Actos and edema

kitkat1955
By kitkat1955 Latest Reply 2015-03-28 12:12:47 -0500
Started 2011-07-22 21:32:54 -0500

I've been suffering greatly the past three or four weeks with severe edema in my legs/feet and hand/arms. My feet are so swollen I can barely wear shoes. I'm limited to one pair of (what used to be very loose) sandals. My ankles are so swollen they look broken. My doctor ran tests to ensure my heart and kidneys were functioning correctly and the test results were all comforting. They put me on 20 mg. Lasix, which did NOTHING, so it's been increased to 40 mg./day. Urinating a little more from the time I take it in the morning until about 11:00, but still not enough to clear the edema. But it's been SO PAINFUL that I got a second opinion from another doc today. He said that Actos can cause edema. News to me! I've been on 30 mg. Actos/morning and 500 mg. metformin/morning, 1,000 mg. metformin/evening since my diagnosis last October.

I was anxious to get off the Actos because it's caused me to gain 30 lbs. in the past 8 months, so I think this was a nice gift. Doc put me on Onglyza instead (with the metformin). Really hate changing meds, but I'll give it a shot and see how it goes.

Anybody have adverse reactions to Onglyza?

He also wants me to switch to a low-fat vegan diet (as prescribed by Dr. Neal Barnard). Not surprising, since my doc is 7th Day Adventist, but I'm pretty desperate to feel better, so I've ordered the book and will seriously consider it.

I've been on vacation this month, but I have to return to work on August 1st, so I'm praying the edema will be better by then…otherwise, I don't know what I'll do about shoes!! =)


45 replies

momgag
momgag 2015-03-28 11:18:52 -0500 Report

I was on Actos for 5 years and I feel like I was unknowingly poisoning myself. I had so much pain in my legs 24/7. I thought it was due to my spinal stenosis, the docs attributed it to neuropathy. I even had to go on disability and give up my profession of 30 years. Last spring my A1C was creeping up and the doc increased my Actos. I started retaining so much fluid, was very short of breath, had crackling sounds in my lungs, etc. I finally did some more reading on Actos and realized that I was well on my way to congestive heart failure. I stopped taking it the next day. Within days, the constant pain in my legs disappeared!!! I wish I could sue Takeda…I lost 5 years of my life because of this drug.

kitkat1955
kitkat1955 2015-03-28 11:35:58 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

momgag
momgag 2015-03-28 12:12:47 -0500 Report

After I stopped the Actos in Sept, I got the doc to put me on Victoza. (I also take glimiperide and metformin.) Since then, I've lost about 25 pounds, I have no pain in my legs so I'm able to walk and get some exercise. I feel better than I have in 5 years and my A1C is below 7 again. I did file an adverse event report to the FDA, too.

kitkat1955
kitkat1955 2015-03-28 11:35:53 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:51 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:50 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:35 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:26 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:25 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:25 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:23 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:02 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:35:01 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…sorry for your troubles and good luck for the future. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:34:23 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…good luck. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:34:18 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…good luck. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

kitkat1955
kitkat1955 2015-03-28 11:34:14 -0500 Report

So sorry, momgag. I feel so strongly that Actos is a terriby dangerous drug that I submitted an adverse reaction report to the FDA. I am also a strong proponent of taking responsibility for my medical care. While I know my doctor is the expert, nobody knows my body like ME, since I live in it 24/7. I am blessed to have a doctor that truly LISTENS to me and works with me to get a satisfactory outcome. I had to go off the Onglyza because my insurance didn't cover it and I couldn't afford it on my own. Since my original post, I lost 45 lbs., but gained it back due to financial reasons (eating healthy is expensive!). Now I'm back on the wagon and trying to eat healthier, and my doc recently put me on Glypizide. It's doing wonders for my glucose readings, but now I have pretty regular episodes of hypoglaucemia. Learning how to deal with this new wrinkle…good luck. Keep an eye on your kidney/bladder function. Actos has been proven to cause bladder problems…

irisrose25
irisrose25 2011-07-25 11:46:29 -0500 Report

I was on Actos for awhile and it caused me to have swelling in my legs, feet, and hands. I also gained weight on it and was short of breath.

