Cycloset?

Type 2
#1

So I went to see my endocrinologist today. (Have I mentioned that I love him?)

He agreed that there's no way I should stay on met with the side effects I was having. At first he tried to tell me that I don't need to be on meds because my A1c is so low, and that as long as the numbers aren't bothering me, I shouldn't be worried about complications.

But then I reminded him that feeling sick all the time was the REASON why I'd been on the met in the first place, and he agreed to put me on something else.

After some discussion, he decided that I should try Cycloset. He's actually quite excited about it. He said that if it works for people with IR, then it works really, really well.

He claims the side effects are minimal (despite the package insert, which he knows I'm going to read), but that I should start it on a weekend because it can cause mild nausea when it's started.

I'm supposed to start with one, and then go up to two when one doesn't make me nauseous anymore. Then I should stay on it for a couple of weeks and call him to let him know how I'm doing with it.

Has anyone here ever been on this drug? I've never even heard of it, which makes me a little nervous. What can I expect? Did anyone here have side effects from it?

(BTW, he spent more than a half hour with me. He went over all my questions about ALL of my medical issues, and he said that I have IR, but that it's extremely genetic in my case. He also showed me the new OmniPod demo he had and the Accu-chek Spirit because I was interested. The new Omnipod is TINY.)

#2

Glad you had a god visit. I hope the new med works for you. Keep us posted.

#3

I tried Cycloset several years ago and slowly worked my way up to the recommended dose. I'm thinking that was like 6 tabs? Anyway, once I got up to that dose it gave ma a horrible taste in my mouth that I could not stand. Also, my numbers were not significantly improved enough to justify dealing with it. Insulin was my next step and life is sooooo much better:)

#4

Forget the cycloset. Go straight to the Omnipod. You'll never regret it.

#5

From Wikipedia... interesting that this is chiefly a drug that impacts brain neurotransmitters, but also seems to lower BG 'though no one knows how:

Bromocriptine (INN; trade names Parlodel, Cycloset), an ergoline derivative, is a dopamine agonist that is used in the treatment of pituitary tumors, Parkinson's disease (PD), hyperprolactinaemia, neuroleptic malignant syndrome, and type 2 diabetes.

[...]

Amenorrhea, female infertility, galactorrhea, hypogonadism, and acromegaly may all be caused by pituitary problems, such as hyperprolactinaemia, and therefore, these problems may be treated with this drug. Bromocriptine has completely treated gestational macromastia eliminating the need for reduction surgery, in a recent case.[1]Since the late 1980s it has been used, off-label, to reduce the symptoms of cocaine withdrawal.[2][3] In 2009, bromocriptine mesylate was approved by the FDA for treatment of type 2 diabetes under the trade name Cycloset (VeroScience). It is currently unknown how this drug improves glycemic control, but it has been shown to reduce HbA1c by ~0.5 percentage points.[4]

Pharmacology

Bromocriptine is a potent agonist at dopamine D2 receptors[5] and various serotonin receptors. It also inhibits the release of glutamate, by reversing the glutamate GLT1 transporter.[6]

#6

They think that low dopamine levels in the morning cause high BG. They don't know why. But it's used in much, much higher doses for those conditions than it is for diabetes.

I stared on one pill, next week I'll move up to two. Then I get to be on it for a few weeks and I'll tell him how it's going.

He knows how I feel about the other diabetes meds, so we'll see how this goes. Honestly, I'm sick of all the orals and I'm ready for insulin. I just don't think he's ready for me to be on insulin. If this doesn't work out, I'm begging for insulin.

#7

I would so much rather be on insulin. I think that is why I'm hoping to be diagnosed LADA rather than T2. My last A1C was 5.8 so no one ever want to put me on insulin since I'm so well controlled.

#8

I didn't even bother to bring up insulin with my endo at this appt because when I brought up how I would never go on a sulonylurea, he basically said I'd die of low BG because they're too strong. (My last A1c was in the low 5's).

Well, my A1c is so low because if I'm spiking that badly, I don't eat any carbs. That doesn't mean that I wouldn't have an A1c of 8 or above if I weren't on meds and were eating like a normal person.

Isn't it sad that we'd rather be LADA than T2 JUST for insulin? (Okay, the stimga and sterotyping is totally part of it, but for me the insulin is more.) I'm doing a paper about the inadequate diagnosis, training, and treatment for T2 this semester. It's just ridiculous!

