FUDiabetes

And the weight came off

So after steadily gaining weight on Tresiba, I’ve now lost 10 pounds in the 4-5 months I’ve been off of it. I initially experienced a pretty dramatic loss of 7 pounds as soon as I went off Tresiba, but I think about 1-2 pounds of that was water weight that came back. I’ve lost around a pound a month since then which is about the pace I was gaining weight before. I can’t attribute this to extra exercise or diet because I’d made those changes months before I switched off Tresiba, and my hiking trips actually decrease during the summer because summers are hot and humid in my area = not my ideal hiking conditions.

Throughout my adult life, I’ve stayed within about a 5 pound range. When I hit the upper end of that range, I’d exercise a bit more and adjust my eating habits. The weight would inevitably drop to the middle range. If I was going through a stressful time, it tended to drop to the lower range but inevitably rose again.

Several changes occurred in my life last year: I started dating someone in March, I switched from Lantus to Tresiba early in the year, I started Afrezza a couple months after Tresiba. I think that each of these played a role in the initial weight gain, but when I went into the doctor last fall and found out that I weighed 10 pounds more than my usual upper limit, I was floored. I figured I’d gained some weight, but had no idea it was that much! I guess I should’ve been weighing myself more regularly.

I dropped birth control, I adjusted my diet, I increased the frequency of our weekend hiking trips- more for fun than weight loss, but I hoped it would help. The weight gain slowed, but didn’t stop. I was still gaining 1-2 pounds a month.

I was also encountering insulin resistance in the evening, and it seemed like my Tresiba doses were starting up really sluggishly. Any dose changes took forever to be visible. My daily basal dose had also increased by 5 units over the course of the year. I started on 500 mg/day of Metformin hoping that it would help with the insulin resistance in the evenings and potentially help stabilize my weight a bit too.

It definitely helped with the insulin resistance, but the weight gain didn’t stop. At my last appointment at the endos office in May, I weighed an additional 7 pounds more on top of the 10 I’d already gained- despite all of the changes I’d made in my life since finding out about the 10 pounds. I was incredibly frustrated and concerned that I was going to keep gaining weight. I would’ve happily settled for the weight stabilizing where it was. The weight gain felt completely out of my control.

I switched back to Lantus so that I could change my doses more easily. My doctor suggested that I might be treating more lows on Tresiba than Lantus and that could’ve been contributing to the weigh gain. I’m not at all convinced that that was occurring, but I’m adding it here anyway so that you can get the full picture.

I dropped Metformin about a month after going on Lantus because it didn’t seem necessary anymore. I had to increase my basal by a unit, but I remained responsive to insulin in the evenings.

From my perspective, it is blatantly obvious that Tresiba directly caused me both weight gain and insulin resistance. I know that YMMV and everybody is different, but I’m posting this for those people who have bodies that might react similar to Tresiba and may not have connected the dots. I wish I’d connected them sooner! I thought that insulin didn’t directly cause weight gain, rather if you’re in range more then you may end up gaining weight because you’re processing food in a healthier way. I don’t believe that anymore- not for Tresiba anyway. I didn’t have this problem on the pump with Humalog, and I haven’t had this problem with Lantus. If I start a new insulin again, I will be much more careful to track the way it impacts my weight.

In any case, I’m happy that I’m losing the weight now. I have 7 more pounds to go before I reach the upper end of my normal range. People have commented on my weight loss- it is visible. I feel like my body is back to normal where how I eat and exercise impacts my weight.

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I’m so happy you’re back on the right track!

I switched from Tresiba to Levemir a week ago (using untethered with pump). I prefer Levemir SO much more than Tresiba! Even just using it with the pump, it seems to work so much better for me, and I like that I can clearly see it wear off after 12-18 hours versus not really having any sense of what’s happening because the dose is so long-acting. If I were to go on MDI, Levemir is definitely what I’d use.

I’ve also finally started losing weight recently, which I am really happy about. I’m slightly nervous that it might just be due to some health issue (like thyroid or something like that), but I’m hopeful that it’s real weight loss happening as a result of my efforts. I had an exit appointment for the cardiac program I’ve been doing, and the doctor I saw there said that the body can sometimes take a loooong time to realize that it’s okay to start letting go of weight… For me, I’ve been working intensely at it for four months and it’s only been in the past couple weeks that I’ve seen any movement. But the doctor also said I’ll plateau at some point in the future, and when I do, I should come back to the program and they can help me. I was actually so happy to hear this. For people who are seriously overweight, the medical system so often offers no help whatsoever…this is the first time a doctor has ever told me to come back and they could help when I experience difficulty in the future.

