Hello, I’m new to this forum and appreciate everyone’s contributions, thank you! I was diagnosed 1 /2 yrs ago Type 1, age 52. I’m experiencing depression and agitation with wearing 2 devices (Omnipod pump + Dexcom CGM). Since it’s summer weather and I’m wearing tank tops/bathing suits, my devices are often exposed. I get really tired of talking about it with strangers, being stared at etc… Just feeling self-conscious, and rarely making eye contact with people… I need a pump break.
Can anyone give me advice? I plan to try returning to pen shots but I’ll keep my CGM so I’ll receive alarms for Lows. Thank you.
I had to do a pump hiatus for about a week a year ago when my pump broke down going into a long weekend and it wasn’t possible to get it replaced right away. Fortunately I keep an emergency back-up supply of Lantus and Novolog pens. It was only my 3rd year pumping at that point, but I was surprised how suddenly at-sea I felt, at least as regards using Lantus again. But my CGM wasn’t affected by my pump failure, and that helped a lot. I know I won’t be alone in strongly endorsing your plan to stick with the CGM even if you go off the pump. Not a few people around here have said if they had to choose between them, they’d keep the CGM over the pump. Though it’s nice not to have to choose.
ETA: Meant to say, there have been a few threads here touching on how to figure out your Lantus dose if you haven’t been using it for a while, so you might search out those. In my case it was about 20% more than my total basal dose on the pump–it just seems to be less effective that way.
Thank you DrBB. I see my endo tomorrow and plan to get her guidance on dosages for Lantus and Novolog. I feel since I eat so low-carb now I should only need 2 shots a day, maybe 3. And maybe I’ll just feel more free and less stared at. I definitely will keep my CGM (it’s tiny and hidden under my shirt). But my Omnipod is big and on my arm. Have a great day!
Janet - here is a pretty good article from Mike Hoskins of DiabetesMine. He says in the article he went to Tresiba and afrezza. I think he had such success I am not sure he ever went back to the pump but you would need to check with him on that.
Thank you DrBB, my endo gave me the correct doses this morning at my appointment so I should be good. I hope. I’ll remove the pump tonight and try to do just shots for about a week, see how it goes.
Just fyi, she said to always overlap when switching from pump to shots then back again (ex: tonight at 8pm I’ll give myself a Lantus shot, at 9pm I’ll remove my pump. When I want the pump back, I put the pump on one hour before it would be time to give myself the Lantus shot).
Thank you, very interesting. I didn’t know insulin inhalant existed. I asked my endo about it this morning and she said “it didn’t take off”, “people don’t seem to like it”. She didn’t say it was ineffective. She did say only 1 of her patients tried it and broke out in hives, an allergic reaction. Thanks for sharing this article with me.
This surprises me. I can only think of positive reviews by Afrezza users. Not just positive reviews, but high praise of its use and effectiveness. I’m sure experiences vary, but by far, my impression is that more users are pleased with it than not.
Hi Lorraine I read some more about it and yes, lots of positive reviews can be found. I use very little bolus insulin because I eat few carbs (less than 30g a day on average) so the type of dosing that it does is too much for me. I think. I’ll talk to my Diabetes Educator about it soon. Soooo tired of wearing a pump. And it’s only been 1 year.
This is a common first objection that liquid insulin users make when presented with the 4, 8, and 12-unit doses of Afrezza. Afrezza dose sizes are not equivalent to liquid insulin! The best way to assess its usability for you is to actually try it. That way you may keep your emergency glucose close at hand and safely learn the difference of an Afrezza dose compared to liquid insulin.
Generally speaking, Afrezza users find the Afrezza dose size is equivalent to fewer units of liquid insulin. I have used Afrezza for two years now. I use it almost always for high BG corrections. I also eat a lower carb and only take about 30 units of insulin per day. I find Afrezza a great way to quickly knock down high BGs safely. Another positive is its lack of tail action when compared to the “out hours” of a liquid insulin correction.
Janet - your Endo clearly has no idea what she are talking about. All afrezza is is the exact same human insulin which is release by a healthy pancreas. Its not an analog, its human insulin. The particle which stabilizes the molecule is totally inert so if her patient was allergic it would be very rare.
The thing about afrezza is it works in sync with your liver. Between the rapid onset it also get out of the body. As a result dosing can be really really course with little worry of hypos. On the VDexdiabetes.com website there is a white paper which profiles how a non-diabetic taking afrezza actually reacts. If you look at the graphs what you wil be seeing is the liver dumping glucose preventing the lows. http://www.seventhform.com/vdexdownloads/vdex-whitepaper-072817.pdf
I would suggest you reach out to Mike Hoskins directly. I know both Dr Steve Edleman and Gary Scheiner are also now using afrezza.
