Afrezza inhaled fast acting insulin

brendan101

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Messages
64
Type of diabetes
Type 1
Treatment type
Insulin

Billytrack

Active Member
Messages
32
Type of diabetes
Type 1
Treatment type
Pump
Billytrack if you want some help with it I am happy to answer any of your questions and steer you in the right direction. You can PM me your mobile number or email if you would like to. Afrezzausers need to stick together. I can share my experience with you and it is positive for you, that would be brilliant!
Thanks very much for the additional info Brendan; I'm swithering on whether or not to get it. If it's as good as you and everyone else says I might need to go out stealing to pay for it! £255 ish a month is a lot of dough to pay out, on top of Freestyle Libre costs etc. I need to think about it.

I share your frustration with the NHS - I know they're doing their best and it's not easy, but sometimes you just want to tell them to stop wasting money on stuff they don't need, and focus on what is needed more. You feel like you have to fight hard to get what you need. In America, while they need to pay insurance etc they seem to get access to the best of kit when they need it, like Afrezza, or CGM's etc. We pay here, just not at the point of sale, so why shouldn't we get what we need? NICE has been reviewing Afrezza for YEARS. I mean seriously, how long can it take? Even if they approve it you've got no chance of getting it on the NHS, which is frustrating as in the medium term it would most likely SAVE them money!

Rant over, sorry!
 

brendan101

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64
Type of diabetes
Type 1
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Insulin
Hi mate, I had to pay a lot more than £255 a month. Each pack you buy lasts 2 weeks so I expect you will have to spend more. Afrezza is coming back to Mannkind next week and the pricing will change for the better although this may take time to filter down to the pharmacy. Why do you think the NHS would not approve Afrezza when you look at the benefits?
 

Billytrack

Active Member
Messages
32
Type of diabetes
Type 1
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Pump
Really? That's a lot of money, but I suppose it's worth it for the benefits it's brought you. I read about the license reverting to Mannkind, and it might be cheaper soon, hopefully.

The NHS might approve Afrezza, but it will take them forever to do it if they ever do. Look at what they pay for specific items - much , much higher than you or I would if we bought directly, and that's without the huge economies of scale that it would appear they are unable to negotiate. It's very frustrating.
 

brendan101

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Messages
64
Type of diabetes
Type 1
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Insulin
News just in. Afrezza is being provided for on the NHS for a patient in Leeds. All diabetics need to demand better treatment. Afrezza provides for real time diabetic control.
 

Billytrack

Active Member
Messages
32
Type of diabetes
Type 1
Treatment type
Pump
That is interesting Brendan, thanks. Hopefully will get it on the NHS before too long. Is it still working well for you?
 

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Afrezza has been amazing, completely levelling my BG with very little effort and making me feel well. My energy was fantastic. I cannot fault it. You need more basal as it does not hang around as long as injectable analogues. Real time control with non diabetic numbers. What's not to like.:)
 

TorqPenderloin

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Messages
1,599
Type of diabetes
Type 1
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Insulin
What's not to like.:)
The dosage table I attached is why I'm not going to switch. Ultimately, Afrezza is not going to work very well for someone who is sensitive to insulin and carb counts. It's really intended for people with type 2 (or others with insulin resistance).

With an insulin:carb ratio of 1unit:25g, that means have to eat at least 100g of carbs a meal or step it up to 200g.

Even if your ratio is a more standard 1unit:10g, that means you have to eat in 160 calorie (40g carbs X 4) increments.

Bottom line, Afrezza may pose challenges for anyone who low-carbs, carb counts, or is reasonably sensitive to insulin simply due to the fact that you have to dose in increments of 4units.


