Feeling Let Down

Hi,

I was on Rybelsus and doing very well on it - I started on 3mg and gradually, over 6 months titrated up to 14mg. My A1c went from 79 and it slipped all the way down to 51 - usual readings of between 6-8 - then the shortage happened! Diabetics could not get the meds they needed because of unscrupulous doctors prescribing off licence for weight loss. I am very intolerant to Metformin and Metformin SR. So, was given Lyxumia as an alternative - this made me so sick . Hence being put on Rybelsus. As an alternative when the shortage happened I was given Sitagliptin which was not helping much, so Jardiance was added to the mix. This worked and sugar levels began to fall again - then the thrush started. Absolutely horrendous! Spoke to Diabetic Nurse who advised to stop taking it for a few days until the thrush cleared up. Did this, back on it for less tan 2 weeks and the thrush was back . My life was bloody miserable, blood sugars creeping up, thrush causing great distress and generally feeling rubbish. Rang Docs surgery asked for a call back to discuss options, was basically told, there isn't any alternative and more or less just to suck it up buttercup. I would be added to the list for a new drug/alternative of a once per week injection (which isn't available yet) and no timescale given. I have never felt so let down as I did after that phone call. Ten days or more passed and I was really feeling awful - blood sugars constantly above 15 . Spoke to Docs again (GP) who really wasn't interested and palmed me off with a follow-up call from the DN. After 8 days, still no contact from DN - I eventually filled in an Online Consult form and some 15 days after a promised follow-up I am to have a phone call tomorrow from the Diabetic Nurse. I have since found out from my Pharmacist that Rybelsus is back in stock again - all doses available and in good stock - I am awaiting the fobbing off and excuses tomorrow about being re-prescribed. I am doing my part but being ignored by my healthcare professionals. I do not want my health to deteriorate so much that I cannot pull it back. Right now I am feeling so disheartened and failed by ignorance. Sorry for the long read, now my mental health is starting to suffer as I feel so rotten most of the time.

Rachox said:

Hi @JayDubbleU , I too am on Rybelsus, having previously been on Victoza (liraglutide) from the same group of meds. which became completely unavailable after Xmas. I read your post with my heart in my mouth with the bit about shortages of Rybelsus, but breathed a sigh of relief when you said your pharmacy says it’s now readily available. I dont see any good reason for your DN to refuse you having it represcribed as it suited you well and other meds you’ve tried cause you problems. Be strong and insist, it’s your body, your diabetes and you want what’s best for you. Let us know how you get on.

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Good Morning, Rachox

Thanks for your reply. I have been without Rybelsus since July 2023 when the shortages hit here. I noticed a steady decline in my blood readings from the removal - numbers did lower with the introduction of Jardiance - but the thrush is just too much. Fast forward to this morning, I have had a telephone consultation with my Diabetes Nurse and Rybelsus has been re-prescribed! (last two consultations have been with a different DN and I got the distinct feeling she quite frankly wasn't interested) So, YAY!!!!!!!!!!!! Starting back at 3mg for a month - 7mg sent for 4 weeks time and back on repeat dispensing! I am ecstatic! <does the happy dance>

I am hoping now to start getting my HbA1c back down again - I had got it down to 49 before the shortages, so now hoping to get to that level or below

Rachox said:

Yay! What a result! I’m so glad you now have the medication you are comfortable on, long may it last!

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I am ecstatic