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Diabetes meds. What can you tolerate?

Discussion in 'Hypersensitivity and Intolerance Reactions' started by AndyPandy, Feb 5, 2018.

  1. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    I'm a skinny type 2 diabetic. Diagnosed 1997 but could have had it well before then.

    ME since 2011.

    Prior to ME I successfully controlled my diabetes with diet and exercise. With ME I was put on drugs. I had problems with Metformin - gut and energy - so I have been trying to manage without it with my endocrinologist's agreement.

    My gut and energy problems have improved (particularly the gut) but my BGLs are going up even on a low carb diet. I can't exercise and am fairly inactive due to ME.

    I suspect my endocrinologist is going to want me back on meds. I don't want to go on Metformin again.

    Just wondering what diabetes meds ME sufferers are tolerating (other than metformin)?

    I also have MCS so any drugs are tricky for me. I want to be able to research the side effects of a few options before my next appointment which is on 19 February.

    Thanks Andy
     
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  2. Valentijn

    Valentijn Not a moderator

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    Victoza works pretty well for me. I had about a week of constipation when starting it, but magnesium got things started up again :p I don't think I had side effects from gliclazide, it just left me too high at night and too low in the middle of the day.
     
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  3. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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  4. alex3619

    alex3619 Senior Member (Voting Rights)

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    I am taking nothing and have out of control diabetes. All this started five years ago when I was in hospital, a whole stack of blood results went nuts in the next year. This is an unfolding story and I will be slowly moving toward doing this, as and when I am able. I did move to a high protein diet but its not proving very successful. Even on very low carbs my blood sugar is nuts. For decades I had been able to control it well with careful eating. After breaking my ankle and leg surgery, plus a stack of drugs, things got out of control. This is also when my ferritin went skyrocketing.

    This week my focus is on a vascular specialist.

    There are drugs that limit how much glucose the liver can produce. I forget the names right now, I have a list somewhere. Those drugs may be my first choice in testing. Some of the drugs double down on ME pathology, I want to avoid those. The whole class Metformin is in are included in that.
     
  5. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Thanks @alex3619

    Sorry you are struggling with your diabetes.

    I hope the vascular specialist helps you.

    I will post about the outcome of my next appointment with the endocrinologist, including any drugs she recommends.
     
  6. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    I’ve been put on DIAMICRON MR (gliclazide) and it’s not going well.

    Day 1 and 2 15mg and some side effects. But no improvement in BGLs.

    Day 3 30mg. A range of horrible side effects and ME much worse. No improvement in BGLs.

    Does anyone else with diabetes and ME have any experience with this drug?

    I’m not taking it again.
     
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  7. Daisybell

    Daisybell Moderator Staff Member

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    Sorry to hear this. I don’t have any advice I’m afraid, just wanted to acknowledge and commiserate!
     
  8. alex3619

    alex3619 Senior Member (Voting Rights)

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    I was put on Metformin last year, again, and it was a total disaster this time. We seem to sometimes have issue not just with glucose but with many of the pathways manipulated by drugs.
     
  9. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    @alex3619

    This is actually worse for me than Metformin.
     
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  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    Yeah, but I had a foot almost die, go totally black, and lost most of my skin up to near my knee. It took four months for the ulcers to heal, and I will always have scars. I used to tolerate Metformin, our tolerance can vary. So the next time you try something like this it pays to be very cautious ... it may be we are sensitive to a range of drugs.
     
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  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Protein actually gets converted to sugar in the liver. A high protein diet therefore may not help as much as you need it to if you have high BGLs. Keto allows no more than 1g protein per 1kg of body weight for this reason.
     
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  12. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    That sounds horrible @alex3619

    Yes I’m sensitive to most drugs and supplements so I always start with a very low dose. I started with a quarter of a tablet, then a half a tablet but it’s already clear that DIAMICRON is not for me.
     
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  13. alex3619

    alex3619 Senior Member (Voting Rights)

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    I am alive due to similar caution. Some drugs I react dangerously to. I was not so cautious with Metformin because it was not the first time I was on it. We do have to be very careful with drugs.
     
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    I was put on gliclazide for a while, it ended up with me being called to the doctors, and eventually the hospital a few times for my non compliance, and eventually put on a different drug.

    It straight didn't work to control BG and caused extremely rapid weight gain, any more than 800kcal a day and I would put on weight, on a normalish diet this was several pounds a week, but even on 800kcal a day it didn't help my BG levels - which is damned odd as I would expect BG to drop with this level of intake without the drug.

    Other side effects? Not sure, nothing I can remember, put my finger on, I felt like crap, my ME was up and down, but when is it not, nothing I can definitely pin on the drug, unlike metformin where the side effects were obvious, time consuming and painful
     
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  15. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    So @Wonko if you don’t mind me asking, what are you taking to control your BGLs now and how is it going?
     
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    The one that works is Dapagliflozin (partially disables the kidneys re-uptake of BG), only problem with it if I get something else it has to be discontinued as I physically cannot drink enough water to compensate for it under those circumstances, when i tried around last Christmas I was on 12-15 liters a day and still dry as bone, a dry bone, it was unsustainable (I normally drink around 6 liters a day, more if it's hot, if I notice I've been drinking less than 5 liters it's time to do something about it - I have 3 3 liter bottles in the fridge, a shelf full, so it's fairly easy to keep track by how many times I need to refill them).

    I'm also, apparently, on alogliptin, a recent switch to my prescription that I wasn't informed of, only found out when I went to find out the info for you - as I've probably only been on them for a few days I can't comment on them, but the things I was on previously did virtually nothing BG wise.

    My BG is currently running between mid 7's and 11 ish, typically mid to high 8's in the morning, depending on what I've eaten, how much sleep I've achieved, etc. in the previous few days. Prior to the Dapagliflozin it rarely dropped below 11 and could quite often sit above 14 no matter what I did, even if I didn't eat (i.e. after a 2 day fast it could still be 16) - my BG could be quite contrary and behave in totally ridiculous ways. Obviously when mentioned to doctors this resulted in 'the look'.

    ETA - actually that isn't the only problem with Dapagliflozin, but at the risk of TMI, it cause a particular type of constipation, this can be problematic at times and sometimes the only solution I have found is to drop it for a day or 2, after having tried all of the conventional remedies for that problem.
     
    Last edited: Sep 19, 2018
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  17. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Thank you for sharing this @Wonko.
     
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  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thank you to those on this thread. @AndyPandy @Wonko @alex3619

    I am not diabetic but am heading in that direction, and after reading how difficult it is for you, I shall redouble my efforts to avoid it.
    Just as I got my blood test results there was publicity about the soup and shake diet that is to be offered on nhs. So I tried this reconstituted food, based around 6 or 800 cals. Ugh, never again. It was vile.

    Am now trying the 8 week blood sugar diet ( 800 cals) which looks more promising. I foresee real difficulty in losing the weight since like @Wonko i do not lose weight on 1200 cals without exercise. I cannot exercise and my step count is declining which is when the weight started to pile on.

    Anyway, thanks again. And good luck with your medications.
     
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  19. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Yes @Binkie4 it is really difficult managing diabetes and ME when you can’t exercise and the drugs are a problem.

    Good luck with your diet. I’ve read it can be quite successful.

    I found it helpful to educate myself about nutrition and diet, particularly the carb content of various foods and GI values.

    Best wishes Andy
     
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  20. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Is there anyone else on S4ME who is taking meds to control diabetes?

    I would be grateful to read about your experiences.

    Thanks Andy
     
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