awilli13
awilli13 2011-08-07 23:55:35 -0500 Report

I agree that Actos is a very bad medication shortness of breath and weight gain does not match…I gain so much weight around my abdomen that i look 6-7 mos pregnant. The sad part was that my doctor felt like i should have stay on it though it kept my sugars at bay… ACTOS WILL KILL

kitkat1955
kitkat1955 2011-08-08 10:50:16 -0500 Report

I also noticed a significant weight gain around my middle. All my life I always had more of an 'hour glass' shape, even when I was overweight, but now I look pregnant. I know that abdominal weight is bad for one's heart, so I hope the switch to Onglyza will help me lose that…

aneibe43
aneibe43 2011-07-24 19:39:36 -0500 Report

i don't know what edema is, but i also get swollen feet. it's hard for me to wear closed shoes. when i wear my sildes my legs hurt the next day. i find it very hard to walk the next day too. any help would be nice.

kitkat1955
kitkat1955 2011-08-08 10:55:17 -0500 Report

Do you take Actos? Or blood pressure pills? I must be prone to it because I had this problem with all three of my pregnancies, but I've found long-term edema (swelling of the feet and/or hands) is always caused - for me, anyway - by medications if I'm not pregnant. This first occurred when I was placed on meds to control my minor (140/90) blood pressure. The first 4-5 bp meds caused edema (although not quite as severe as with the Actos - and it took 7 months for this to become such a daily problem). Thru trial and error (and the use of samples - thank God for my understanding doc!), we finally found that Benicar (20 mg.) didn't cause my feet to swell. She probably should have realized that Actos would eventually cause the same problem, but then again, it's MY body and I should have done more research myself. Now that I'm off the Actos (on Onglyza 5 mg. instead), the swelling has reduced greatly, I've lost 9 lbs. of water weight and I'm finally starting to shed some 'real' weight. Hang in there…ask your doctor about ALL the meds you're on to see if that could be the problem.

AuntieBear
AuntieBear 2011-07-24 04:38:04 -0500 Report

You need to go to an eye doctor and have your eyes checked for damage. Actos causes something called Macular Edema which can cause blindness. If you are already having trouble with edema in other places, please have an eye doctor check your eyes.

kitkat1955
kitkat1955 2011-08-08 10:23:44 -0500 Report

Wow…thanks for the heads-up! I remember really seeing a decline in my vision before my initial diagnosis last October, but both eye exams (one very detailed) since have documented improvement. But I'll check this out. The LAST thing I want is vision loss! Thanks again…

awilli13
awilli13 2011-07-24 03:21:24 -0500 Report

I just want you to know that you did the best thing by getting off of ACTOS… this medication is deadly … in 2006 I was changed to this medication and i starting a serve leg swelling … then its started with weight gain to my stomach to the point it made me short of breath… I had to get lots of test for my heart cuz they thought it was a mild heart attack, never take this med. im taken something called Pradin which is a fast acting med 15 mins before meals Lantus 46units in the am and 500mg metformin. so maybe you want to ask your dr about these… If i could just found ways to lose weight i would be a happier person..

MrsCDogg
MrsCDogg 2011-07-23 17:43:57 -0500 Report

Are you on any other meds? I also take Actos and was on it before and it caused me to have the swollen feet and ankles that you spoke of. So now I am on Actos again. I am also on Norvasc for blood pressure. The last time I went to see the doc we talked about the swollen legs and feet and he said that it wasn't from the Actos but from the Norvasc. However, I know how my body responds to stuff I've already taken. It's a combination of the Actos and Norvasc. My ankles and feet are normally very skinny for a person my size. Now I have cankles! The longer I am on my feet the worse they swell too. Like you said the Lasix does nothing to decrease the swelling. Hang in there!

