the worst

By chemistlover Latest Reply 2012-02-15 10:47:20 -0600
Started 2011-08-03 10:31:46 -0500

what was the worst diabetic medication you guys taken

74 replies

Wildog 2011-09-19 20:08:27 -0500 Report

Aloha chemistlover, I think the worst diabetic medication I ever used was Lantus insulin. It would make me have low blood suger episodes in the really early mornings and then my blood sugars would go through the roof. After 2 months I stopped using it ans had no more problems and got my sugars under control with a week or so.

kitkat1955 2011-08-08 11:07:06 -0500 Report

ACTOS! I took it for eight months and gained 35 lbs…even though my eating habits hadn't changed. It also caused occasional bouts of edema, but in the last 45 days it got horrible…both feet looked like vienna sausages (someone described it that way and it's so appropriate!) and I could barely walk. The swelling went all the way up beyond my knees and my hands were also effected. I finally got my doc's attention and he switched me to Onglyza, which is MUCH better. I also was losing hair like crazy on the Actos, which has started to diminish - yeah!

I take divided doses of Metformin, but have never had any problems with it. Thankfully…

MrsCDogg 2012-02-15 09:06:41 -0600 Report

I have been taking Actos for a while now. I also have the problem of my feet and legs swelling. Maybe I need to talk to my doc about changing me to something else too.

kitkat1955 2012-02-15 10:47:20 -0600 Report

MrsCDogg: I was on it for about 10 months and the last five or six were miserable. It DID keep my morning numbers under control, but the trade-off wasn't worth it. Subsequent to my last post, I've stopped the Onglyza too (insurance didn't cover it) and I'm a little hesitant to try the Januvia…upped the Metformin to 2,000 mg/day (1,000 morning/1,000 night) and trying to maintain on that med alone. I guess I'm lucky in that it causes me very little gastric upset and I'm wary of any of the newer 'designer' drugs after the Actos nightmare.

Another concern is the bladder cancer / pancreas issues they're discovering with Actos. I'd seriously consider discussing this with your MD.

GabbyPA 2012-02-15 10:06:12 -0600 Report

That is what happened to my mom when she was on it. She had to use special creams to help with her skin because it was getting so stretched. Once she was off it, no more trouble.

6nyahs 2011-08-08 10:17:15 -0500 Report

Byetta made me so sick that my best friend didn't recognize me when I picked her up at the airport. I've taken metformin for 20 years and hate it but don't know what else is out there that is better.

2012-02-14 19:40:36 -0600 Report

Believe it or not, it was insulin. Due to the fact that it almost killed me.

Armourer 2011-08-06 14:36:45 -0500 Report

metformin, after several years of taking it was destroying my kidneys & liver. Stopped taking and things went back to normal in a year.

2012-02-14 19:45:11 -0600 Report

Thank you Armourer. I've been on Metformin for 17 years now. I had no idea that it could destroy my liver & or kidneys. Thanks. I'll get them checked out next time I see my Dr.

MrsCDogg 2011-08-06 09:09:22 -0500 Report

There are two meds that I would rather be whipped than take ever again. First one is Byetta second one is metformin. Both of them made me sick the entire time I took them. The metformin for a longer period of time. It didn't do me too bad at 250 mg. But once the dose was raised to 1000 mg it was Katie bar the door! There were lots of times when I couldn't eat because of that stuff! If another doc ever tries to get me to take either one of those meds I will very politely tell them to go pound sand!!

GabbyPA 2011-08-05 07:52:59 -0500 Report

Right now, my metformin is troubling me some, but not enough to stop taking it. This discussion is very eye opening. Good to hear what is out there, so if your doctor starts to prescribe you something, you can ask them or let them know your concerns.

peewee0618 2011-08-06 14:30:42 -0500 Report

My doctor changed my medicine to Jauvnia. I felt that I was losing a lot having to run to the bathroom every time I took the pill and I was taking it twice a day. My doctor told me that it was supposed to work that way. This was my internal medicine doctor. I still see him as my internal medicine doctor but I now have a diabetic doctor.

jayabee52 2011-08-05 07:58:57 -0500 Report

Well actually you can refuse to take it if you have big enough concerns. There were times I didn't fill a prescription because I looked it up and felt the risks outweighed the benefits, and went back and asked Dr for something else.

