it (really silly) and when I ran out, my eager requests for more were refused amid much dismay for me. I have to see a nurse first and have a blood test. Duh - of course. Why didn’t I think of that?

That was nearly three weeks ago as there were no earlier appointments, so an abrupt and shocking cut off. I have been on a descent through many old returned symptoms, both remembered and not, and the comparisons have been enlightening and horrifying. Also, back to cancelling things that I was beginning to enjoy again and not having enough energy to look after myself properly.

I see the nurse on Thursday and I hope I am passed for a new prescription without having to see a doctor as well and have more delays (plus the 8.00 am telephone scramble for an appointment only, naturally, at the receptionist’s discretion).

If you got this far - thanks so much xx
 
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Welcome to the forum, hopefully things are moving in the right direction now.
 
Thanks for sharing your experiences @Lilymills - yes there have been pretty mind-blowing changes in the treatment options and HCP attitudes to different strategies over the past 10-15 years haven’t there! I remember when low carb was seen as some crazy dangerous fringe idea, and now it’s far more welcomed into the mainstream, and is the go-to recommendation in many GP surgeries. Along with the rethink about the inevitably progressive nature of T2D, of course.

Hope the appointment goes well this afternoon, and you are given access to the med that you’ve found so effective. Hopefully the decision can be taken then and there without any more hopps to jump through.

Let us know how you get on.
 
Thank you for the welcome. I got the Jardiance repeat! It was requested immediately. I explained how rotten and upset I felt after being without it for a whole 17 days. The nurse was horrified and so was a member of the admin staff and both said I must report it to the practice manager whose email I’ve been given. They are concerned that there’s a lack of training in some of the reception staff which needs to be put right.
 
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Lilymills said:
Thank you for the welcome. I got the Jardiance repeat! It was requested immediately. I explained how rotten and upset I felt after being without it for a whole 17 days. The nurse was horrified and so was a member of the admin staff and both said I must report it to the practice manager whose email I’ve been given. They are concerned that there’s a lack of training in some of the reception staff which needs to be put right.
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lack of reception staff why did they not put it on repeat so you would not have had to do this? Did the clinical staff not prescribe or did the receptionist not give you an appointment?
I'm glad Jardiance helps.
I am trying without Jardiance but getting the same problems if not worse while on it.
I am still glad you got your prescription and coping with your diet now.
 
stephenS50 said:
Hello @Lilymills and welcome to the forum.
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Thank you.
Nayshiftin said:
lack of reception staff why did they not put it on repeat so you would not have had to do this? Did the clinical staff not prescribe or did the receptionist not give you an appointment?
I'm glad Jardiance helps.
I am trying without Jardiance but getting the same problems if not worse while on it.
I am still glad you got your prescription and coping with your diet now.
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Thank you for your message. Both. I’d had my first round of Jardiance and I had not been put on repeat by clinical staff. I had no idea until the pharmacist told me I’d been refused by which time I only had one tab left. I rang the surgery and heard that I had to see the diabetes nurse first, which seemed obvious once I knew. The nearest appointment was 17 days away. Jardiance had made such a difference, actually quite transformative, which everyone noticed. I felt I was getting my life back. So I wanted to try and get a repeat prescription sooner than 17 days. I was alarmed at coming off it for so long and losing both my mental and physical health, which has happened. Despite several tries, the receptionist would not even give me a telephone appointment sooner to speak with a clinician as she did not consider me emergency enough.

I’m sorry Jardiance did not work for you. I hope you can find something that works and makes you feel better.
 
Lilymills said:
Thank you for the welcome. I got the Jardiance repeat! It was requested immediately. I explained how rotten and upset I felt after being without it for a whole 17 days. The nurse was horrified and so was a member of the admin staff and both said I must report it to the practice manager whose email I’ve been given. They are concerned that there’s a lack of training in some of the reception staff which needs to be put right.
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Ah that’s lovely news to start my evening @Lilymills

So pleased you’ve had the repeat reinstated. And good to hear that the nurse and admin staff want to follow this up and e sire it doesn’t happen to anyone else.
 
Lilymills said:
Thank you.


Thank you for your message. Both. I’d had my first round of Jardiance and I had not been put on repeat by clinical staff. I had no idea until the pharmacist told me I’d been refused by which time I only had one tab left. I rang the surgery and heard that I had to see the diabetes nurse first, which seemed obvious once I knew. The nearest appointment was 17 days away. Jardiance had made such a difference, actually quite transformative, which everyone noticed. I felt I was getting my life back. So I wanted to try and get a repeat prescription sooner than 17 days. I was alarmed at coming off it for so long and losing both my mental and physical health, which has happened. Despite several tries, the receptionist would not even give me a telephone appointment sooner to speak with a clinician as she did not consider me emergency enough.

I’m sorry Jardiance did not work for you. I hope you can find something that works and makes you feel better.
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It was not bad I now know it did not change my blood sugars. if anything I am better off without. So this diabetes thing beats me.
I know insulin is needed for type one. type 2 these meds are supposed to help but my test results do not make that clear, to me, at all.
 
Nayshiftin said:
It was not bad I now know it did not change my blood sugars. if anything I am better off without. So this diabetes thing beats me.
I know insulin is needed for type one. type 2 these meds are supposed to help but my test results do not make that clear, to me, at all.
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What have you tried so far?
 
Lilymills said:
What have you tried so far?
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Metformin and i really was sick on that.
Alogliptin - I came out in a rash
Glicazide - Urine tract infection but was given on holiday so kept quiet and did not go back on it
Low carb diet on own worked but then started on Empagliflozin that was then increased but no side effects except weight gain and blood sugars went up snd I was starving.
So took off not committed to any diet until 5 Sept. where i can go on soup n shake diet. II will be hungry and i don't like the food/drinks .
Low carb diet is quite expensive and can be difficult to keep to 100%.
I do not get low enough for to go into remission . Hence I need to do something like the soup n shake.
However the stricter i am on the low carb the higher my reading.
Blood sugars go down after i eat in the morning that I do know.
They go up after lunch but stabilise for evening meal.
I struggle evening meal some up some down. Some I empty quick and get hungry at night. If hubby is out i will eat . That ruins the diet. So that will be hard on souos n shakes.
i am up in night now having a naughty coffee. That too has milk in it. Cream hubby says made my cholesterol bad and i gained weight.
i lost a little when i followed the Diabetes UK diet
but was expensive all the flours and me cooking . I guess he was not keen on the different meals and we could not go out. We will not on the shakes either.
The problem is if diet cures thus alone then im diabetic because i am fat but nothing so far has made me thin enough so once i get there . A long way then maybe I will not be diabetic but my life is going to be so hard.
i really live on coffee which is going to be one mug a day on the soups n shake diet
Not looking forward to life then.
 
Do you get any support from a surgery/diabetes nurse, over and above physical testing. Support for the day to day managing of it?
 
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