Have you been the experimental guinea pig with your meds?

Type 2
#1

I feel like a human guinea pig. I have faith in my ENDO but still this experimenting does not feel good.

I am taking alot of meds which I do not like at all. I have experienced all the side effects from them. They are having a decent affect on BS. I do try to take them properly but sometimes I am not able too. Working the night shift does make eating,sleep schedule, dosing a little difficult. I exercise and I work out with a personal trainer twice a week.

ANY HOO.....

Is there anybody else taking a lots of meds and injectables at the same time?

Is this normal? Is it possible for my body to start rejecting these meds and such.

Could all these meds make me feel dizzy? I have been having dizzy spells or lite vertigo for 3 weeks now.

If all of this doesn't "work" then what else is there?

Is it normal for a TYPE 2 to be on a CGM?

HELP!!!

#2

I have at times suffered serious side effects from medications that put my health at risk. My doctors were “deaf” to my concerns and it was only through self experimentation that I was able to prove that the specific medications were at fault. The standard way to test to see if an individual medication is causing an observable side effect is to perform a challenge test.

Go off the medication and see if the side effect goes away

Reintroduce the medication and see if the side effect returns

I would always recommend performing the challenge test more than once to confirm the results. You do need to realize that all medications have side effects, in fact if the medication had no effects it would just be a placebo. Sometimes, we need to deal with certain side effects in order to be able to enjoy the benefit from the medication. But in the end, you need to protect yourself. Not all side effects are a just a nuisance, some can place you at serious health risk. And my experience is that doctors downplay and ignore complaints of side effects and sometimes this can place patients at risk.

In my case, I am taking max metformin, Actos and Byetta for my diabetes. I take additional medications and a range of supplements, resulting in a fistful of pills in the morning. I have not experienced dizzyness. You do need to be alert, but being dizzy in itself may not be related to any medication, it may be your diet, weight loss, exercise or just a passing thing. Just keep an eye on things and write down in your log when you feel dizzy. Then look back and see if the timing is related to anything.

#3

first off there isn’t anything normal w/ diabetes what works for me may not work for you.

I’m on 4 meds for my diabetes. my endo likes to experiment too whenever I read about a new drug in the waiting room I’m pretty sure i’ll be on it by the end of the day. It all a matter of finding of what works on keeping your sugars down with minimal side effects. Byetta did an ok job keeping my sugars in check but I’d occassional throw up using it so we stopped. the 4 meds I’m on and my diet and exercise keep my sugars in control and I can live a normal life so it works. until the day my sugars rise then we throw out that plan and try something else. it’s all a great big science experiment

talk w/ your doc about the dizziness. that isn’t right. read the literature for your meds and seeif that is a common side effect. if not call your doc.

#4

Going on 12 years now since my diagnoses and been through it all.
I was on Insulin, Actos, now on Metformin. Each one has its own side effects and I echo bsc just do the challenge test and let the Endo know what works and what doesn’t.
The D will always be an experimental disease till you can streamline your management and am sorry to say that it might take some time.
by the way I had the dizzy vertigo feeling for a while and I was on Actos then, but it might not have anything to do with the meds, maybe a consequence of the highs.

#5

You do realize that 3 meds is pretty much the limit for most medication protocols (see http://www.aace.com/pub/pdf/guidelines/DMGuidelines2007.pdf). My impression was that there just does not seem to be much evidence that further medication is effective. The ADA is still arguing for a stepwise treatment plan, continuing to increase medication after medication, but I’m not so clear this is a good thing. In his 2008 Banting lecture, Dr. Ralph DeFronzo criticized this approach and instead argued that a better approach was to just put type 2s right on metformin, pioglitazone and exenatide. That was maximally effective and when that no longer worked, just move on to insulin. All the mucking around with medications just wasted time, keeping type 2s at elevated blood sugars, killing their pancreas and lining the pockets of big pharma. That being said, most type 2s (and some type 1s) who are insulin resistant can continue to benefit from insulin sensitizers even after starting insulin.

I’m glad that your 4 meds are working. Frankly, I’ll not take a sulfonylurea because of evidence that it will harm my remaining poor pooped pancreas. I’m also not too happy about my Actos given the observed higher rates of heart problems (I am watching for edema). I remain concerned about my medications, they have proven to be minimally effective (if effective at all) and I am vividly aware that there are risks in taking them.

#6

Yes, follow the advice of bsc, and by all means, if something is not working and you want to not do it anymore, stand your ground! Back in 2007, I was on a medication for depression which I felt was not working, and had horrible side effects… I pleaded with the doc to get me off of it, and he wouldn’t… I lost 40 lbs on it, because I wouldn’t eat on it, at all… and a I lost a huge amount of hair… and then he said I just needed to get used to it… and guess what? I had a seizure on it! It was awful. All medications are different, and not all will result in something like this… but they each have their own minimal serious complications. Never back down when stuff is not working for you, and you can document to them that it is not… You’re the boss.

