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Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhaled insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments!
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I have been on very low dose of Victoza for several years. For me it works better than Symlin (aka amylin, the other beta cell hormone) to control emotional stress eating patterns and has helped me to maintain BMI within what is normal for my petite height and bone structure. Victoza does not cause unpredictable hypoglycemia like Symlin did when I was on it.
This reminds me of another thing that baffles me, that researchers from T1DExchange can hopefully help our community understand: How is Symlin approved for T1 by the FDA, while Victoza/Ozempic are not? Aren’t these all GLP-1 RAs? Symlin has a much less user friendly duration of action and the requirement that it be taken with meals feels like a big step backwards when we have modern insulins and delivery systems like pumps that allow us to live our lives on our own schedules instead of eating only three meals per day. Is it true that someone on an FDA review panel freaked out about the possibility of increased hypoglycemia in T1 on these drugs? To me, that makes no sense. I had a higher A1c, higher insulin needs, and frequent unpredictable hyperglycemic excursions without Victoza or Ozempic, and I had a lot more hypos without these meds because I had to give so much more insulin for corrections. It also boggles the mind to see the package inserts on these drugs say that they have never been studied for use with insulin, when they clearly have been: There are many published studies in T1. I would love to hear from anyone who knows more about this—particularly given that P&T committees at PBMs and other entities use package inserts and FDA approvals as justification for their decisions, which dictate our access to prescription medications.
I too was on Victorza, off label, low dose with great success…and then is started inducing severe gastroparesis. I was so upset, both my endocrinologist and gastroenterologist tries to make it work, but i had to stop. Symlin does ok, better than nothing.
I chose No as I was incorrectly diagnosed with T2 and don’t remember what pills I used with no effect on my blood glucose for approximately two months.
I have not been prescribed anything besides insulin delivered subcutaneously for this condition.
have been using Metformin for a long time. sugars ran wild overnight which may have been caused by taking Lantus 1x per day in the morning.
was using Trulicity for a while but that didn’t do anything.
I too chose No but was misdiagnosed as T2 and was on pills for less than a year and told my doctor I needed insulin. That’s when I went to a specialist. Found one taking new patients after going through 3 rejections. It was a long time ago, 2000, but I think it was something like glyburide.
I currently use Afrezza in addition to T-slim pump with CIQ. Doc wants me to bolus with the Afrezza and rebolus to cover meals. It usually works well as the onset is quick but the falloff is quick, requiring additional meds to finish the meal spike.
My answer is no but I am interested in getting some inhalable insulin to use for times such as pump failures or miscalculations of policies that result in extra high blood sugar.
That should have read “miscalculation of boluses “. I am dictating to Siri and apparently she does not know the word boluses! 🙂
Only when 1st misdiagnosed as T2. I Was prescribed Metformin which did nothing for me
I was using Afrezza ( inhaled insulin) and loved it! Unfortunately, I developed asthma like symptoms when using it and had to stop the therapy.
Sorry to hear that you can no longer take Afrezza. I have been on it for several years with great control. My asthmatic like symptoms were caused by the metacresol in Tresiba, Toujeo, and Levemir. The only ‘long-acting/intermediate-acting’ I can take is Novolin or Humulin N.
Metacresol! I’m gonna have to google that. Find out why it’s put in pharmaceuticals if harmful to humans. (This question in response to Judith’s comment.)
Was on Tresiba for a long-acting insulin. Still taking metformin.
Can’t use inhaled insulin due to asthma
No, but I want to get Afrezza. My insurance won’t cover it but I may get help from my physicians assistant who specializes in diabetes in getting a reduced prescription for out-of-pocket-cost. I have an appt. with her tomorrow.
Call Afrezza direct–they authorized a great deal with a mail order pharmacy in Florida that made it affordable. I love it for bringing high BS down quickly.
I was diagnosed in 1945, but I was then diagnosed with insulin resistance in 1998. Many type 1 diabetics have some insulin resistance. I had gained a lot of weight after stating Humalog in the late 1990s. I had used animal insulins prio to that time. I used Avandia that caused some weight oss. Then I started Metformin in 2010. I then lost all the weight I had gained. I am not overweight now, and the insulin resistance is under control.
how old were you in 1945, at the start???