kitkat1955
kitkat1955 2011-08-08 10:32:55 -0500 Report

Boy, howdy…can I relate! I also had problems with extreme edema when I was first started on high blood pressure meds. In fact, that's when they first put me on Lasix (which didn't work then, either). Thru lots of trial and error (and a terrific doc who utilized samples to minimize the effect on my budget until we found the right drug), we found that Benicar 20 mg. did the trick of managing my minor BP issues WITHOUT the edema problem. Unfortunately, there is no generic for Benicar (yet), and it's considered a 'brand' name on my insurance formulary, so it costs me $45/month, but it's the only BP med we found that didn't make me swell like a blow fish. In the past two weeks, my doc took me off Actos and replaced it with Onglyza (5 mg/day) and wow! What a difference! He also increased my Lasix to 40 mg/day (with potassium as well), the 5 mg. Onglyza and 500 mg. metformin/morning and 1,000 mg. metformin with dinner. My number haven't been this good in MONTHS! Averaging about 110 @ bedtime and about 100 when I wake up. I actually lost 9 lbs. of water within the first 5-6 days and now I'm starting to lose some 'real' weight. FINALLY! Please, please impress upon your doctor the need to investigate more meds (hopefully with samples) because I agree with you…certain drugs and/or drug combinations, can have a drastic effect on us.

Good luck, Mrs. CDogg…let us know how it goes.

June Tademy
June Tademy 2011-07-23 16:34:17 -0500 Report

Now I am worried, I just now have control of my BS and now I hear about Actos in lawsuit with Avandia. Boy Howdy am I going to talk to my doctor on the 28th of th emonth. I do not have edema but I have certainly gained weight and the Doctor told me I would when he prescribed Actos. He did sugges that I try insulin but that also will put the weight on he said, but this is crazy. Always something

kitkat1955
kitkat1955 2011-08-08 10:33:53 -0500 Report

Ask about Onglyza or Januvia. I don't know enough about these meds to know why we're prescribed one and not the other, but it's worth asking…

MrsCDogg
MrsCDogg 2011-07-23 17:47:20 -0500 Report

My doctor is reluctant to say "yea all those diabetes drugs you take make you gain weight". He just hemmed and hawed around the issue the last time and told me that I needed to "try a little bit". Which kind of makes me mad because he just assumes that I'm not trying. So I just let it go and say Yea I will.

kitkat1955
kitkat1955 2011-08-08 10:35:00 -0500 Report

I know! The doctors all say 'lose weight and you might even be able to go off meds', but the darn meds put ON the weight!! Vicious cycle…

coffeecoffeecoffee
coffeecoffeecoffee 2011-07-26 10:03:53 -0500 Report

i hear ya. what a vicious cycle. chasing the next insulin shot to keep the BG down while the weight rises resulting in a need for more insulin…how stupid is this???

granniesophie
granniesophie 2011-07-23 16:34:15 -0500 Report

I think you'll see quick changes in the edema now you're off of Actos. I was on it too, and my poor feet and ankles swelled up so bad I thought they'd split open, and I had pain in my legs and groin so bad it hurt to walk. My doctor wanted to test me for PAD! But I stalled him and did my own research and found out that it was the Actos causing all of it. So… I took myself off the Actos, and within a couple of weeks I wasn't swollen or painful anymore and felt much better. Went back to the doctor (took me that 2 weeks to get an appointment anyway) and told him what was going on and he was okay with it.
Now I'm on Januvia along with the Metformin and Gliplizide, and doing good, except for the occasional low (those are such fun!) Now to tackle the Januvia and research that!
So, hang in a bit longer and let the Actos get out of your system and I bet you'll feel better soon. Keep me posted :)

kitkat1955
kitkat1955 2011-08-08 10:40:19 -0500 Report

GrannieSophie: You were SO right!! It's been two weeks and I'm actually wearing a different pair of shoes today for the first time! I was limited to one pair of flip flops for weeks because they were the ONLY shoes I could fit on my swollen feet (thank goodness my boss is understanding!). These are a little snug, but such a nice thing to see something different on my tooties! I lost 9 lbs. water weight within a few days and now I've lost 3 lbs. REAL weight. Not as hungry either. Another thing I didn't associate with the Actos was the hair loss (horrible…I dreaded combing my hair because it was falling out in such huge numbers, and washing my hair REALLY made it fall out - almost in clumps). But I've noticed a marked decrease in the hair loss, too! Woo-hoo! Now I'm on 5 mg. Onglyza (with the 1,500 mg. metformin) and the Lasix (40 mg. w/potassium) also seems to be working better, too.