GabbyPA 2011-08-05 08:16:13 -0500 Report

Yes, I have done that with statins. My doctor keeps insisting, and I keep telling him that it destroys my muscles and gives me horrible leg and foot cramps. He just keeps on trying and I just keep on saying no.

Armourer 2011-08-06 14:41:27 -0500 Report

I'm beginning to think that statins is what is causing my lumbar problems for the past seven years or so. Started with a little spot I could push and it was fine, now it encompasses my whole lumbar area and makes it where it is hard to stand at the sink and brush my teeth, yet alone exercise or walk more then a quarter of a block.

RAYT721 2011-08-04 20:09:33 -0500 Report

Another vote for "the worst" is given to Metformin which comes from this crazy middle aged Type 2 guy from Ohio. I ended up in the hospital with chest pains last weekend. Because of the severe stomach upset from Metformin I was told to stop. I guess it wasn't the chest but rather the stomach acting like chest pain. A few days after I stopped I was back to "normal" again.

Now, I wasn't prescribed Metformin to bring down current glucose issues but rather as a "preventative" measure at my request. Well it was a flop. I am still under control without it but it's a med that I won't be "trying" again… EVER!

2011-08-04 20:03:32 -0500 Report

Any type of synthetic insulin. It drops my #s to the point of calling the paramedics. So I can only take oral meds.

SlatonLeo 2011-08-04 18:49:17 -0500 Report

I have not taken anything but metformin, but stopped because it would to my dizziness, and I felt lousy. It is bad enough my BP meds and omeprazole for GERD makes me dizzy and tired, thhe metformin made it 3 times worse. I was so bad I stayed in bed most of the time. My doctor got upset because I stopped without telling them, but they did not want to see me for another 3 months. The community clinic I go to is not very patient freindly anyway. I am rtying to control BG by diet and some exercise now, it has helped a lot too. Yes and I decided to find another doctor too.

Juno's Mom
Juno's Mom 2011-08-04 07:55:14 -0500 Report

Byetta. I adjusted to it after a couple of weeks (weeks of extreme nausea and unable to function properly because of sickness…), but then forgot to take it just one time. When I tried to start back the next day, the nausea started up again. I stopped taking it and doc suggested trying lower dosage. That didn't have any better results and we decided this just wasn't the treatment for me. LOL.

MrsCDogg 2011-08-06 09:15:48 -0500 Report

I only had mild nausea for the first couple weeks. Then the nausea started getting worse and then the laxative effect kicked in. I was even incontainant on one occasion!! I will never take it again.

Type1Lou 2011-08-04 07:43:22 -0500 Report

Avandia…when I first moved to Florida, my new GP added Avandia. I had been taking NPH shots for my type1 since 1976. I was a bit confused about this but his explanation was that sometimes, as we age, us type 1's also become insulin-resistant. (Souded reasonable but I was still skeptical.) Within 10 days, I had a severe low BG which landed me in the ER…stopped taking Avandia and eventually went on MDI of Lantus and Novolog. Why am I still seeing this GP????

Genaveeve 2011-08-04 14:58:45 -0500 Report

I forgot all about Avandia, it was one of the worst medicines too, besides the Metformin, I think Avandia contributed to my edema, when I took myself off the Avandia my edema became much better and managable

George1947 2011-08-04 03:19:51 -0500 Report

Actos… severe edema and other nasty side effects…

kitkat1955 2011-08-08 11:03:22 -0500 Report

AMEN to that! I had HORRIBLE edema on Actos (not to mention the weight gain and hair loss!) and finally talked my doc into switching me to Onglyza. Doing great now. Lost 9 lbs. of water weight and starting to lose some 'real' weight, and it's only been 2 weeks!

MrsCDogg 2011-08-06 09:17:52 -0500 Report

I have some swelling from Actos too. I am also on Norvasc for blood pressure and my doc says that the swelling is from the Norvasc and not the Actos. I've been on Actos before and I know what it does to me so next time me and doc are gonna have a talk about some of my meds.

George1947 2011-08-06 20:48:04 -0500 Report

From my experience Actos is one culprit in the swelling and edema and if you take another med that also causes edema, you definitely need to switch meds.