I tried Afrezza and really liked how quickly it worked to bring down highs, but if I used it for meals, I tended to get low quickly so stopped using it.
Sheesh! I use lispro (Humalog brand) as pre-meal bonus, and I get a too-quick-low, if time is longer than 15’ from time of bolus to time I start eating. So I usually prepare meals first (which can take 20’ to 50’), then I inject.
Afrezza is great for resolving high BGs!
After retiring to Florida 20 years ago, I was letting my PCP handle my Type 1 diabetes (dx’d in 1976) because the closest endocrinologist was over 1 hour’s drive away. As my control began to slip (higher A1c’s) and my incidence of serious hypoglycemia episodes increased, his solution was to tell me to reduce/eliminate my NovoLog and increase my Lantus dosage. He also prescribed Avandia for me. After 2 weeks of taking Avandia and having even more serious hypoglycemic events, I advised him I would no longer take it. I never felt comfortable with his approach to my diabetes as it made no sense to me but deferred to his being a doctor. I remained under his care until 2010, despite my continued misgivings. In 2010, my husband I were on vacation in Idaho, I was hospitalized there with a severe hypo episode. After returning home from an aborted vacation, this PCP advised me to keep on doing what he’d told me. At that point, I realized that he would kill me if I continued under his care and self-referred to an endo in Tampa, about 75 minutes drive away. That endo re-educated me about insulin to carb ratios and reduced my Lantus dosage by 25%. My PCP was either too arrogant to recognize that treating my diabetes was beyond his capabilities or too ignorant. Within 6 months under the new endo’s care I transitioned from MDI to an insulin pump. I had resisted pumping for years. I also found myself a new PCP.
Bottom line, I’ve learned to trust my gut. Not all doctors know what they are doing.
I had similar problems for years under PCP care. “You’re doing fine let’s not change anything.” Kept me on R/NPH (aka the “Eat Now or DIE” regimen) for 20 years, long after analog insulin and carb counting were standard of care. When I finally got a referral to Joslin, the endo said “Yeah, you’re not doing too bad considering your regimen doesn’t make any goaddamned sense.” Put me on Lantus-Novolog and carb-counting classes and my life changed.
Took an oral agent very briefly when I was in the process of being diagnosed. Don’t even remember which one, maybe glyburide or glipizide.
After five years on a Draconian diet, my A1C was 12 something. I tried Diabinase, which did nothing and was then placed on 70/30 insulin, which I used until I saw an endocrinologist and started on a regimen of slow and rapid insulins.
Was taking Victoza and now I’m on Ozempic in addition to my Omnipod pump. It’s been so helpful with keeping highs level and curbing my appetite. I’ve been able to lose weight because of it.
Metformin, but struggled to remember my morning dose and only marginally helped. Ozempic caused too many gastro-intestinal issues.
Metformin seems to be a very popular supplement even among people who have no diabetes diagnosis. Some people claim it helps establish their circadian rhythm…they claim they fall asleep faster and sleep more soundly and awaken fresh, well-rested. And I notice (e.g., from some PBS doctor shows) that it’s often suggested for pre-diabetics. I’ve not tried it due to possible side effect of causing irritable bowel.
Tried Victoza to help with hunger associated with lack of amylin production. Worked great, but after 8 months it induced severe Gastroparesis and I had to stop.
Now on Symlin, which more directly replaces amylin. Works grear for mealtimes, need less insulin, feel satiated. But once it wears off (~2hours), all the hunger comes back. So it’s still a struggle.
Been on metformin for a few years now, I find it helps my basal rates stay more consistent throughout the day. I still have 5 programmed rate changes per day, but the differences between those rates were reduced.
I’m also on LDN (but I have several other autoimmunes it’s helping.) This, too, reduced the crazy basal rates throughout the day. It blunts carb cravings, but not hunger. I sleep more soundly.
