Semiglutide trial Ascend

[daisydoole]

I started my trial 10.10.25, side affects not too bad. In the first 3 months I lost 14 pounds but more importantly my fasting glucose level came down to in the 5s so very glad. However 26 days ago I started the full trial. Weight loss stopped almost immediately and my fasting glucose level has gone up to 8.8 today. So i guess I am on the placebo. My food noise is back too. I will give it another month and see if this changes, but my health is more important than this trial and I will remove myself from it if needed.

Anyone else have comments on the full trial, most of the comments I see are about the run-in.

 

[lovinglife]

Hi @daisydoole & welcome to the forum
Don’t know if you’ve seen this thread on the ascendplus trial

S

Thread 'Anyone on the Ascend Plus trial?'

Oct 3, 2023

Just thought aid start a discussion here for anyone on the Ascend Plus trial by Oxford University.

Started my “Run In” phase yesterday and so far so good. No side affects other than fatigue. How are other folks doing?

• Sally66
• Replies: 500
• Forum: Diabetes Discussions

 

[AllieRainbow]

I started my trial 10.10.25, side affects not too bad. In the first 3 months I lost 14 pounds but more importantly my fasting glucose level came down to in the 5s so very glad. However 26 days ago I started the full trial. Weight loss stopped almost immediately and my fasting glucose level has gone up to 8.8 today. So i guess I am on the placebo. My food noise is back too. I will give it another month and see if this changes, but my health is more important than this trial and I will remove myself from it if needed.

Anyone else have comments on the full trial, most of the comments I see are about the run-in.

I realised I was on the placebo, and decided to withdraw from the trial and my GP practice agreed to prescribe the Rybelsus for me after seeing the effect the semaglutide had on my BG and other issues. I would recommend talking to your GP surgery about this and seeing if they can do anything for you.

There are a lot of posts from people at various stages of the run in and trial over on the Ascend Plus thread mentioned above, so you will be able to find out more from people who think they are on the real stuff.

 

[daisydoole]

I realised I was on the placebo, and decided to withdraw from the trial and my GP practice agreed to prescribe the Rybelsus for me after seeing the effect the semaglutide had on my BG and other issues. I would recommend talking to your GP surgery about this and seeing if they can do anything for you.

There are a lot of posts from people at various stages of the run in and trial over on the Ascend Plus thread mentioned above, so you will be able to find out more from people who think they are the real stuff.

Thank you will do

I realised I was on the placebo, and decided to withdraw from the trial and my GP practice agreed to prescribe the Rybelsus for me after seeing the effect the semaglutide had on my BG and other issues. I would recommend talking to your GP surgery about this and seeing if they can do anything for you.

There are a lot of posts from people at various stages of the run in and trial over on the Ascend Plus thread mentioned above, so you will be able to find out more from people who think they are the real stuff.

Thank you

 

[tioca]

I did well on the run-in. I lost a few kilos in a slow way, my glucose control was excellent (99% in range according to my libre sensor) and no noticeable side effects. There was a bit less food noise and I was still enjoying food. I'm now 30 days into the randomised trial. My sensor says I'm 84% in range, my weight is slowly creeping back up and I'm eating more. I guess I'm on the placebo. However I had a bout of pneumonia in the past few weeks (after I ended the run-in) which raised my glucose for a while, so although I'm 99.9% certain I'm on the placebo I may struggle to prove it.

My A1C was tested this week, 28 days after I ended the run-in, and showed a drop from 62 to 56 which doesn't really demonstrate how well I was able to manage my glucose when on the real meds. The pneumonia may have slightly skewed my A1C results.

I really want to get it prescribed, because it was so nice not to have to worry about every meal and it lifted the diabetes anxiety that hangs over me. Can I ask, what evidence did you show your GP to get them to agree to it? I wonder if improved mental health would influence them?

