I have been diagnosed with type II three weeks ago and have started taking long acting insulin and a pre meal insulin. My numbers have been really good according to my nurse. I shared with him that they are running from 65-85 at best. He checked my meter because he thought I was faking the numbers. Probably because three weeks ago I was in the ICU for Diabetic ketoacidosis. I had never had issues prior to this. So the nurse is talking about my numbers being so "normal" ranged trying some meds no needles. Metformin and Actos. I have heard that Actos was banned in France and Germany due to potential side effects like congestive heart failure and bladder cancer. This scares me a bit and was wondering if anybody has any opinions or exposure to Actos. I want to get away from the needle as I climb mountains and packing insulin and needles sounds difficult as you cannot freeze it I hear but bladder cancer or heart failure sound worse.
I was first diagnosed as a type 2 back in 2005 at the age of 42. The doctor then started me out on Amyrl. That worked good for about 2 years. Doctor then added Metformin, stayed on that taking various doses until about 3 weeks ago.
Another doctor added Actos along with the Metformin and a higher dose of the Amyrl. I did find that Actos caused me to gain weight, no matter how hard I exercised and ate right. I do wonder if the Actos did do some damage to my heart. I am having to see a Cardo in a few weeks about some issues that was discovered with my heart.
Then about 2 years ago, Tridjenta was added on top of the other meds. After that was added, I started having symptoms like I was coming down with the flue. Even during the summer. Felt very tired, weak, headaches, etc. Then back in April my new doctor took me off all those meds except for the metformin and started me on insulin. About month in on the insulin, I started to lose weight and felt like my old self again. Lost about 35 pounds since the first of the year.
After the new doctor did some blood work, I found out recently that I am not a type 2 but a type 1 or a LADA. Doctor is going to put me on insulin pump, hopefully by the end of this month. Yes, the claims on Actos does sound scary. Like damn if you do, damn if you don't. Have you thought about an insulin pump?
I cannot take Actos and I have had a bad reaction to it...or side effect. It would cause fluid to build up. My ankles would spill over my shoes like any heart failure patient and I would get short of breath. I felt I was going to die if I continued to take it but there are some people who have no side effects. I prefer Janumet which has Sitagleptin and Metformin (spelling errors I am sure).
Actos and Avandia are a class of drugs called Thiazolidinediones or TZDs. The main listed side effect as 1DebY notes is water retention (edema) which occurs in less than 5% of patients (according to the prescribing information). The big controversy with these drugs occurred when post market surveillance studies seemed to show that Avandia was causing increased CVD risk. Some people felt that since Actos was in the same class that it probably had the same problems, but the analysis of the data at the time seemed to show that Actos actually reduced CVD risk. At the time, the FDA put what is called a "black box" warning on Avandia. The FDA insituted a more comprehensive post market surveillance program and recently reviewed that data, deciding that things weren't as bad as initially indicated. And in November of last year the FDA removed most of the restrictions on Avandia.
All drugs have certain risks. Avandia and Actos have millions of person years of data now, neither of them are likely present a major risk and Actos was never found to have those CVD issues. I took Actos even after Avandia was restricted. I recognized the edema issue and decided that I was aware enough that I could see if I was accumulating water. And I never considered the bladder cancer a serious concern.
Every drug comes with certain side effects. If they didn't then they wouldn't be a drug. I think we all worry about serious adverse consequences, we cannot trust Big Pharma to take care of us and the FDA is relatively powerless. So I am always a little leery of new drugs on the market, but Actos has been out there for enough time that we have accumulated experience to have more confidence in those adverse effects.
Hope that helps.
ps. People do all kinds of activities with their insulin. There are ways to accommodate bringing your insulin and keeping it safe on your Everest expedition should you choose to do that.
When you mention weight gain was it lots of weight or just a few pounds? I guess I could deal with a few pounds but 10-15 might drive me crazy. Thanks for responding I think I will go through with it and just monitor like crazy to make sure I am not wrecking my machine any more than it already is. Thank you once again.
