Anyone on the Ascend Plus trial?

[Mrs Redboots]

Oh well done you - just a thought but charity shops are great for getting clothes you're only going to wear for a short while - then you can happily donate them back when they get too big and everybody wins. Keep posting.

Yes, I've been visiting them. Picked up a pair that are so not size 16, whatever they say - I'll have to take them back. Nearest shop is happy to receive my too-big trousers, and tells me their own summer stock will be being put up during the week, so I'll take a bag down tomorrow.

 

[Mrs Redboots]

Update: I bought 2 pairs of cheapo size 16 trousers on Amazon, not quite believing they would go anywhere near me - and they are now too big! Weight this morning 78.85 kg!

I was going to come on here and ask when I could expect the next 6-pack of tablets, as I've just started the penultimate one, and will finish those before the end of our upcoming holiday - I'll take the last pack with me, of course, but was concerned about the replacement. And before I got round to it, I got an email saying it had been posted, and they arrived next day!

 

[JackA2026]

I am 2 weeks into 7mg and am absolutely miserable, the nausea is so bad often retching. I don't think it is worth it if it makes us miserable. I have spoken to my doctor about anti nausea tablets as ginger, or eating small amounts regularly doesn't work. Let's hope the anti nausea tablets work

Hi, I am two years into my trial and definitely on the placebo as I don’t get the symptoms I had at the start. I am prescribed ondansetron as I get nausea with gallbladder issues. They were a life saver for the nausea with the first lot of real semaglutide. A lot of doctors won’t prescribe them as they’re expensive (what a paramedic told me when I had sepsis but he said they are the gold star of anti nausea meds) but if you can get them they’re definitely a help, especially if you are on the semaglutide.

 

[Su8]

I did find after 2 weeks on 7mg the nausea became manageable but I was very lucky in not getting bad side effects. It's a bigger leap to 14mg so if the anti-nausea pills help, you might want to speak to the ascend plus team about staying at 7mg in two months time. They're very helpful.

 

[Mrs Redboots]

Now, here's an interesting development. Just before I went on holiday I had my regular screening for diabetic retinopathy. Always before they have said I am developing it and they need to keep an eye on it, come back in six weeks/three months/six months, etc. But this time, the letter that was waiting for me when I came back from holiday said there were no signs of it, and I needn't come back for another year! I did have an operation to remove an epiretinal membrane last summer, but I was screened fairly soon afterwards with the usual result. I have checked with the AIs, who say that it can heal spontaneously if one's diabetes is better managed - I can only assume that with the oral semaglutide, this is exactly what has happened! Has anybody else had a similar experience?

 

[tioca]

Now, here's an interesting development. Just before I went on holiday I had my regular screening for diabetic retinopathy. Always before they have said I am developing it and they need to keep an eye on it, come back in six weeks/three months/six months, etc. But this time, the letter that was waiting for me when I came back from holiday said there were no signs of it, and I needn't come back for another year! I did have an operation to remove an epiretinal membrane last summer, but I was screened fairly soon afterwards with the usual result. I have checked with the AIs, who say that it can heal spontaneously if one's diabetes is better managed - I can only assume that with the oral semaglutide, this is exactly what has happened! Has anybody else had a similar experience?

The results of my diabetic eye screening vary year by year. My own optician is scathing about them, saying that a) he's seen no damage at all and b) the people reading the scans are not as well trained as he is. The diabetes team gave me the scare story (because don't they love those) that diabetic retinopathy is progressive and irreversible. The way that I keep getting positive and negative results, and the reassurance from my own optician, doesn't seem to back that up

 

[Mrs Redboots]

The results of my diabetic eye screening vary year by year. My own optician is scathing about them, saying that a) he's seen no damage at all and b) the people reading the scans are not as well trained as he is. The diabetes team gave me the scare story (because don't they love those) that diabetic retinopathy is progressive and irreversible. The way that I keep getting positive and negative results, and the reassurance from my own optician, doesn't seem to back that up

Yes, and they never seem to agree on how to do the scan. Some people just take a couple of photos (and will turn the flash down at your request, although one refused point-blank and, I think, turned it up to its fullest, which was most unpleasant); others take half a dozen. On one infamous occasion, the technician came rushing after me and said it hadn't saved properly and was all to do again, and she was one that took at least a dozen photos of each eye.... Oh well, I'm as glad that they _do_ scan - better safe than sorry, after all, and I don't have to go back for another year. And after last summer and early autumn was pretty much a wash-out due to various eye operations and convalescence therefrom, I'm glad for a break!

Annual health check on Monday week - first I've had since being on the trial. Looking forward to the results of my blood tests!

 

[tioca]

I remember feeling absolutely gutted once I realised it must be the placebo, when it was really working for me. I will still be filling in questionaires for the duration fo the trial although I withdrew from the trial once I realised it was the placebo from the CGM results over several weeks.

Ditto. I personally think the trial was badly designed, for those of us who were given insight into what was possible and then had it taken away. I knew that this could happen when I started the trial, but I didn't expect to feel so good on the run-in drugs. I now feel much more dissatisfied that if I'd never tried it. I believe they could have run the trial in a way that didn't give us hope, then dashed our hopes by taking away a medication that many of us have no means of accessing again.

I am still battling on all fronts to try to get it prescribed on the NHS, but if that fails I'm on online pharmacy waitlists for when it's approved for weight loss in a few week's time (under a different name). However I'm still unsure, even if I can afford it, who will provide overall care for my T2D if I get it privately. I doubt the useless "diabetes specialists" at my GP practice will offer any support.

Ultimately, my mental and physical health comes first. I've seen what can be achieved and I'm angry at how those of us on the placebo have been treated. Perhaps I should have known better. I was also part of a breast cancer screening trial. I was judged to be at high risk based on their scoring system and was given annual mammograms. The trial has ended and there is no path on the NHS for annul mammograms (despite a strong family history) because my local authority uses a different risk score to the clinical trial and to other health authorities. So all I've been left with is the knowledge I'm deemed high risk by a more advanced scoring system, but with no ongoing support. I question the ethics of these trials where you're given knowledge but no support.

 

[Mrs Redboots]

I am still battling on all fronts to try to get it prescribed on the NHS, but if that fails I'm on online pharmacy waitlists for when it's approved for weight loss in a few week's time (under a different name). However I'm still unsure, even if I can afford it, who will provide overall care for my T2D if I get it privately. I doubt the useless "diabetes specialists" at my GP practice will offer any support.
.

Your local pharmacy may well offer support - mine does. I don't think the major chains do, but if you have a local pharmacy that's not part of a chain, or only a few branches, it's well worth enquiring. I do agree that this trial is poorly designed, as it's too obvious who is on the drug and who isn't!

 

[Mrs Redboots]

Frustration - they have published all the results of my tests earlier in the week except the one I really wanted to know, which was my HbAC1! I'll have to wait to speak to the doctor on Monday. Grrr. However, have officially lost 10kg over the past year (12 kg over the past 2 years), so I'll take that as a win for the oral semaglutide. All the same, could have done without a hypo before breakfast this morning - I suppose because of the heat.