Thanks for your encouragement!

RaleighDave
RaleighDave 2011-07-23 16:08:58 -0500 Report

Wow! I've talked to no one else that's a diabetic and I've also talked to no one on Actos. I told my doctor that I "KNOW" for a fact that when I am eating like a bird and go from 212 to 245 that it's the Actos. I was not getting my numbers down with 4 horse-pills of Metformin and my stomach was killing me. My doctor puts me on Actos and now I'm 102-103 almost every morning and having many low sugar experiences now where I have to be very careful at work. But, I really like the analogy of the ankles being "Vienna Sausages". I thought it was Tramadol that I was taking for knee pain exercising. Anyhow, I have personally made a decision to see another doctor, get my numbers down with just the Glipizide and ditch the Actos. Since I've been doing heavy exercise and have joined the gym, my numbers are coming down and I'M SURE THAT IF I STOP THE ACTOS I'LL LOSE WEIGHT. Thank you folks for helping my decision to ditch my primary care doctor and find another doctor that will listen to me when I say "Actos is causing me to gain weight".

kitkat1955
kitkat1955 2011-08-08 10:45:52 -0500 Report

Good for you RaleighDave! I think it's soooooo important to have a doc that really LISTENS to us. We live in these bodies every day (!) and know them better than anyone else. My usual PCP (who I've been with for over a decade and I love) was resistant to my concerns over the Actos, so I made an appointment with her boss and got great results. I hope she's not angry, but something had to be done. It's not that I was shopping for someone to 'agree' with me, I just needed to feel like my concerns were taken seriously and a true conversation occurred about my treatment. Emphasis on "MY TREATMENT". Let us know how it's going for you!

Mickie G
Mickie G 2011-07-22 23:19:17 -0500 Report

I was on Actos (30 mg daily) for 4 plus years. My weight kept going up and at times my feet looked like Vienna Sausages, my feet looked and felt like waterbeds. I recently started seeing the assistant of a new specialist and within 10 minutes on my first visit, he had taken me off Actos, adjusted my metformin and changed how my insulin dose was decided. I feel so much better. iI didnt need anything to bring down the swelling just more activity and elevating my feet while sitting. Actos has been added to the lawsuit against Avandia. I hope you feel better soon.

kitkat1955
kitkat1955 2011-07-23 00:16:14 -0500 Report

Wow. Your story sounds very familiar! Vienna sausages…yup, I think that's an apt description! I'd love to be able to walk more for exercise, not just to get from Point A to Point B. But until this swelling goes down, I don't see that happening. The edema also makes the outside edge of my heels burn like crazy…feels like all the skin has been scraped off. I notice it doesn't hurt so much when the swelling is less. And, to add insult to injury, I have Achilles Tendonitis, which makes walking painful pretty much all the time. I have to keep reminding myself to take one problem at a time…
Thanks for your perspective. I appreciate your support!

Mickie G
Mickie G 2011-07-23 05:39:09 -0500 Report

You are welcome! I have seen a remarkable difference since ive been off Actos. My older brother suffered a major heart attack after using Actos for many years. didn't understand the weight gain the swelling or any of the other problems that have resulted from my medications. I am still working on my treatment plan, but talking with others helps me decide the direction I want to go. Hope to talk with you in the future.

grandmaducky
grandmaducky 2011-07-22 22:12:00 -0500 Report

Sorry to hear you having so much trouble with edema. I read some place that the heat were having makes some people swell I just try to stay cool my problem is my feet itch and then i rub tell i have sores i am bad I did put foot cream on my feet today maybe that will help. Good luck finding your answer and i hope your feet go down before u need to wear shoes

kitkat1955
kitkat1955 2011-07-23 00:18:28 -0500 Report

Well, I'm from Central Calif., so summer heat is a given. Although we're surprisingly mild compared to the rest of the nation this year! We haven't had a day @ or over 100 in probably 14-20 days. Tomorrow, however, is another story. Supposed to get to 101 and we're moving. UGH. To top it off, the A/C in our new house just pooped out tonight, so it may be a miserable day tomorrow. I hope the foot cream helps you!