69cf330a4cd79f7350d041228d4beeff_thumb.jpg
 
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brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Hi There,

I see your concerns. Afrezza is not like any other insulin on the market. You need to forget about carb counting and exact dosages with Afrezza. A 4 unit of AFrezza is not the same as a 4 unit dose of injectable. There will come a time when the manufacturers will do away with insulin units on the packaging but it had to be there to show a comparison to what's available now. This was done as part of the trials in the USA and for regulatory reasons. Afrezza is a first phase insulin meaning that the insulin travels first from the lungs to the targett organ ie the liver and stops the release of glucose from there which does not happen to any significant extend with injectable insulin because most of it is floating around in the bloodsteam playing havoc on energy levels and BG control. Since the liver is not stopped from dumping out glucose at meal times for a diabetic person we generally go high after eating. This is why Afrezza can literally flatten BG profiles. It kicks in with ultra rapid acting pace after 12-15 minutes and clears the body within an hour meaning no risk of a hypo 2-3 hours after eating. I was really surprised when I first used it as I thought the liver would not respond as I have been an insulin dependant diabetic for 30 years. It did. I felt fantastic!

When I use Afrezza I normally take a 4 or 8 unit dose (8 unit dose if I am eating 30g CHO or more) and followup with a 4 unit dose if I need to 2 hours later. This has to do with the amount of carbs and the carb:fat ratio the latter can slow down absorption of glucose. I like to call it a blue dose (4) or green dose (8) with Afrezza. It mimics endogenous insulin. I was 100% more in range and no increase in hypos either. The irony of the whole thing was that I was not even trying too hard! It is definitely possible to control diabetes. The tools we have now have people in constant fear of hypos, coma, death or one of many life-changing crippling complications. Check out my good friend Sam Finta who is doing a great job of helping people with Afrezza. There is also plenty of Twitter users in the USA reporting amazing control with Afrezza, something that they never dreamed was possible until Afrezza came their way.
http://afrezzauser.com/

I looked at all of this before starting to use Afrezza. Mannkind the manufacturers have released a titration pack recently t help people overcome these barriers to UNITS that they have had to fear and deal with for a long time. It's amazing how it does what it does but it solves a very difficult problem that plagues people on injectable analogue insulin.

Afrezza is not a cure and it does require input but I had control back and it was so so liberating. NICE are looking at it currently and the NHS are funding it for at least one patient in the UK on compassionate grounds at present.
 
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brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Hi Tim,

Thanks for posting your experience. I have had similar too. You also handled the objections very well. The point is that if you are a true T1D, you will know how food affects you and once you try Afrezza, you will be amazed at its ability to normalise BG levels within range and keep them level. From my discussions with many diabetics, we are all different. I was truly amazed and quite emotional with the improvements brought to my health by Afrezza.
 

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
It is expensive in the UK. Mannkind are working on this. Tim, have you found a distributor in the UK?
 

bondj700

Member
Messages
21
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Diabetes....
The dosage table I attached is why I'm not going to switch. Ultimately, Afrezza is not going to work very well for someone who is sensitive to insulin and carb counts. It's really intended for people with type 2 (or others with insulin resistance).

With an insulin:carb ratio of 1unit:25g, that means have to eat at least 100g of carbs a meal or step it up to 200g.

Even if your ratio is a more standard 1unit:10g, that means you have to eat in 160 calorie (40g carbs X 4) increments.

Bottom line, Afrezza may pose challenges for anyone who low-carbs, carb counts, or is reasonably sensitive to insulin simply due to the fact that you have to dose in increments of 4units.


69cf330a4cd79f7350d041228d4beeff_thumb.jpg
Agree with you @TorqPendloin 100% this and the cost here in uk and fact there is not enough long term evidence on impact on lungs is reason i won't be currently switching
 

tim2000s

Expert
Retired Moderator
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8,934
Type of diabetes
Type 1
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Other
It is expensive in the UK. Mannkind are working on this. Tim, have you found a distributor in the UK?
No - not yet. As it's not yet EMA licensed, you can't get it through the UK distributors as a POM. The person in Leeds getting it is getting it off-license. Still have to go through a US pharmacy.
 

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Hi Mate,

The person in Leeds is getting it on the NHS. There is a UK based distributor who is distributing on behalf of Mannkind. I have the details if it helps you.

Brendan
 

tim2000s

Expert
Retired Moderator
Messages
8,934
Type of diabetes
Type 1
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Other
Hi Mate,

The person in Leeds is getting it on the NHS. There is a UK based distributor who is distributing on behalf of Mannkind. I have the details if it helps you.

