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Post by papihoyos on Apr 4, 2015 11:12:30 GMT -5
I started Afrezza on March 23rd. Below I’ve provided a chart on my progress relative to my FBG with a 7d average and trend line. The results on the chart are not impressive however what is not shown is that with Afrezza, I’ve been able to manage the range much better. For example, prior to Afrezza, it was not uncommon for me to peak to 225 or better and with Afrezza measuring 1hr and 2hrs after a meal, I stay generally the same or 10-15 points lower. Also I stopped taking Actos.
With regard to dosing, I’m totally on my own. My GP has not given me any guidance because frankly he’s not familiar with the product. I’m his first patient using Afrezza. First of all, I’ve have not had any adverse reactions to taking Afrezza. No cough or sore throat, no nothing (to use a double negative). Frankly, sometimes I wonder if I inhaled it at all. Only the results on my BG monitor proves I’ve taken something. Notwithstanding, I’m disappointed with my results, I was hoping to achieve Spiro’s results. I guess I’m more insulin resistant and time will only tell. It’s only been roughly 10-11 days.
I took Afrezza cautiously at first and only took 4u at a time trying to figure out my optimal dosing. I have not taken insulin before, this is my first attempt because I refused to do injections. I have now determine that my optimal dosage is 12u to make a real impact in my BG levels. The lowest I’ve seen taking 12u is 82. Can’t wait for MNKD to get approval on the 12u version in Q2.
Also it appears I get better results when I do my 40 minute walk the previous day. I try to do a 40 minute walk at least every other day. I would like to do it every day, but my work hours make it difficult. It’s not uncommon for me to work 12+ hours in a day, come home eat very late then go to bed. I need to make some lifestyle changes but that’s another story. One other side effect, I’m losing weight. This is by no means scientific yet but give me 90 days. I feel much better and not having those hyperglycemic events.
What I haven’t figure out is why my FBG ranges between 130-140 every morning regards of my bedtime BG which has ranged from a low of 95 to high of 150. I’m going to experiment taking a 4u dose before I go to bed to see if it makes a difference in my FBG level.
Stay tune for further updates.
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Post by Deleted on Apr 4, 2015 12:05:38 GMT -5
Thanks for posting that papi. May I ask when you're dosing afrezza? Is it at the start of the meal, after it has begun or some other time? Look forward to your updates
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Post by papihoyos on Apr 4, 2015 12:37:24 GMT -5
Thanks for posting that papi. May I ask when you're dosing afrezza? Is it at the start of the meal, after it has begun or some other time? Look forward to your updates I've been all over the board, before during and after. I'm a fast eater so now I'm consistently dosing after I completed my meal. Seem works best for me. When I did before I started my meal, it peaked to soon. |
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Post by jattdvm on Apr 4, 2015 12:40:44 GMT -5
My brother is a intermal medicine resident in North Carolina. The endocrinologists at his hospital have not had any meetings with sanofi reps about Afrezza. The sanofi rep of that area has not been trained on Afrezza. They are doing a slow launch initially. Most sanofi reps have very little or no knowledge of Afrezza at this point, they will in the next few months. I also have freinds that are family practioners in southern and central california, their sanofi reps have not had any training on Afrezza as of yet either (neither have the doctors). IT is safe to assume they are doing a slow launch (like sanofi stated). We should not be worried about the weekly prescription numbers at this point.
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Post by spiro on Apr 4, 2015 12:42:40 GMT -5
Papi,
Thanks for the update. It took me about 7-10 days before I noticed my FBG got consistently below 100. Hopefully, you will be able to figure out what adjustments it will take to get better numbers. I wonder if dropping the Actos has made it a little tougher for Afrezza to kick in? I am sorry that I can't provide any suggestions. I have been making a very serious effort to walk at least 5 times a week and cut down on carb intake. That for sure has helped. But if I cheat, I will still get those post meal highs, they just don't last as long as before.