I’d only been taking Tresiba for three months, but I’ll be interested to see if perhaps that was interfering with my efforts and preventing weight loss from happening.

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Congratulations!!! I’m glad your hard work is starting to pay off.

Not seeing results is what had me so frustrated! I implemented all these changes around October, and after 7-8 months, I only had 7 more pounds of weight gain to show for it.

Comparably, the weight loss was dramatic after going off Tresiba. I lost 7 pounds within the space of a few weeks and kept off 5 of that permanently- after having tried for so long. Seeing the slow reverse since then makes me really happy. I’m very content with slowly losing the weight over time. I suppose there’s a decent chance I’ll plateau before I hit my ideal range, but I’m crossing my fingers :crossed_fingers::crossed_fingers:

Yeah! I’m not sure if what I experienced is applicable in your situation or not. In either case, I hope your weight loss continues at the pace you’re seeing now.

This was really significant for me too after I switched back to Lantus. When I first went on Tresiba, it seemed so nice that I wouldn’t have to worry about dosing as frequently. I’ve wisened up since then :wink:

Not being able to see the impact of basal changes while on Tresiba made it really hard to adjust around my basal insulin. I feel like that is a really key element of MDI since basal doses are more spread out. If you can’t predict the effects of basal changes, then you’re left playing catch up every time you change your basal.

Having experienced that now, I really appreciate Lantus a lot more.

I’ve heard good things about Levemir. I hope it continues to work well for you!

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Just went through a trial run on of dropping my pump to Tresiba/Afrezza. I agree about the difficulty of such a long duration and having to wait to see results of any changes! It drove me crazy especially coming from ultra control of pumping basals. I just went back to my pump today. I’m glad I tried it to experience what I thought, like you, would be a relief but it just doesn’t suit me. Plus I could not manage my significant DP and very low (0.1u) basal requirements in the afternoon. Which is the reason for pumping originally (25 years ago lol). Partly due to serious pump burnout, I stuck with it for 8 weeks because oddly I would have a random level night and morning :woman_shrugging: I can only assume it was somehow connected to digestion and foods but even so I need to the pump to handle those. I do have some disappointment as it was nice to be free of the pump for a while.

Any input on comparison of Lantus to Levemir?

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I took a pump break to try Tresiba for a month about two years ago and found the same. I just could never find a set dose that kept me stable throughout the day and night. My basal needs change significantly throughout the day and also throughout the month, and trying to handle that on with such a flat, long-acting insulin was just impossible. In addition, I really like being able to discreetly bolus from the pump (without even taking it out of my pocket) since I can bolus up to ten times per day. It’s possible that I may try another pump vacation with Levemir and see how that goes, since I do like the idea of having an MDI backup plan just in case.

I used Lantus for two years before I starting pumping and, although Lantus didn’t seem to last 24 hours for me (I had to two two shots per day as Lantus only seemed to last about 20 hours), Levemir seems to last an even shorter duration. If I forget a dose, even just taking a super small portion of my basal, my blood sugar goes from perfectly flat to skyrocketing almost exactly 16 hours after my last Levemir dose.

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That was my objective also. It had been so long I didn’t even know how to use a pen!!! lol I wanted that confidence. But Tresiba is not the long basal for me to do pump breaks with due to the issue we talked about. It needs at least 3 weeks to get a consistent dose going! Long ago I would do weekend pump breaks when I felt burnt out and it helped as I was always anxious to get my pump back. I think lantus still sounds like the best for me. OR maybe a split dose of Levemir would help with the extreme difference of high DP and low afternoons.

I missed this while on the break! Especially through the night when DP started and I had to suck down some Afreeza Which worked great btw Also, I didn’t realize how much I used my Tandem as G6 receiver and I for sure was going to hook back up when Control IQ is released. I didn’t like needing my iPhone even though most of the time it’s with me. When they release the direct to Watch transmitter that will help. Can’t wait!

Ha, I used to do this, too! When I was manually inserting infusion sets they would often hurt, and sometimes I’d have two or three insertions in a row that failed. I’d get so annoyed that I’d just forget about the pump and do Lantus for a couple days. I was always anxious to get back, though. I’m quite enjoying my new pump with its reusable insertion device, even though I’ve also had multiple issues (many occlusions and an electronic error alarm, but the company has been very responsive). So likely no pump vacation in the next little while, but I really wouldn’t mind doing a couple weeks at some point.