Thank you for replying it is much appreciated. Janument is that for insulin resistance? This seems to be the issue my nurse suggests is happening for me. Call me crazy but my blood sugars since coming out of ICU have been anywhere between 65-85 so to me it seems like the sugars are being absorbed but I trust and follow the nurses direction as he is a type I so I figure he is more than just a medical person he is living with the issues.
I have been told you can take care of your insulin anywhere you go but my bigger concern is that most guide companies that take people on climbs typically don't want to deal with such an issue. Then you hope to find those that do and then my concern is how careful are they or do they just take anybody to make a buck. I have noticed that on sat and sun when I typically don't work out (free weights and treadmill)My numbers are always slightly higher. Is there a point where you think it might level out work out or no work out or is it just going to be. The weekend increase is usually 10-20 points which usually results in a 90-110 result. Also they are currently weening me off the insulin to start taking the pills. They said not to worry it might jump a little bit until I start taking the Actos. I am trying really hard to get my A1C down to under 8 (its a ten right now) because they suggested I might be able to then remove the Actos and just use the Metformin. *fingers crossed*. Thank you Brian for replying it is much appreciated. This is all so new and I want to conquer this best I can for the best results and I promise I will never go to ICU again worst experience ever. The people took great care of me but ugh.
Mountain Man, welcome to TU!!
I have been diagnosed with type II three weeks ago
three weeks ago I was in the ICU for Diabetic ketoacidosis.
Check out melitta's excellent posts about late onset T1, if you haven't done so already.
I can't speak to major treks/expeditions, but I expect insulin pens can be placed at the right layer of clothing/sleeping bag for reasonable temp control on, say, a 5 day trip. A frio wallet inside layers might work well. Maybe more of a problem opening layers to inject...brrr.
Thank you for the information. I appreciate it. I ordered a Frio Wallet it seems like it will keep cool and potentially warm in cool climates. A couple of Melitta's posts seemed helpful lots of Type I info but I still found some useful stuff. I never really realized this is an autoimmune issue. Sooo much to learn. I will just have to learn to control it and become the poster boy for Diabetics and the extreme things we can do. Maybe even pictures of my next climb with my pens in hand. I am sure there are already poster boys and girls but another cannot hurt. I am learning slowly we are a capable people just like everybody else just have to manually work our levels whereas others are on auto pilot. Now pass me a bionic pancreas. hehe. Have a great day and thanks once again.
I had a weight gain about 25lbs while on Actos. I noticed I lost about 20lbs since coming off the meds back in April. If you haven't, check out Melitta's page. She has some good information about LADA or type 1.5 diabetes.
Yes, pix of your climb, please!
Thiazolidinediones are not good for T1s. Have you been tested for autoantibodies?
Well, actually it is more complicated than that. Certain medications approved for T2 use are not good for T1s (such as sulfonylureas), but many T2 medications actually may be quite useful for helping T1. Metformin and the TZDs have been found to help T1s with insulin resistance. Also Byetta, Victoza and now Bydureon have been found helpful in T1 addressing digestion issues and helping with weight.
Nonetheless it is always good to try to get a full battery of tests to do a reasonable job of getting a specific proper diagnosis.
Brian, please pardon me. I posted in haste early in the morning. Thiazolidinediones and sulfonylureas both involve sulfur. Other than that I was mistaken. Thank you for the correction.
About four years ago, I was admitted to the hospital with congestive heart failure. Since I was on Actos, they took me off of it. I have not had any heart problems since. My Endo says the feeling now is that the problem goes away with time off of Actos. My cardologist (sp) does not find any problems with my heart now. I personally do not trust Actos.
Hi Mountain Man: Have you considered that you might have been misdiagnosed? DKA, in the ICU, put on insulin immediately--that sounds like Type 1 diabete to me, not Type 2. The way to test for Type 1 autoimmune diabetes is autoantibody testing, which I discuss in this blog.
Thanks for replying Steve. They told me since I have no history I should be fine but to watch for swelling in my ankles. My only fear is that something would happen right away not slowly or gradually. I think I am willing to try as long as I have a chance to notice any issues and get off the drug right away. I went to ICU in the snap of fingers it was not something that slowly crept up on me. That is my biggest concern. Did you have some warning signs or just one day straight to the hospital out of the blue?