Spiro here
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Post by orlon on Apr 4, 2015 13:06:00 GMT -5
I'm not sure about the slow rollout but it appears Sanofi is dragging its feet on training their reps and getting the word out about AFREZZA. Most of the rollout appears to me to be Mannkind driven and word of mouth. I'm beginning to question Sanofi's motives behind this partnership.
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Post by esstan2001 on Apr 4, 2015 13:23:56 GMT -5
I'm not sure about the slow rollout but it appears Sanofi is dragging its feet on training their reps and getting the word out about AFREZZA. Most of the rollout appears to me to be Mannkind driven and word of mouth. I'm beginning to question Sanofi's motives behind this partnership. Frustrating as this is, it makes no logical sense from a financial standpoint for Sanofi to do anything but follow their plan (unknown to us) that benefits them most. You can run the worst case nefarious scenarios, but nothing comes to the surface since, if Afrezza looks to be a big success, Sanofi can just make a run at Afrezza or Mannkind. Any scenario involving some form of collusion to keep Afrezza off the market or minimize its chances just doesn't seem worth the risk. Any dragging of the feet almost certainly has to do with ensuring the success of the rollout, given both he timing of, and the amounts of resources that are allocated. |
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Post by jpg on Apr 4, 2015 16:02:36 GMT -5
Papa,
There are a few moving part to what you are doing and also a few specifics to the stage of diabetes you seem to be at that make management very different than what you might read for thr mostly type 1s who post.
The concept of minimum effective dose is possibly one of the key concepts. You are probably right about the 12unit dose being desirable for some patients and I suspect this might be a minimum effective dose for some (others will need more). Targeting good post prandial control might be a wise first step as that would be a marker of control and proper dosing. Once that is achieved the test should improve (insulin resistance and fasting BG).
Ideally you should maybe find good medical advice in your area to guide you? An interested PCP or a diabetic educator who wants to be cutting edge?
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Post by bob9478 on Apr 5, 2015 11:05:41 GMT -5
I also just started last Wed(April 1st) Not much in the way of numbers to share as yet. I was in a trial back in 2007 with Exhubera. When they pulled it from the market my last A1c was 5.1. I've been running 7.1 the last two times. I am hoping that I can at least split the difference with Afrezza.
I am 67 yrs old and have had t2 Diabetes for about 20 yrs. My biggest consideration in trying this is to put as little pressure on my eyes as possible. 4 yrs ago I was diagnosed with an eye problem that requires an injection in both eyes every 6 weeks. Get your eyes tested regularly if you have not been doing so.
I will follow these posts and hope to gain some valuable info from those of you with more experience. I will post my own as solid info is available.
Good Luck to all. I feel in my heart of hearts that this product may be the answer for those of us so afflicted.
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Post by harrythekingisindahouse on Apr 5, 2015 11:19:34 GMT -5
Hi Bob and Papihoyas, not sure if you are following Afrezzauser (Sam Finta) but he might be helpful for you to also follow. His twitter link is twitter.com/afrezzauser |
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Post by kc on Apr 5, 2015 11:50:59 GMT -5
Bob sorry to hear about your eye issues. Is the injected drug made by Regeneron? Just curious. Seems that Sanofi is working to close the loop on treatment care for diabetics.
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Post by papihoyos on May 17, 2015 14:24:20 GMT -5
Sorry for not posting in some time. I’m amazed on the numbers of post by some members, lol, I guess I have a life outside of these boards. I’m posting this update on two boards I regularly read, MNKD.Proboards.com and Diabetesdaily.com, so this post will be identical.
Well it been about two months now that I’ve been using Afrezza. I started formally keeping track and recording my FBG level just over 90 days ago so I could track my progress, if any, and to provide a baseline. In recent times, perhaps the last year, my FBG would normally be from the mid 130’s to 165 or higher. I’m happy to report that my average has dropped into the 120’s. Actually my current 7 day average is 121 and 14 out of the last 15 days, I’ve been under 130 include one 98. A definite downtrend. I hope to see Spiro numbers soon into the 90’s.