I wonder if she was thinking of an earlier inhaled insulin, Exubera, which was withdrawn from the market after only one year after it didn’t do too well – among other reasons, it was expensive, the inhaler was bulky, and there were concerns about compromised lung function. On the other hand, just about everything I read users say about Afrezza is overwhelmingly positive.
Thank you, I definitely will reach out to him and learn more. I will find out if my insurance covers it and give it a try if it sounds like a good fit. I’m excited to learn of this option!
“By removing the need for injections, inhalable insulin could help thousands of needle-phobic patients adhere to their treatment regimen.”
From an article on inhaled insulins and the history of and such. But I see this again and again in different articles. Yet on these forums, this is NEVER mentioned as a reason I have heard ANYBODY to decide to use the Afrezza.
Why would the Afrezza NOT be marketed aggressively for the reasons that the people on these forums who actually use it say for the REASONS they use it? Doesn’t make any sense to me.
My best guess is a needle-phobic marketing director trying to imagine what the best reason to buy Afrezza would be?
It’s also possible that your endo’s info came from the failed roll out by Sanofi. Mannkind recovered the rights to market it, and it seems to be doing much better. It’s expensive and there are some restrictions on using it (no COPD). But I’m somewhat needle-phobic and appreciate Afrezza. I still have to make it through my morning Tresiba shot, however, since it is only a (very) short acting insulin.
Tim - when Sanofi had the marketing rights their target market was the T2s. They never took the product out of a controlled launch but the few advertisements they had where all about it being inhaled. Several months into the launch they decided to “go in a different direction”. By the end of 2016 they ended the marketing agreement and later in 2016 announced a joined partnership with Google/Verily called Ondou.
Why they ended the agreement is up for speculation. One is that if afrezza was actively marketed and became the front line treatment for T2s then not only would the other orals no longer be needed but it would kill the T2 Lantus/Toujeo market. Sanofi had just bet the farm on Toujeo and if the T2 would never progress they would never need the basal. Especially since they principle issue with T2s is not during fasting but the meal time sugar spikes. afrezza could have spelled doom for much of the T2 basal sales which is huge.
Ondou is suppose to announce their product offering soon, as they are suppose to launch in 2018 so the speculation should soon be over. Dr. Steve Edelman who is a big afrezza fan was reported as being the architect of the Ondouo protocol. So, we will see what happens.
When Mannkind got the rights back they decided the “low hanging fruit” market was the T1s since the early adopters and the most vocal had been the T1s who are claiming on social media it had changed their lives. Those T1s were more about the tight BG control they were getting and Mannkind followed this lead so their focus has been more on how it mimics the healthy pancreas and how fast its in and out not on the shots.
As they redirect with corporate wellness programs and the bigger T2 market the “No Shots” will become a big thing for marketing along with no carb counting. Of course near non-diabetic time in range BG is the key. In the short term after getting the marketing back, for little Mannkind it was more about making sure afrezza really was as good as Al Mann said it was so they could get the financial support to pay the electric bill. I think what every one who has been following is now seeing is afrezza is better than almost everyone thought, except Al Mann. Where a lot of new T1s are starting to use it is for corrections. Thats how Gary Scheiner started along with many others.
Thinking back, I believe we had personal experience with a sales/marketing rep involved in this prior to the launch. In the 2012~2014 timeframe. And the big message was that it was inhaled.
My thought was - so what? (to keep it clean)
Frankly it seemed stupid, juvenile and gimmicky.
It was not until I read about people’s experience with it on the forums www.tudiabetes.org and forum.fudiabetes.org that I started to understand it has actual real benefits and was not just some gimmick.
On the other hand, I approach this from a T1 perspective and probably don’t understand the T2 perspective. So perhaps the original marketing approach was logical if the target audience was T2 which clearly is substantially larger than the T1 population. (My recollection is that 95% of all diabetics are T2?)
Personally I have never liked needles and its big things for a lot of T2s So for T2s we have the “Step Program”. The primary issue the T2 has is not producing enough meal time insulin. So we give them metformin which does nothing to address the issue. Then we give them an additional oral and then even more. None address the meal time BG spike.
The primary reason for this was insulin was always seen as dangerous, required education and the stigma of taking shots. Along comes afrezza which works with the liver so the concerns of hypos are very low. Its does not require carb counting - take the small, medium or large and when in doubt always go with the bigger one.
The entire thing is so far out of the box for well educated PWDs it can’t be real based on experience. However, that’s the way a healthy pancreas works and when it dumps too much insulin the liver kicks in.
I definitely will keep my CGM (it’s tiny and hidden under my shirt). But my Omnipod is big and on my arm. Have a great day!