 

[AllieRainbow]

I did well on the run-in. I lost a few kilos in a slow way, my glucose control was excellent (99% in range according to my libre sensor) and no noticeable side effects. There was a bit less food noise and I was still enjoying food. I'm now 30 days into the randomised trial. My sensor says I'm 84% in range, my weight is slowly creeping back up and I'm eating more. I guess I'm on the placebo. However I had a bout of pneumonia in the past few weeks (after I ended the run-in) which raised my glucose for a while, so although I'm 99.9% certain I'm on the placebo I may struggle to prove it.

My A1C was tested this week, 28 days after I ended the run-in, and showed a drop from 62 to 56 which doesn't really demonstrate how well I was able to manage my glucose when on the real meds. The pneumonia may have slightly skewed my A1C results.

I really want to get it prescribed, because it was so nice not to have to worry about every meal and it lifted the diabetes anxiety that hangs over me. Can I ask, what evidence did you show your GP to get them to agree to it? I wonder if improved mental health would influence them?

I used a CGM and printed off the reports week by week. I was, able to show how the run in period and then the placebo changed the blood glucose readings, in conjunction with lifestyle changes, and it clearly showed a difference in results which correlated with the drug. I would suggest anything you could use at all would be helpful. I also got the HbA1c results after 3 months on the prescribed Rybelsus this week and it had gone down to 40 from 81 - see my signature. My clinical practitioner was so excited she phoned me up to tell me as soon as she saw the results. It has also really improved my fatty liver to normal, which was another argument I used in the consultation to get it prescribed.

 

[tioca]

I used a CGM and printed off the reports week by week. I was, able to show how the run in period and then the placebo changed the blood glucose readings, in conjunction with lifestyle changes, and it clearly showed a difference in results which correlated with the drug. I would suggest anything you could use at all would be helpful. I also got the Hba1c results after 3 months on the prescribed Rybelsus this week and it had gone down to 40 from 81 see my signature. My clinical practitioner was so excited she phoned me up to tell me as soon as she saw the results. It has also really improved my fatty liver to normal, which was, another argument I used in the consultation to get it prescribed.

Thank you for that. Unfortunately my GP surgery (nurse + GP) were not excited about the benefits, despite the data, and won't prescribe it. They also said, despite the huge changes in my data since I went onto the placebo, that I can't prove I'm on the placebo so they can't accept me saying so.

I feel that, in Cambridgeshire, they seem terrified of prescribing something they may be criticised for. The GP I saw today admitted as such - that in other areas there may well be more GPs prescribing meds against NHS advice.

I fought for 3 years to get my sensors funded (for idiopathic hypoglycemia) and even then it needed the senior GP at the practice to decide the risk was worth it (even with a consultant endocrinologist letter) because she was just about to retire and could avoid a reprimand.

I think my GPs seem sympathetic, face-to-face, but will do anything to avoid trouble. And they've hinted that even if they prescribe them, a central body will cancel the prescription.

Maybe I'm being gaslit.

 

[AllieRainbow]

Thank you for that. Unfortunately my GP surgery (nurse + GP) were not excited about the benefits, despite the data, and won't prescribe it. They also said, despite the huge changes in my data since I went onto the placebo, that I can't prove I'm on the placebo so they can't accept me saying so.

I feel that, in Cambridgeshire, they seem terrified of prescribing something they may be criticised for. The GP I saw today admitted as such - that in other areas there may well be more GPs prescribing meds against NHS advice.

I fought for 3 years to get my sensors funded (for idiopathic hypoglycemia) and even then it needed the senior GP at the practice to decide the risk was worth it (even with a consultant endocrinologist letter) because she was just about to retire and could avoid a reprimand.

I think my GPs seem sympathetic, face-to-face, but will do anything to avoid trouble. And they've hinted that even if they prescribe them, a central body will cancel the prescription.

Maybe I'm being gaslit.

That is so disappointing. It seems ridiculous that they can't see what a difference it could make to you. It is hard enough with diabetes without having to fight every inch of the way for treatment.