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I love my pump! I needed to reassure myself I could do MDI but mainly like you I was having difficulties with sites after so many years of pumping. I have to change sites so often and I’m struggling to find good spots. Also Medicare is fighting me on limits to the amount I need. It never ends. Nothing’s easy.

I’ve never used Levemir, but from what I’ve read, Lantus tends to last longer. I’ve read that for some people, Lantus is less consistent then Levemir. Lantus has been pretty reliable and consistent for me, but Levemir might be a better fit for people whose experience is different.

I’m not eager to try another long acting insulin. I think I’ll stick with Lantus. I also like that it has a longer tail so I don’t need to be quite as concerned about the timing of my doses as I might need to be with Levemir (or so it sounds anyway).

I’m really content with my diabetes care right now, but my plan’s prescription drug benefits are changing in January. They haven’t provided the details yet, but I’m anxious about whether I’ll be able to keep using the drugs I am. I’ll figure it out of course, just wish I had more info right now. Dealing with insurance and supply orders might be my least favorite part of diabetes- which is pretty ridiculous if you think about it.

Using Lantus, I would be prepared mentally for them to order a switch to basaglar… and if they do, I hope you’ll give us a full report

You may have already said but it’s hard for me to scroll through long threads with spotty internet on my phone— but are you taking Lantus 1 or 2x daily?

Yeah, I’d probably be okay with basaglar. I’m more worried about Afrezza. My plan said there’d be more info in November, so there’s no point worrying about it right now.

I take Lantus 2x a day- 9 am & 4 pm. My morning dose is 1-2 units higher depending on time of the month.

Yeah, based on my conversation with the rep from my plan today, I’m going to need to submit a claim for pre-approval to CVS Caremark in order to get Afrezza covered. It sounds like an arduous process.

Do you think it would be helpful to reach out to Mannkind before starting the process?

My plan officially releases the formulary on November 1st. Open Season starts 1.5 weeks later. Claims for pre-approval are supposed to be processed with 48 hours and appeals are supposed to be processed within 3 days (as long as all are marked as urgent). My plan is required to allow these to occur before Open Season begins. If both my pre-approval claim and appeal are denied, then I can shop around for a different plan, but I doubt any of the others will cover Afrezza without a similar process that I likely won’t be able to go through without already being a member of the plan.

It really depends on how your plan is structured with your employer… I’ve seen the cvs Caremark PA form for afrezza… basically unless you’re blind, or have a deathly fear of needles then Caremark isn’t likely to preauthorize it voluntarily…

A lot of employee plans are self funded though and just contract Caremark to do the processing and send them the bill, and if that’s your case there may be someone in your benefits dept who can just authorize it directly… that’s how it worked in my case

Based on my conversations with my plan and CVS, the prior-approval and appeals will be handled solely by CVS.

It is a self-funded plan, but they’ve completely contracted out the drug portion of their benefits to CVS.

Mine does too… but our plan rep still has over-riding authority to approve anything they want… as they should since they’re the ones paying for it

Cvs is a nightmare.

Did they do that at the prior-approval or appeal stage?

There was no appeal or PA through Caremark… I looked up their PA form online for it and it appeared there was no way I’d qualify for it on their terms—- so I contacted the claims administrator at my private insurance office (who contracts with cvs)… I said “I’m a type 1 diabetic, this is a new insulin that really helps me manage much more effectively—- but it’s not on the cvs formulary… the NDC is___________. Can you please approve it for me.”

She said “yes I’ll fax our approval over to Caremark” and that was the end of it

It’s still been a fuckaroo every time I’ve had to refill it though but eventually it works out…

I think your version of self-insured might be different and more efficient than what I’m dealing with. Any time I call my plan rep, they just tell me that they don’t have any information and to call CVS. I’ve had similar frustrations when I’ve ordered Dexcom supplies. It is always quite the run-around.

Anyway, thanks for chatting with me about it. I hope it ends up as simple as the way you’ve described it.

Yeah you gotta have direct access to the top level person… the flunkie who answers the phone isn’t going to be helpful.

I think I’ll call again tomorrow and see if I can talk to the people who are deciding the formulary. I doubt they’ll let me, but maybe if I give the NDC and say how awesome this drug has been for me then they’ll listen.

I order the boxes of 4-unit & 8-unit cartridges. Do you think that is the best NDC to give?