#9

I'm just curious, I've seen many people over the years here mention that they have a good A1c because they hardly eat and if they ate "normally" they would have a high one, and that they wish they were really on insulin ... Isn't it possible that the good A1c actually make your doctors think your situation (diabetes-wise) is much better than it actually is, since they don't know that you're not eating normally, and therefore prevent them from recommending insulin? Maybe if you did eat "normally" for a few months and came back with a high A1c and brought up insulin, there wouldn't be a problem? I've never been in this situation so I'm really just asking out of curiosity, as I've seen this come up a fair bit in discussions.

#10

I was on several oral meds and carb restriction. when it finally got to where I could hardly tolerate any carbs and my numbers would still be high was when I gave up. Time for insulin. So much better now. I'm pumping and can adjust for what I eat although I still limit my carbs to 20-30 each meal

#11

There are many problems here.

The first, obviously, is the few months I would have to give up on and sleep all the time. That is, while I'm in college, while I'm doing laundry, while I'm doing dishes, and cooking, and trying to exercise. When I'm over 160, I Do. Not. Function. Though that probably gets better over time, I still wouldn't function well for those months.

But it wouldn't be those three months. Most endos will try a combination of meds before putting a patient on insulin. And that's multiple office visits, so we're talking more than a year here.

Endocrinologists should be aware that if a patient is complaining about BGs over 160 repeatedly after eating and that their A1c is normal, then they're probably cutting down on eating. I've told my endo that I don't eat carbs when I get high repeatedly. He knows that. He also thinks he can control it on meds first--possibly forever.

When I first went on met, he asked me what I thought my A1c was going to be. I told him that it wouldn't be high at all because I hadn't eaten carbs in four months.

At the next appt, he asked me the same q and I told him that I spike, but that the met brings it down relatively fast. He spouted off some chem stuff (he knew I'd understand--he doesn't speak to his other patients the way he speaks to me) and smiled when he saw my shocked look and said "yeah, I still remember some of biochem--what was important, anyway". (Who expects docs to remember basic biochem? Basically, your BG has to be at a certain concentration for a certain amount of time before the sugar will bind to the red blood cells.)

Also, lets not forget the damage I'd do to my body. At some point, I'd either poison my beta cells or burn them out (or both), which would be a significant amount of permanent damage, only making the switch to insulin harder.

Also, many endos won't put people on insulin until their A1c is so high that it's practically unthinkable. We aren't talking over 7 here, we're talking over 10. And then you're non-compliant because you could've done so much better with diet and exercise if only you were motivated (something we all know is easier said than done and isn't always true)...and I'd hesitate to put a patient who doesn't work hard enough on insulin, too.

#12

I never thought of the beta cell thing. That would definitely be an enormous negative, as would being tired all the time. Being Type 1, I forget that high blood sugars does bad things to living beta cells.

I've noticed that, as an adult, I get extremely tired when my blood sugar is over 250 or so. As in, if I'm at work or out somewhere else I struggle to stay awake, and if I'm at home I go have a nap even if I'm in the middle of doing something important. This, more than anything (I can deal with being thirsty) is what makes me want to avoid highs. I don't remember being so tired with highs when I was younger. I sometimes wish I felt worse when I was at a lower level, because it would give me an earlier warning. Right now I can cruise through an entire day at 200 and not really notice (except that I test, of course). But, yeah, if you feel like that at 160, it definitely wouldn't be possible to live with.

I do know what you say about length of time and A1c for Type 2s is usually true (and wrong). But it sounds like you have a pretty good relationship with your endocrinologist and a good knowledge of diabetes, etc. It's too bad (due to the problems mentioned above) that you couldn't ease off a bit, have your A1c jump from 5.5 (or whatever it is) to 7.5, go in and refuse all other medications, and pick up some insulin.

Definitely a frustrating situation.

#13

If I refused all other meds, he'd probably say that 7.5 isn't that high and that he'd let me go on for a while.

Last week, I was in the 150's after dinner...I nearly fell asleep on my textbook. (I don't know how much of that was history and how much was BG.) A couple of weeks ago, I went for a run rather than deal with the high and the sleepiness.

My endo knows that I know a lot about diabetes. (Hence the OmniPod and Accu-Chek Spirit.) He knows that I'd be a good insulin patient. But I think he's worried that I'd be more insulin-sensitive than an insulin pen can account for (so much for insulin resistance). Or maybe he just wants to make things simpler for me while he still can.

I didn't bring up insulin this time, but if the Cycloset doesn't work and he can't pull another magical pill with no side effects out of his sleeve, I'm begging for it.

