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Mounjaro withdrawn

Disneyfan

Disneyfan

Well-Known Member
Messages
62
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I was diagnosed in 2012 and after 6 months low carbing and significant weight loss I was able to come off metformin and maintain a ‘normal’ hba1c for 8 years. (It was 38 in Feb 2020 and had been between 31 and 40 the entire 8 years) Lockdown I started to put on weight again and adding to that the stress of caring for/dealing with the death of both my parents my hba1c went up dramatically …43 2021, 53 2022, 81 in 2023 (at this point they tried me back on metformin and I really couldn’t tolerate it at all so they swapped me to linagliptin, when that didn’t work enough (73 in Sep 2023) they added dapaglifozin and I got it down to 62 (by this time both parents had died). I was offered mounjaro in September 2024, by October I was down to 45, and in March this year 41. I’ve had a phone call today saying they’re withdrawing it as my hba1c is so good (although it hasn’t been tested since March and I’m due my annual review next week). She was quite open that it is cost motivated… I’m terrified it will just rocket back up again and don’t know what to do … any advice? Self funding long term isn’t really an option. (By my scales I have lost around 20kg since being on mounjaro but haven’t lost any weight since March and am still technically obese BMI 30.3)
 
Hi @disney fan, it sounds like we have lived parallel lives! Initially on diagnosis I lost a shed load of weight and reduced my HbA1c to non diabetic levels, on Metformin and low carb diet. I then lost both my parents within 18 months of each other so am right there with you on the loss of control due to grief. I however just comfort ate fats so my HbA1cs stayed in the 30s but I put back on 3 stone. At my review in 2023 I was just below the BMI required for GLP 1 meds but was allowed to have them. I have since lost the weight again and more. At my review earlier this year it was suggested that I stop the meds, but I said as it was working I didn’t want to. I was allowed to continue. However I’m on Rybelsus, a tablet form of Semaglutide, it is around half the price of Mounjaro. I wonder if cost is all on your nurse’s mind then maybe she might consider Rybelsus for you. I do think that these financial decisions are very short sighted and have no consideration for the individual.
Let us know how you get on at your review.
 
Ah thanks for replying … and yes it does sounds very similar to me … I’d literally only spoken to her a month ago when she rang to say I wasn’t to take the sitagliptin (which they replaced linagliptin for due to cost) any more as the mounjaro was doing the same job … and said I was due a review and booked me in for a blood test. I’d not heard of Rybelsus so thank you for the heads up. I know i’m no longer getting the food noises suppression from Mounjaro (I was only ever on 5mg) but my intermittent finger prick tests suggest it’s still doing its job on my blood sugar. Like you said, seems very shortsighted
 
Disneyfan said:
Ah thanks for replying … and yes it does sounds very similar to me … I’d literally only spoken to her a month ago when she rang to say I wasn’t to take the sitagliptin (which they replaced linagliptin for due to cost) any more as the mounjaro was doing the same job … and said I was due a review and booked me in for a blood test. I’d not heard of Rybelsus so thank you for the heads up. I know i’m no longer getting the food noises suppression from Mounjaro (I was only ever on 5mg) but my intermittent finger prick tests suggest it’s still doing its job on my blood sugar. Like you said, seems very shortsighted
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Hi Disneyfan and all
I posted a similar story about my Mournjaro story today. I have a phone call with gp pharmacist next week and terrified they will remove it and put me on insulin which I will not take. I’m on 10mg of Mournjaro plus metformin and dapigflazon my last blood test was 49 which is really good for me. I really am in a panic. I suppose I should have really been on ozempic but it wasn’t available at the time. It states in website Mournjaro only for very obese with at least four health conditions now. Like you I would pay if I could. I need a good case to put forward if anyone has any suggestions.
Hugs to you and any1 in the same situation.
 
Rachox said:
Hi @disney fan, it sounds like we have lived parallel lives! Initially on diagnosis I lost a shed load of weight and reduced my HbA1c to non diabetic levels, on Metformin and low carb diet. I then lost both my parents within 18 months of each other so am right there with you on the loss of control due to grief. I however just comfort ate fats so my HbA1cs stayed in the 30s but I put back on 3 stone. At my review in 2023 I was just below the BMI required for GLP 1 meds but was allowed to have them. I have since lost the weight again and more. At my review earlier this year it was suggested that I stop the meds, but I said as it was working I didn’t want to. I was allowed to continue. However I’m on Rybelsus, a tablet form of Semaglutide, it is around half the price of Mounjaro. I wonder if cost is all on your nurse’s mind then maybe she might consider Rybelsus for you. I do think that these financial decisions are very short sighted and have no consideration for the individual.
Let us know how you get on at your review.
Click to expand...
Hi Rachox
Do you now if you can take rybelsus with kidney disease ? Thx
 
Dorano said:
Hi Rachox
Do you now if you can take rybelsus with kidney disease ? Thx
Click to expand...
According to a discussion I had with my DSN I think it’s on a case to case basis, I’m not on any of these type of drugs but did have quite a long chat about each one and rybelsus according to her can affect the kidneys
 
lovinglife said:
According to a discussion I had with my DSN I think it’s on a case to case basis, I’m not on any of these type of drugs but did have quite a long chat about each one and rybelsus according to her can affect the kidneys
Click to expand...
Thx for the reply Rachox, I prob won’t be offered that then. My kidney function was affected by covid and I now have to be careful with what I can take :(
 
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