Being put on insulin right away I was told was to slowly lower my blood sugar so as to not wreck my brain. I was told dropping to quickly was a dangerous thing. The one thing I did not mention was that maybe a month ago I had pancreatitus (sp) they found that my cholestrol (sp) levels were around 6000+. They told me pancreatitus was a fats and cholestrol issue. I do like meats grilled or baked ugh lots of protein but now something I am curbing. I am thinking the issue of blood sugar being out of line was probably due to that issue and am hoping with some careful work I can get to just using Metformin. All my blood sugars since I was released have been pretty good I have not typically gone over 100 even. Then right after I was released one week later I was sent in for labs. They said my liver my kidneys and pancreas appeared to be in order. Doc even gave me an attaboy for the good numbers. If you can think of a specific test or level I have the test results here. I can share the numbers with you. Remember the 6000+ it was now showing at 145 and they like it to be lower than 157 I think it was. No sugars in my urine. The doctor was really pleased with the results. My nurse is a type I so I feel comfortable with his knowledge but am always looking to learn from the many. He looked at my log and did not believe it so soon after being in ICU but they told me what to do and I follow it to the letter and I am an avid hiker climber camper canoeist and at home I hit my treadmill and my free weights 5 days a week. This type of information is what prompted my nurse to set me up on 1000mg of metformin twice a day and he has had me lowering my lantus 2 points per day based on blood sugars lower than 90. He suggested we are shooting for a norm of 90-120 and then they will put me on Actos with the metformin. I was on 35 units of Lantus and meal time insulin when they released me. Today I am down to 20 units of Lantus as of this morning and have not had to take meal time insulin. The reason being is my nurse suggested that if I top 150 to take some mealtime insulin. The fast acting stuff. It seems as if as they ween me off the needle I am holding and not jumping into dangerous territory. Also something I noticed was I missed my metformin pill last night and today at breakfast my blood sugar was about 100. A little higher than my usual 65-80 spread. So I think the metformin is working but could be simply clueless. This is all so brand new to me so I am trying to follow my nurses orders to the letter. This nurse is part of a diabetic clinic that deals with diabetics and nothing else. I even count carbs and have no more than 70 per meal never a carb over. I am blabbering on so I will quiet down and listen for any advice you have to offer. I am very appreciative for your help your knowledge and kindness. Thank you.
Friday evening, I had trouble breathing when I went to bed. I slept semi reclined in my recliner. Saturday morning, I was still having trouble breathing and a heaviness in my chest, so I had my Wife take me to the ER. Diagnosis was CHF caused by Actos.
This is just my personal opinion but each person with diabetes has to be active in their own treatment with monitoring glucose levels, recording food intake, learning to count carbs and learning about meds both pros and cons as well as their reaction to them. Getting a good Endrocrinologist to work with is essential. I started off on oral medicines and that held my levels for about 4 years. The 5th year I was sick with high glucose levels that was uncontrolled and rapidly growing higher as time passed. Insulin had to be adjusted almost weekly, starting with Lantus and me recording my levels. I then was given Apidra which gives me control to bring glucose down at meal intakes. Being active, can cause my levels to drop fairly quickly so I keep Skittles in my pocket or glucose tablets while at work. When on trips, I have a refrigerated pack for travel but there are many active people on insulin that find a way to maintain their activities and keep insulin with them. I know insulin inserts and testing strips say to keep the temps below 88 degrees.
I'm sorry to hear about your experience. I frankly don't trust any drug and I don't trust any doctor. I've been personally harmed by drugs and I appreciate your story. Before starting Actos, I read the information on it and was aware of the side effects. I paid attention to see if I had fluid buildup. An easy test for this is to press down on your shin. If you can make a depression and it remains after removing pressure you have edema. To a certain degree we are all vulnerable to edema, insulin can cause edema and even CHF. It is my understanding that TZDs when taken with insulin further increases the risks of edema.