Good luck with your doctor… :)

Gimpalong 2011-08-04 00:35:02 -0500 Report

Next to Actos, I'd say that Byetta was really the worst for me. In a week I lost 37 lbs., had a severe pancreatic attack which landed me in the hospital. It was such a severe reaction that now my pancreas hardly makes any insulin. I was allergic to it to say the least.

edvel54 2011-08-04 00:29:36 -0500 Report

Byetta..It made me sick about 1/2 hour after taking it. I tried a lower dose and the same thing happen

Gimpalong 2011-08-03 22:27:40 -0500 Report

The worst medication was Actos. It kept my bg's under control, but it caused me to gain 100lbs. I don't want to ever go through that again. My weight went up along with my blood pressure and heart palpations. Things leveled off when I was able to get off of it. Nancy

MrsCDogg 2011-08-06 09:21:27 -0500 Report

I went on Lantus back last October. Along with that the doc I had then put me on a higher dose of metformin which was 1000 mg. Then earlier this year I was put back on Actos and Januvia. They work great for controling blood sugars. However, I have also gained a BUNCH of weight. I hate this too!!

Juno's Mom
Juno's Mom 2011-08-04 07:58:41 -0500 Report

So glad to read your comments. I have been on Actos for about a year now and could not understand why I couldn't lose weight. Even my Mom commented on the fact that I don't eat like a "heavyweight", but still the weight won't budge. I guess I haven't talked to my doc about it because it has done such a great job in keeping the bg's down, but is it worth it??? That's a no-win battle!

kitkat1955 2011-08-08 11:13:30 -0500 Report

YES! It's worth it to talk to your doc…I knew Actos was causing me to gain weight, even tho my eating habits hadn't changed, but because my BG #'s were better, my regular PCP didn't want to rock the boat. But I got a 2nd opinion from one of my doc's partners (due to severe edema) and he switched me to Onglyza and I'm one happy camper now. Lost 9 lbs. of water weight within 4-5 days and now I'm actually starting to lose 'real' weight. Please talk to your doc about finding another alternative…there's loads of options out there and most doctors have a sample cabinet they can use until you find the right combination for you.

Mickie G
Mickie G 2011-08-06 06:30:20 -0500 Report

I was recently taken off Actos and my swelling is better but now my #'s are out of wack. My PCP sent me to a specialist and because he disagrees with what she want me to take and her ideas for my treatment plan she now says he doesnt know what he is talking about. So does that confuse anyone else? Anyway Im sure with the specialists help I will find something else, cuz I dont think Actos is worth it! Weight causes so many other problems that in the long run makes taking care of yourself let alone your Diabetes and your loved ones nearly impossible, at least that has been my experience.

purple1900 2011-08-03 19:45:31 -0500 Report

I'm allergic to metformin so that is the worst one for me I broke out on hives all over my arms until they figured out what was causing them. I am also on a bipolar med that is known to cause hives so they stopped that one first and then figured out it was the metformin. I also lost handfuls of hair everytime I took a shower on metformin. Now I am on glipizide twice a day

valerie greene
valerie greene 2011-08-04 14:32:12 -0500 Report

Question? When you figured out the metformin was the cause did you experience burning and red spotches and severe itching while taking the metformin

purple1900 2011-08-04 14:59:50 -0500 Report

I don't remember burning but my arm would be fine one minute and then the next be covered in hives and I itched so much I would draw blood from scratching in my sleep. I had to cut my nails all the way down. Benadryl was my best friend and even then I still had problems with the itching

valerie greene
valerie greene 2011-08-04 15:41:03 -0500 Report

Thanks bc my Dr put me on allgra and I have been on this metformin now for 4 years and I really don't know what this has caused to my system as a whole.

jladytiger1979 2011-08-03 20:14:37 -0500 Report

OMG! That's terrible!!! I feel ya on the hair thing. Handful in the shower every morning. Then I leave trails of it everywhere I go…

jayabee52 2011-08-03 19:37:53 -0500 Report

I have to say the Met was the worst med for diabetes I have taken. I didn't have any side effects like so many have reported, but Met damaged my kidneys so that I had to be on dialysis for about 10 months, and now 6 years later my kidneys are so weak I am about to go back on dialysis permanently. (or until I get a transplant)

jladytiger1979 2011-08-03 20:19:11 -0500 Report

Holy cow!!! I had NO idea it even caused side effects like that!! Explains why the doc is watching my kidneys (besides the regular diabetic checks) cause I'm on such high a high dose because of the PCOS too…jeez

jayabee52 2011-08-03 20:27:22 -0500 Report

Well I figured out that my pancreas was putting out enough insulin on its own that I stopped taking my baby dose of NPH insulin to try to control my diabetes without diabetes meds. I eat a low carb, high protein meal plan. It has seemed to be working for me. Keeping my BG's close to normal levels, and have lost weight, and my most recent A1c (May) is 5.5!