#14

Exercise is a great way to bring down high blood sugar (as long as it's not too high), but of course it's one of the hardest times to exercise. A few times when I've been high I've gone and exercised for 30 minutes before doing a correction, and I end up using a fraction of the insulin I would have needed if I hadn't exercised. But I find exercise feels HORRIBLE when I am running high. Swimming (my sport of choice) while high feels almost torturous, and I imagine running is the same.

It's probably true that you would have a hard time with doses given that your blood sugar isn't very high (I mean, most doctors are used to starting people on insulin who have BGs of 300-400 or higher!). But if you are insulin resistant, that would negate things a bit. You can also dilute insulin (young kids do this).

Good luck with everything. I hope this medication works, or if it doesn't, that your doctor is open to insulin. Maybe even just a few units of basal insulin would take enough stress off your beta cells that it would help your blood sugar and allow you to eat without spiking.

#15

The night I ran so I wouldn't be high I hadn't been high yet. But I'd been high after dinner every night that week, so I expected to be.

Call me crazy, but I still think I'm too young for insulin resistance. (Denial, maybe?)

And wouldn't basal insulin cause more lows than bolus? If I were on basal, I'd be guaranteed to have issues with running (and walking to school, just because, etc), but if I'm only doing bolus, I'll only have lows during that 3-hour window. (I know, "only".) Also, I'd be much less likely to snack all the time if I were on bolus. :-)

#16

I find basal causes fewer lows than highs, and the lows it does cause are more gentle rather than rapid crashing. But this may be completely different for someone still producing a lot of insulin.

Did you ever get tested for MODY (I think you posted a while ago talking about that). To me, that would make way more sense than Type 2, and I don't think it involves any insulin resistance. I'm not sure there's such a thing as "too young" for insulin resistance, though. (Although I know how you feel—I feel too young for arthritis!) When I was student teaching back in 2006 a kid at my school (though not in my class) was diagnosed with Type 2 ... at the age of 9. That's the same age I was diagnosed with Type 1, and at the time I couldn't believe it, but I've since read articles saying it's not uncommon for kids to get Type 2

#17

I didn't know that about basal. Thank you!

I never got tested for MODY. He based his diagnosis of IR off a couple of high c-peptides I had about a year ago.

The thing about kids getting T2 is that, by definition, they're obese. I've never heard of a thin T2 child. (Maybe they're misdiagnosed as T1? I doubt it, though.) And I'd be considered a thin T2--but at what age does that happen? At what age does obesity stop being a defining characteristic of T2?

#18

Guitarnut is right. It will take being at least a 7.0 on my A1C or maybe even more. At about 160-180 I start feeling crummy. I too am going to school and normally work full time. I don't have time to feel like crap.

My new endo is very good about saying that my BG isn't my fault since I obviously work at diet and exercise but as with most drs. she doesn't seem to think I need different meds. She told me that since the amaryl helps me I obviously still make insulin so I'm fine.

Younger, thin T2s are the minority and I don't think drs. know how to treat us.

#19

Since I'm pre-med and overall pretty well-functioning despite my other health issues, my endo knows I can't afford to feel like crap. When I told him I can't take the Met anymore, he asked why I need to be on it in the first place, since my A1c is so good. I reminded him about how I spike to over 200 with almost no carbs and just stay there. Then he remembered and didn't question my need for meds again during the appt.

My endo insists my BG isn't my fault. It feels nice knowing that, but I still question the likelihood of young, thin T2s. There is very little data that suggests that younger people get T2 without being overweight.

My endo said that I have sufficient insulin because my c-peptide is always normal or high. Tell me, then, how I get highs? Regardless of insulin resistance, BG shouldn't get high unless there's some level of insulin insufficiency. And, while we're at it, explain why, on days when I was already high once, I'm much more likely to be high again? I may still make insulin, but I obviously don't make enough.

Also, if he tried to put me on Amaryl, I'd insist on insulin. Why make my body make more insulin all the time when all I need it for is meals? If I were you, I'd bring in a paper from any one of the reputable medical journals about beta cell burnout from sulfonylureas. People who take them go on insulin in an average of 7 years (or something like that).

#20

Oops, I should have said basal causes fewer lows than bolus. But as I said, this may be different for other people, especially those still making insulin, which I have no experience with (minus a three-month honeymoon when I was using R and NPH). In general, I have more problems with highs than I do with lows, although lately with better control I've been getting many more lows than I used to.