 

[MrsBezzer]

Hi @tioca and @AllieRainbow . I started my trial on 1st Jan and during the three months run-in period I lost the “last stone” that I had been struggling to shift for twenty years. I was 59 and slightly overweight with reasonably well controlled type 2. My CGM immediately went down to mostly in the 5s compared to mostly in 7s. I kept 100% in range for that whole time with very little effort and the food noise completely disappeared. Previously I had had to follow a ridiculously low carb and fairly low calorie diet (FAST800 style) just to keep sugars down and to stop putting weight on. Constant battle for years and psychologically exhausting and really depressing because I have always been active and no amount of exercise helped…. These drugs just took all that away and gave me my pre-menopause body back! I am now just 60, 10st 7lb, BMI 24, HbA1c 44. This was totally worth it.. side effects experienced were mild nausea and unbelievable fatigue which I believe would have worn off…. However now I’m on the randomised phase (7mg by negotiation) and I think it’s definitely the placebo. I’m feeling hungry again and my CGM more elevated. Whilst I don’t want to lose any more weight I really enjoyed the respite from thinking about meal plans and the sense of constant deprivation in order to control the diabetes. On the run in drugs I continued my normal low carb diet but felt able to eat the odd piece of brown toast or half a baked potato occasionally without worrying that I would put a pound on the scales and spike my sugars….it wasn’t just less hunger it really felt like I was metabolising differently and it was soooo liberating. Going to ask my GP to prescribe Rybelsus but given my current stats I think it’s unlikely although I don’t think the 1000g Metformin I’m on is doing anything for me. The difference for my well being on small dose of semaglutide was remarkable. Even just 6 months more would be amazing to see if the fatigue wears off. Seeing diabetic nurse next week to discuss.

 

[MrsBezzer]

Thank you for that. Unfortunately my GP surgery (nurse + GP) were not excited about the benefits, despite the data, and won't prescribe it. They also said, despite the huge changes in my data since I went onto the placebo, that I can't prove I'm on the placebo so they can't accept me saying so.

I feel that, in Cambridgeshire, they seem terrified of prescribing something they may be criticised for. The GP I saw today admitted as such - that in other areas there may well be more GPs prescribing meds against NHS advice.

I fought for 3 years to get my sensors funded (for idiopathic hypoglycemia) and even then it needed the senior GP at the practice to decide the risk was worth it (even with a consultant endocrinologist letter) because she was just about to retire and could avoid a reprimand.

I think my GPs seem sympathetic, face-to-face, but will do anything to avoid trouble. And they've hinted that even if they prescribe them, a central body will cancel the prescription.

Maybe I'm being gaslit.

@tioca
I’m so sorry your GP isn’t being cooperative… totally empathise with your situation. Surely you could just stop the trial anyway if they would prescribe this drug for you? So shortsighted not to take your overall wellbeing into consideration. I’m sure it’s all about costs not clinical factors. Metformin is cheap, but in my case there’s nothing to suggest it’s doing anything for me… the only thing that kept my sugars in check before semaglutide was me cutting out practically all carbs and constantly worrying about my weight and feeling like a stranger in my own body…. Was slim and fit before my forties and early menopause. Being diagnosed with diabetes at 52 was a huge shock. You’re correct that mental health should be a factor in prescribing the right drug for each individual.

 

[Sally66]

I started my trial 10.10.25, side affects not too bad. In the first 3 months I lost 14 pounds but more importantly my fasting glucose level came down to in the 5s so very glad. However 26 days ago I started the full trial. Weight loss stopped almost immediately and my fasting glucose level has gone up to 8.8 today. So i guess I am on the placebo. My food noise is back too. I will give it another month and see if this changes, but my health is more important than this trial and I will remove myself from it if needed.

Anyone else have comments on the full trial, most of the comments I see are about the run-in.