I saw my GP on 5/9 and blood test 5/4 (next schedule blood test is 7/6). My GP wants me to be tested at least every 60 days for now. I’m his reluctant experiment. I say reluctant, because he is only doing this because of my insistence so the least I can do is comply with his 60 day requirement. My A1c dropped to 6.2 from 6.5 and frankly I was disappointed. Reflecting on it, I was only on Afrezza for roughly 7 weeks and I stopped taking Actos, so the fact that it went down at all, I guess is positive.
One observation I communicated to him, I sometimes test my BG at bedtime and find it often under 100 but by morning, its back over 120 or 130. Just curious. He stated it’s my body’s reaction to prevent me from a hypo during sleep.
Dosing has been the biggest challenge. I was very reluctant at first, only taking 4u at a time. I now take 12-16u regularly with a meal. On Mother’s Day, I took my wife to brunch at Shooter’s in Ft Lauderdale where my son is the Chef de Cuisine (shameful plug), and over a three hour+ meal I took 24u. When I got home my BG still 165 so I took another 8u and by morning I was at 122. I find I get the best results if I take Afrezza after my meal and in this case during the meal. I had three servings and a trip to the dessert bar. Without Afrezza, I would have been in the mid 200’s and perhaps in the 300’s woke up in the morning with 175 or better.
Insurance has been a challenge. I use the discount card that reduces my 30-4u 60-8u package to $166 but it only last roughly two weeks. So on my next refill, since it was within 20 days, I had to pay the full sticker price, Yikes $339. Since I’ve refilled my scrip twice at the 20 day interval and paid $166 at Walmart. The Doctor’s office is working with Humana, my insurance carrier, but since I didn’t take insulin prior or even injections, it’s has been a challenge. Also, since my A1c is considered normal by ADA standards (<7) the insurance carrier is saying I don’t need insulin. What they don’t understand is the damage it has done over the last 9+ years coupled with my denial. I can’t wait for the 12u package to hit stores since it will be my de facto standard dose. For now, I’m fortunate enough to handle the out of pocket costs with the discounted card.
In summary
• Positive trend on my FBG
• I actually feel better and not experiencing the hyper of the past
• Insurance sucks!!!
• Lastly, not sure if this is because I’m controlling my BG range better, but I’ve lost 11 lbs as well.
Feel free to contact me if you have any questions.
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Post by tripoley on May 17, 2015 14:35:00 GMT -5
Glad to see you back. I asked Spiro the same question. Can you provide before and after results for good cholesterol (HDL), bad cholesterol (LDL), triglycerides, weight and blood pressure? It looks like your weight has improved. If these improve on Afrezza it will help open up use for prediabetics as well.
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Post by Deleted on May 17, 2015 15:07:37 GMT -5
Dosing has been the biggest challenge. I was very reluctant at first, only taking 4u at a time. I now take 12-16u regularly with a meal. On Mother’s Day, I took my wife to brunch at Shooter’s in Ft Lauderdale where my son is the Chef de Cuisine (shameful plug), and over a three hour+ meal I took 24u. When I got home my BG still 165 so I took another 8u and by morning I was at 122. I find I get the best results if I take Afrezza after my meal and in this case during the meal. I had three servings and a trip to the dessert bar. Without Afrezza, I would have been in the mid 200’s and perhaps in the 300’s woke up in the morning with 175 or better.
Sam afrezzauser takes the first dose between starting of the meal to 15 min and then a follow up dose like after 1.5 to 2 hours if the glucose levels are on the rise. You can talk to him on twitter.. |
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Post by papihoyos on May 17, 2015 15:24:45 GMT -5
Glad to see you back. I asked Spiro the same question. Can you provide before and after results for good cholesterol (HDL), bad cholesterol (LDL), triglycerides, weight and blood pressure? It looks like your weight has improved. If these improve on Afrezza it will help open up use for prediabetics as well. Before / After HDL 41 / 32 LDL 128 / 110 Triglycerides 125 / 126 Total 194 / 167 all # better except for HDL Weight 274 / 260 - I'm 6'1" Off Benicar for blood pressure since March visit, this visit 118/78
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