Cravings? Yeah, I get those from time to time. It’s not easy kicking carbohydrate addiction. But adding more fat and vegetables to each meal helped me. Stuff like pure peanut butter and tahini and almond butter (non-hydrogenated, no sugars or other stuff added) and walnuts, Brazil nuts, cashews, hazel nuts, sunflower seeds, pumpkin seeds (pepitas), almonds, butter, cream, full fat plain unsweetened yoghurt, avocados. Got a craving? Try a couple of ounces of raw turnip, raw rutabaga, raw cabbage, celery, jicama. Jicama tastes sweet but is very high fiber and very low net grams carbohydrate. Caution: adding more fats to your diet while cutting carbs may require increasing your long-acting insulin, and decreasing the fast-acting. So keep a close eye on those blood-glucose levels and let your family and your diabetes team know what you’re up to. Pump users might need to adjust their programs.
Hi Wanacure, yes I follow a keto-ish diet, but also do not tolerate nut butters- at all- nor most legumes like peanuts. I tolerate walnuts, which is great. Chickpeas if with EVOO or in authentic hummus. Roots? Forget most of them for me! Most are not low carb enough for me, even with fat. Trust me, I’ve experimented, A LOT. We’re all different, plus I have other autoimmunes I manage with diet. It’s complicated, but I appreciate your input!
Metformin at night, since back when I was on MDI and couldn’t get a grip on Dawn Phenomenon. Pump pretty much takes care of DP now, but still taking it because it helps absorption generally. More recently, Jardiance, which has had a huge effect on attenuating excursions, both high and low.
T1 X 51 yrs, had insulin resistance and weight gain. Started on Ozempic, a T2 drug. Insulin use dropped 40% and I dropped 45 pounds.
When I was first diagnosed in 1985 I was on oral medicines. They stopped working about 9 months later and I was taught how to administer insulin.
I wonder how many people have had a similar experience? I think it’s very misleading to give pre-diabetics and Type 2s the impression that just increasing their oral pills will enable them to indefinitely continue their typical developed-country over indulgence in sugary hydrogenated pastries, cookies, pies, icings, sauces, dressings, soft drinks, etc. Do we eat to live? Or live to eat?
Tried Metformin and Tirzepatide for weight loss, but no effect. Used Ozempic and had some weight loss, but switched insurance and is not covered, so had to stop.
Used Trulicity for a while and loved that I could lower my insulin intake and I lost weight. I had to stop using it when I went on my Tandem tslim because I guess it messes with the algorithm.
Yes I used Symlin and I liked it. I stopped when I started C IQ on the Tandem pump so it wouldn’t interfere with calculations.
Ten years or so ago, my endo had me use Symlin as part of a clinical trial in addition to insulin. It did not help me and I did not continue with it after the trial.
I was initially diagnosed Type 2 and took oral meds which seemed to work until they didn’t. Then diagnosed as LADA after C peptide test.
First diagnosed as T1 as a teenager and a few years later saw a new Dr who couldn’t believe it and he put me on metformin for 2 months but discontinued insulin. Naturally that didn’t work and returned to insulin therapy. 20 years later another Dr added metformin thinking it would break down my insulin resistance but didn’t work any. Thank goodness for insulin! Wouldn’t still be here without it….
I have used Symlin, but Medicare does not cover it. I currently also use Metformin, Acarbose and Jardiance (SLGT-2L). I have developed insulin resistance after 60+ years with T1D and the Type 2 drugs help to keep my dose down to prevent weight gain.
Over the last 61 years I’ve been on probably every type of insulin. Ever since being on the pump and using fast acting regular I have been about 20 pounds heavier. In looking at many of your comments I’m going to ask the doctor about additional medication‘s to use seems like lots of you have had success with Met Forman. My A-1 C is are always in the 5.5 range. I need a low carb diet not very much of an appetite but still have the extra pounds. Having to do out of body chemistry does have its challenges.
I’m currently on Ozempic for weight loss, 10lbs down with unpleasant GI effects but appetite suppression.
I use Afrezza when blood sugars go high. I use one of the 4 unit packages (about 2 units for me) & it brings my blood sugar down in less than 1 hour. LOVE IT!