Hi Daisy. Very similar happened to me in 2023/24. I too suspected I was on the placebo. I tried to get my GP practice to see just how effective the semaglutide had been at lowering my blood sugar levels not just helping to lose weight. Diet and exercise for me so far with weight loss but then I started to gain again despite maintaining the same low carb diet and daily exercise. I came off the trial to go onto Mounjaro through my pharmacy paying privately. The benefits to every aspect of my well being has been astonishing. Sadly, after 9 months my money has run out and I can’t afford it now.

Benefits on it included: painful joints stopped, immunity improved (haven’t had a single cold over winter season), mood enhanced, energy levels the best ever, fasting bloods in the 5s and of course weight loss. Now I’m off I’m in constant pain with my joints, depressed, weight gain has occurred and I’m eating even less and exercising more.

The medical profession needs to look at Semaglutide and the equivalent drugs like tirzepatide (Mounjaro) for treating Type 2 diabetes. They need to start to recognise this isn’t a drug just for treating obesity. It was created to treat people like you and its only available to those who an afford it. This is wrong.

 

[AllieRainbow]

Hi Daisy. Very similar happened to me in 2023/24. I too suspected I was on the placebo. I tried to get my GP practice to see just how effective the semaglutide had been at lowering my blood sugar levels not just helping to lose weight. Diet and exercise for me so far with weight loss but then I started to gain again despite maintaining the same low carb diet and daily exercise. I came off the trial to go onto Mounjaro through my pharmacy paying privately. The benefits to every aspect of my well being has been astonishing. Sadly, after 9 months my money has run out and I can’t afford it now.

Benefits on it included: painful joints stopped, immunity improved (haven’t had a single cold over winter season), mood enhanced, energy levels the best ever, fasting bloods in the 5s and of course weight loss. Now I’m off I’m in constant pain with my joints, depressed, weight gain has occurred and I’m eating even less and exercising more.

The medical profession needs to look at Semaglutide and the equivalent drugs like tirzepatide (Mounjaro) for treating Type 2 diabetes. They need to start to recognise this isn’t a drug just for treating obesity. It was created to treat people like you and its only available to those who an afford it. This is wrong.

You are so right. I have always been pretty resistant to taking drugs of any kind, and had to really consider whether the trial was worth doing. I was worried about the potential side effects as I had terrible issues with taking Metformin and the thought of those issues again was enough to put me off at first. I did look into things for a good while, looking at the data online regarding medical studies and thought it was really worth a shot as my HbA1c was appalling at 121.

I am very glad I decided to go on the trial and relieved that I was lucky to have a supporting practitioner when I realise that I was on the placebo. It is really disheartening to see how people are treated differently depending on area and local rules as the Rybelsus has definitely made a huge difference to me in terms of helping me stick to lifestyle changes, and also reversing my fatty liver and seeming to really normalise the way I respond to blood sugar.

I agree that everyone should have the opportunity to try this and see if it works for them - my practitioner was so shocked by my first HbA1c 3 months after she agreed to prescribe it that she phoned up to tell me my results - 40 (down from 81), and agreed to keep me on it. This was a result of a combination of low carb, exercise, and the semaglutide, plus using CGM data to work on portion size and timing of meals, and see what effect different foods and other things had on me.

I also had to weigh up whether I could afford to go private for this if she had not agreed to prescribe, as I felt it made a noticable difference, but as a carer on a fixed income I was very grateful that it was prescribed via the NHS. I realised that with a fixed income, although the Rybelsus really helped a lot, a CGM was more cost effective for long term control, as it helped me to change my diet and lifestyle to lower the HbA1c. I'm fortunate to be able to use both a CGM and the Rybelsus at the moment.

I realise I would be in a very different position without having the support of my GP practice in this. It is definitely a postcode lottery.

Healthcare should not be about pennypinching the money now - it will cost far more later if there are not suitable interventions and support for people earlier, and people deserve help and support in tackling their diabetes so they can remain productive members of society.