#7

One thing you might try is to have two or three meters. I dont know if you do. I can feel absolutely terrible, irritable, dizzy and so on and my BG says I am at 100 but another meter says I am at BG 58. These meters are not accurate and you have to find one that meets your bodies signals. You mention that you have a CGM, how is that working? What is that reading when your having these spells?

As to the medications I always like to have the Dr prescribe the lower dose of something, and then work up from there. Sometimes the lowest dose works just fine and you eliminate much of the aggravation. Its a guessing thing for the Dr too to determine what dose you need. Just because you might be at a certain weight doesn’t mean you need a higher dose of something. You might want to advocate that when you are prescribed something new.

Lastly the papers that come with the prescription, dont throw them in the waste basket right off. Read them thoroughly so you know what side effects are for the drug or medication. Good Luck

#8

I am taking the max of everything you are taking with actos and levemir. I am taking a range of supplements too. I don’t remember being dizzy before the levemir. I have noticed that I loose my balance sometimes or i feel the room is slightly spinning. I have suffered from severe anemia twice in the pass 3 months so I know my hemoglobin is low. My doctor is checking it again. Because I have not been “compliant” with my meds she suggested the 3 shot of insulin a day. If levemir is causing the dizziness I can only imagine what 3 shots may do…

#9

I am not a cgm…I want to get on a cgm…My doctor knows I am lazy but I think it would work better with me since I work nights. Having to figure out times, sleep and eating is just stressful on me. I think the cgm would just allow me to focus on other things like my budding business without constant reminder of eating a pill or shooting up.

I am scientist by profession so I read on all my meds. the byetta is the one that concerns me the most since it is linked to pancreatic cancer. Patrick Swazye and Pernell Roberts both died with this.

My endo offered me chance to change to 3 shots of insulin a day. I thought this was good but then I thought wow more money…

#10

Actually, Byetta has been linked to some 30+ cases of pancreatitis. I am not aware any links to pancreatic cancer. The FDA now warns you about the pancreatitis. I am aware of the risks, am acutly aware of the signs of pancreatitis, but have generally felt that the risk is fairly low given that literally millions of people have used Byetta. Comparing that to the rate of side effects for statins which by some estimates is like 20% the Byetta risk seems pretty small.

Randy Pausch also recently passed away from pancreatic cancer. His book/lecture/film “The Last Lecture” is really quite inspirational.

Insulin would cost me less than my current medical regime, and my Byetta alone costs my insurance company more than a basic MDI regime.

#11

I have had all kinds of crazy side effects with meds. I am fortunate that I only have to do one pill. When I was on metformin and januvia my stomach was a mess and I was always throwing up after food to the point I did not want to eat anything at all. I told my endo and they would not do anything at all so I just stopped the pill on my own and at first took nothing but monitored my sugar. I then went back to just metformin. But I had to do this on my own, at that point I dropped that endo since I felt I was not getting anything for the money. I went to my primary and told them I would do metformin only and when that stopped working I was not going to try any other drug at all but I was going on insulin. I have been on insulin for a year with no side effects and I liked that so that is where I will be going to next if metformin quits. I see no reason to shoot up other drugs when insulin works fine with no side effects.

Also I have been fighting the battle for a cgm for a type 2 and its not happening. From insurnace perspective I believe you have to have a chain of lows before they would even consider a type 2 for a cgm and prove it. I think I was going low in the middle of the night but adrenaline quick would put me on normal. So now I test like every 2 hours. I am a software engineer but I decided that my glucose levels are more important that any thing that I am doing. So when days go long I wont go without food and I wont go without testing.

I would of taken the three shots and put all the pills in the trash but that is just me.

take care

#12

Oh, Christalyn, being on a lot of meds myself, it’s very hard to keep the regime going. I have three pill containers for each day, just to keep them straight. Not all of those are for my diabetes, but other maladies, too. Each time my PC adds a med, then I must ask my CNP if we can drop one of hers, or ask the psych doc if we can drop one of his.

I know that my psych meds do work as you said, that your body adjusts to it, and then you must do more, or do some switching around. So I can see why diabetes meds would be the same. And let’s face it, if they don’t work, then it’s back to square one.

As long as you have faith in your Endo…and remember to document any side effects and what is and is not working…communication with these people is vital.

Hang in there, it’s not rocket science it’s Christalyn and Cathy and et al science.