I’ve used Victoza, a GLP-1, in the past for insulin resistance. May be going on an SGLT-2 for my kidney.
I’m following this. I’d love to try Ozempic to get rid of about 15 extra lbs. My Endo says no – for some reason he thinks I will go into DKA – as if I am stupid enough to stop insulin? FYI, I barely eat at all, only when I am at my bg target (80).
When I was first DXd with Diabetes14 years ago, the doctor wanted me on insulin right away, Knowing that would cost me my class 2 FAA medical, I opted to try to fight it with T2 oral drugs. After less than a year later,, having dropped from 180 pds to 110 I gave up and got grounded.
As a former FAA Inspector, the FAA now will allow a T2, under tight control, certified by your doctor to maintain a Private Certificate. Type III medical only. Contact your local Flight surgeon.
I started using Ozempic last September to see if it would help with insulin resistance and it did. I was able to adjust basal rates and carb ratios in addition to losing weight.
I just started on Trulicity a month ago to help lose weight, it has worked with making me feel full after a small meal, lost 5 lbs. so far. I also use Afrezza occasionally for stubborn highs and am on Tandem CIQ pump, everything is working well together.
Only for a short time many years ago. T2 had been added to my T1 dx. The drug did help even out response to insulin but then the FDA revoked approval.
At least 20 years ago I was involved in a Mankind Inhaled insulin test. Us pumpers were pick because we had experience in charting. We were not allowed to Bolus, but we kept our current Basels. Mankind only had three fixed Inhaled does, 5, 10, 25-unit equivalent. We all had to have our lungs tested prior to and after testing was over. The Inhaled Insulin testing went on for a month. Needless to say, the stuff was a failure. Some of the partisan’s did have some minor lung problems. Very hard to control with limited doses that may be too weak or strong too.
Definitely seems like the origins of afrezza.
I have been taking Invokana for about 8 years with positive results. I also take Ozempic and use Afrezza. All three are crucial tools in managing my diabetes. I’ve been able to get tighter control and stay in range over 85% of the time.
Around 1960, at age 28, after about 7 years on the animal insulin [doing fine] my Doctor gave me some new pill to also take to see if helped.. We saw no difference, then after a few weeks, it was taken off market… I do not know what it was??
My doc put me on Ozempic and it’s been fantastic!
I have in the I past but it didn’t help anything so considering it could cause bladder cancer I didn’t stay on it for very long.
Yes! I am type 1 and lean (lowest BMI without being considered underweight) but incredibly insulin resistant. I have a PCOS diagnosis, which may be relevant. I was first prescribed liraglutude (and titrated up to 1.8) by an endocrinologist and diabetes researcher after spending years with huge swings that no amount of pump settings changes by my previous endos helped with. Metformin did not help. I tried taking no “type 2” drugs when insurance refused to pay, and my issues returned, leading to a small eye bleed. I am upset that many doctors are unaware that 2 out of the 3 mechanisms by which GLP-1 drugs are believed to work in diabetes are applicable to type 1 diabetics who have no detectable C-peptide levels. I now take 0.5mg Ozempic and am pleased with the control. I am very worried as I contemplate pregnancy, knowing that I have to stop this medication before TTC. I am also petrified that I will not be able to obtain this medication affordably in the future due to PBM formulary changes, and the price of these meds in the US. My doctors see the CGM numbers with and without GLP-1 meds in my case and the difference is night and day. It is so disruptive to be forced to start and stop them by insurance.
I used the first commercially available inhaled insulin – don’t remember the name. It was bulky as all get out & was short lived. Tried Metformin for my insulin resistance but it left me with terrible stomach discomfort so it didn’t last long. Successfully taking Rybelsus and now ready to try Mounjaro! Have been able to reduce my daily insulin by 40% and have lost 30 lbs in the past 5 months!!
Not at the same time. But I was misdiagnosed as T2 and put on T2 drugs until I asked to go on insulin because the drugs were not controlling my blood glucose.
Answered no, but am super intrigued about inhaled insulin. I am going to ask about it at my next appointment!