Sarah Tee Posted March 10, 2023 Report Share Posted March 10, 2023 I’m going to be trying acarbose soon. Not sure whether it will help, and not looking forward to the GI side effects, but will give it my best shot. Has anyone had any success with it? My symptoms have a strong postprandial element, so we are trying to tackle symptoms from that angle. Next on the list is sandostatin (Octreotide). My specialist feels it is more likely to work than acarbose, but the downsides are potential gall baldder damage and the cost here in Australia. After that, the only thing left that we haven’t tried is atomoxetine (Strattera). Erythropoietin is a faint possibility. If none of those work, I will go back to watching and waiting for something rheumatological to show itself. If I get worse, e.g. bedbound, my specialist may be able to swing it for me to get albumin infusions at home. I have to get bowel surgery (unrelated) soon so no doubt that will keep me busy. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 10, 2023 Report Share Posted March 10, 2023 3 hours ago, Sarah Tee said: I’m going to be trying acarbose soon. Not sure whether it will help, and not looking forward to the GI side effects, but will give it my best shot. My Dr brought this drug up last year. He did mention the side effects. Not sure what exactly what the intent of the trial is but Metformin ER is rumoured to be tolerated a bit better. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 10, 2023 Author Report Share Posted March 10, 2023 @MikeO, the idea is to reduce or slow down carbohydrate absorption to possibly reduce postprandial symptoms. I think metformin lowers blood sugar, and my blood sugar is okay. The general treatment aim for me at the moment is to reduce the amount of blood rushing to the gut when I eat. Octreotide will do this directly but is going to be hard to organise, hence trying acarbose first. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 10, 2023 Report Share Posted March 10, 2023 33 minutes ago, Sarah Tee said: @MikeO, the idea is to reduce or slow down carbohydrate absorption to possibly reduce postprandial symptoms. I think metformin lowers blood sugar, and my blood sugar is okay. The general treatment aim for me at the moment is to reduce the amount of blood rushing to the gut when I eat. Octreotide will do this directly but is going to be hard to organise, hence trying acarbose first. Well pretty sure Metformin does not lower blood sugar (will not cause hypo) but does work on the absorption of carbs thru the GI as well. (blocker) Could be wrong but just throwing caution to the wind for you. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 11, 2023 Author Report Share Posted March 11, 2023 Maybe “lowers blood sugar” is an oversimplification, in that the Metformin doesn’t directly reduce blood glucose, but that is the outcome. Quote Metformin lowers blood glucose levels in 2 ways, by: reducing how much glucose is released from the liver, where it is stored helping the cells of your body to absorb more glucose from the bloodstream https://www.healthdirect.gov.au/metformin Quote most patients find that their HbA1c levels drop by as much as 1.5% on this medication https://hopkinsdiabetesinfo.org/medications-for-type-2-diabetes-metformin/ I’m not an expert though, because my blood glucose levels are normal. My specialist suspects overproduction of digestive chemicals, especially in response to carbohydrate intake, leading to excessive blood heading to the gut. It’s being studied at Venderbilt soon: https://clinicaltrials.gov/ct2/show/NCT05375968 Basically, my specialist is trying to reduce the amount and speed of carbohydrate absorption in order to stop excessive splanchnic dilator chemicals being released and drawing too much blood to my gut. At least, that’s my understanding of what he told me 🙂 Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 11, 2023 Report Share Posted March 11, 2023 7 hours ago, Sarah Tee said: Maybe “lowers blood sugar” is an oversimplification, in that the Metformin doesn’t directly reduce blood glucose, but that is the outcome. https://www.healthdirect.gov.au/metformin https://hopkinsdiabetesinfo.org/medications-for-type-2-diabetes-metformin/ I’m not an expert though, because my blood glucose levels are normal. My specialist suspects overproduction of digestive chemicals, especially in response to carbohydrate intake, leading to excessive blood heading to the gut. It’s being studied at Venderbilt soon: https://clinicaltrials.gov/ct2/show/NCT05375968 Basically, my specialist is trying to reduce the amount and speed of carbohydrate absorption in order to stop excessive splanchnic dilator chemicals being released and drawing too much blood to my gut. At least, that’s my understanding of what he told me 🙂 Sorry I was thinking more in terms of glucose with Metformin, helps the amount of glucose that our bodies absorb from the foods we eat. Your post did jog my memory as to why i had a discussion around Acarbose with my Doc to begin with. Was for a possible treatment for my postprandial hypotension. I did defer the offer at the time (bad timing anyways) and choose to control it thru diet changes. Sure this was the right choice seeing we figured out that i have diabetes. Please keep us posted as to how this works for you. Good Luck and best wishes! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 17, 2023 Author Report Share Posted March 17, 2023 @MikeO, thank you. I am glad you have been able to take the diet approach. I have tried to reduce my postprandial symptoms by lowering CH intake, but my situation is complicated by having to follow a competing diet (low residue) related to bowel surgery I had years ago. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 17, 2023 Author Report Share Posted March 17, 2023 Just for anyone reading this in the future who is trying acarbose – do take it slowly. I suggest trying one dose with one meal, then waiting 48 hours to see what happens. Also, start with a low dose, maybe lower than your doctor suggests. I just had an unpleasant couple of days from not following my own instincts. Nothing life threatening, but when you are already ill with dysautonomia, you can do without an extra dose of unpleasantness (diarrhoea, bad taste in mouth, couldn’t sleep, acid feeling in stomach, slight abdominal pain, headache – maybe from sleep disruption). Having said that, it may be that this is going to help me. One day is too soon to say, but it was looking promising until the side effects kicked in at bedtime. Will report back after I take a few days to recover and try again. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 30, 2023 Author Report Share Posted March 30, 2023 It took me two weeks to recover! I am now trying a small dose of 12.5mg at breakfast. When I first got symptoms 18 years ago, it was after breakfast. (Used to be for only half an hour each day … it got worse year on year until now, when I am symptomatic until about midnight each day.) Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 30, 2023 Report Share Posted March 30, 2023 2 hours ago, Sarah Tee said: It took me two weeks to recover! I am now trying a small dose of 12.5mg at breakfast. When I first got symptoms 18 years ago, it was after breakfast. (Used to be for only half an hour each day … it got worse year on year until now, when I am symptomatic until about midnight each day.) Glad to hear you are still trying different approaches. Keep after it. Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 1, 2023 Report Share Posted April 1, 2023 @Sarah Tee How is your trial of acarbose coming along? Just curious. Quote Link to comment Share on other sites More sharing options...
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