Brendan
PM me the details Brendan.

I think the issue in the UK is that it's a POM medicine, so getting hold of it and using it requires some work on the GP/Consultant to get a private prescription, and it remains off-license so that makes it harder.
 

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Afrezza Update. So I am now approaching year 3 on Afrezza (I started September 2015). No problems to report and perfect glycemic control. My latest HbA1c is 5.8% I feel much better than when on Novorapid and Humalog. I will never go back. Afrezza everyday every time.

Brendan
 

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Sideburnt

Well-Known Member
Messages
106
Type of diabetes
Type 1
Treatment type
Insulin
News just in. Afrezza is being provided for on the NHS for a patient in Leeds. All diabetics need to demand better treatment. Afrezza provides for real time diabetic control.
I'm in Leeds, I wonder what the case was. Interesting.
 

gemma_T1

Well-Known Member
Messages
147
Type of diabetes
Type 1
Treatment type
Pump
I don't mind either that much. What I do mind is my blood sugar being all over the place - and I'm on a pump.

Take last night for example. I had a low carb broth for my dinner, I took 5 units of novorapid, and two hours later my BG was 15. I corrected. An hour later it's 16. I corrected again. All night it was high. Before I go to bed? Down to 4. Meaning I need to eat something. Sometimes I think it does it just to **** me off. I just can't handle it.

Hi,
I’m on a pump and your story is my life too.. two days are never the same... there is no logic I can see behind it. Today I woke up hypo then hit 18 even though I had insulin with a 25g carb breakfast!!! By lunchtime ( I never snack mid morning - even though I’m always told I must) I was down to 4.8 ate cheese and salad with insulin as I couldn’t resist some cherries.. bg went up then down again and then decided to go up, up and away and nothing could get it down until I missed dinner but gave myself another corrective dose and upped the basal and lo and behold Hypo!!! I don’t know if it’s the heat it’s roughly 35 degrees so it must affect the insulin in the pump, all I know is my neuropathy is driving me crazy tonight. My A1c is 57 but the docs are ok with it but I live with highs and lows even when it was 50-52 it hid the two extremes extremely well from them.
My best wishes to you and if you even come up with an answer as to why please let me know.
gem
 
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Levy

Well-Known Member
Messages
312
Type of diabetes
Type 1
Treatment type
Insulin
Hi,
I’m on a pump and your story is my life too.. two days are never the same... there is no logic I can see behind it. Today I woke up hypo then hit 18 even though I had insulin with a 25g carb breakfast!!! By lunchtime ( I never snack mid morning - even though I’m always told I must) I was down to 4.8 ate cheese and salad with insulin as I couldn’t resist some cherries.. bg went up then down again and then decided to go up, up and away and nothing could get it down until I missed dinner but gave myself another corrective dose and upped the basal and lo and behold Hypo!!! I don’t know if it’s the heat it’s roughly 35 degrees so it must affect the insulin in the pump, all I know is my neuropathy is driving me crazy tonight. My A1c is 57 but the docs are ok with it but I live with highs and lows even when it was 50-52 it hid the two extremes extremely well from them.
My best wishes to you and if you even come up with an answer as to why please let me know.
gem

I have very similar experiences (Novorapid and Levemir). Yesterday we had a BBQ so ate mostly meat, with a bit of coleslaw and a few slices of baguette at around 17:30. I was hovering at 5.8 until 21:30, when suddenly I shot up to 15.8 even though I hadn't eaten anything else all night. I corrected, but had gone up even further to 17.3 by 22:30. I took another correction, and at midnight it was finally coming down so I went to sleep. Woke up at 3:00 and it had gone back up to 14.4!! Another correction after I'd taken a fresh tube out the fridge and I was finally back down to 5.6 by the morning.

I swear to god, some days you're just fighting a losing battle no matter what you do. Some days I don't even have to try and I'll stay perfectly in range, other days nothing will work no matter what I do. It really makes me want to scream sometimes!