Gimpalong 2011-08-03 22:30:58 -0500 Report

Congratulations! I'm so glad that things are working for you. I hate that you're having to go on dialysis permanently. I am still praying for you. Have a great week.

jayabee52 2011-08-03 22:38:19 -0500 Report

Thanks Nancy! I need all the prayers I can get! My friends are already urging me to try for a transplant. If I know my sons, at least 2 of the 3 of them would offer one of theirs, but I would be reluctant to take one from them as I don't want to harm themselves down the line once I'm gone. I am somewhat fearful that they will have diabetes later in their lives too.

jladytiger1979 2011-08-03 20:33:27 -0500 Report

Well you've done a great job. Trying to shift to that kind of diet with plenty of exercise but every time I try to cut back my carbs I get dizzy!!

Gimpalong 2011-08-03 22:32:50 -0500 Report

Hey, your suggestions with the high protein and low carb is working. I like it. I've lost 12 lbs. in 2 weeks. Thanks for your information. Keep cool, if you can find it. It's terrible here. Nancy

Genaveeve 2011-08-03 18:22:23 -0500 Report

metformin was the absolute worse, the side effects were horrible but Im not sure if it was worse because I have no gall bladder, Im not sure how all that works so I took my self off and then my endochronologist has me on Actos and Glimperide and then I do insulin at night with the long acting lantos

jladytiger1979 2011-08-03 16:17:56 -0500 Report

Only ever used metformin. It has some rough side effects to start but not much now except I think is making my hair fall out. I feel lucky considering.

Genaveeve 2011-08-04 14:55:47 -0500 Report

omg that could have been what was happening, never thought of the metformin having that side affect, but my hair is fine now and Im not on the metformin anymore

purple1900 2011-08-03 19:43:44 -0500 Report

metformin made my hair fall out I went to get it cut and the lady that cuts my hair asked why it was falling out so much and I told her it was metformin

Gimpalong 2011-08-03 22:34:30 -0500 Report

Did you have your thyroid checked also? When my dose is too low, my hair starts falling out. Just curious.

purple1900 2011-08-03 22:52:22 -0500 Report

I'm doing good now since they quit the metformin but I get blood work all the time because of a bunch of different meds I'm on

jladytiger1979 2011-08-03 20:16:26 -0500 Report

I'm afraid to cut my hair. Might see the scalp!! Same reason.

purple1900 2011-08-03 20:31:53 -0500 Report

I cut my hair short for the summer Its an a cut so its shorter in the back and longer towards the front. I am blessed that as I have gotten older my hair has gotten thicker which is why it is gone now for the summer

Genaveeve 2011-08-04 14:57:32 -0500 Report

yeah same here, my hair is the healthiest that its ever been, but i take a multi vitamin with extra B, eat plain yogurt almost every day and raw veggies, I eat my favorite foods too, just not every day

Jim Edwards
Jim Edwards 2011-08-03 15:49:22 -0500 Report

Metformin, but only because of the smell, upon taking it and upon peeing it out! Worse than asparagus! (The difference being that I love asparagus)

jladytiger1979 2011-08-03 16:19:20 -0500 Report

OMG!! never had that happen but I had diarrhea that would put e coli to shame!!!!

MissPuff 2011-08-04 09:37:38 -0500 Report

I've only been on one diabetic med - Metformin, but it was a horrible month for me. Metformin caused terrible diarrhea for me also. I started at 1000 mg & my doctor cut it down to 500 mg. I couldn't stay away from the bathroom more than 5-10 minutes. Finally, I started pouring bright red blood from my rectum & my doctor stopped the metformin & scheduled a colonoscopy. The bleeding stopped when the metformin stopped, so my doctor cancelled the colonoscopy. I now control my diabetes with diet & my BG levels stay level unless I have an infection, get really stressed out or have a lot of seizures in one day. My doctor doesn't want to put me on another med if she can prevent it since I am highly sensitive to meds.

Brynne 2011-08-03 17:03:53 -0500 Report

when I first started medformin, it gave me diarrhea too, but then my Dr. had me cut the dosage to 500mg vs. 1000, and then gradually build it back up to 1000x2 per day. Now I don't have any problems.