By runthe Latest Reply 2012-07-05 14:36:33 -0500
Started 2011-06-04 14:16:15 -0500

Hello all I hope that all is well with everyone. I would like to know if anyone is taking Actos. i am taking it an notice that my ankles and hands are puffy. The heat in chicago is hot and I went for a walk and now I am all swollen. Is this normal or should I worry. I notice that some day is worse than others. I take actos along with Insulin.

50 replies

Wound Lady
Wound Lady 2012-06-21 09:35:46 -0500 Report

Good Morning, I have had no trouble with my sugar till the doctor took me off Actos. He was afraid it would cause bladder cancer. I take Mediform 500mg in morning and Lantus 20 units in morning. Sugar is running 120-140 in the mornings and by noon back to 100 after noon the 2 hours it may be 152+. I have to cover if over 152 with novolog pin. By bedtime it is 120's if I don't eat. The doctor told me to start taking mediform at nite with my other pills. I have but it hasn't helped yet. A1c was under 6 now is 6.5. Any help or options would be helpful. I'm very aggressive with everything so I'm very disappointed that its not working. I refuse to let this get me down. Help.

jigsaw 2012-06-21 09:55:16 -0500 Report

I had very similar circumstances and similar results after stopping Actos. There are numerous approaches that might help. A 1/2 hour walk in addition to my normal routine helped the most. I also restricted my carb intake slightly, added Aloe juice ( inner leaf ) and Chromium with Cinnamon caps. Their impact and importance is in the order that I have written them. My bg management is now better then when I was on Actos.

Wound Lady
Wound Lady 2012-07-05 09:23:25 -0500 Report

Hey when you added Aloe juice was that in a cap or liquid? Blood sugar is less still working on it.

jigsaw 2012-07-05 14:36:33 -0500 Report

I buy it in liquid form. Walmart as per caroltoo's suggestion has a quality product at a good price. There are different sections of the Aloe leaf that are used to make the juice. The inne leaf or fillet is best for blood sugar control.
I have been using it for a few months with success! It is definitely stabilizing my blood glucose (bg) and has made it easier to lower my medications.

old biker
old biker 2012-05-23 08:29:13 -0500 Report

I was on Actos for 3 years and swollen ankles became away of life. I finally had my DR. take me off after reading all the negative press about Actos..Right now I am on metformin HCL and a once daily shot of lantus Insulin..This seems to working real well for me and no more swollen ankles

Carol2x 2012-04-07 04:41:50 -0500 Report

I was on it and glypizide ER for quite a while and yes, it did a job on my ankles and weight gain. I just started Januvia this friday and hope it helps me.

cavie2 2012-03-30 14:07:37 -0500 Report

I was on 45mgs of Actos per day for 8 months from July 2010 to February 2011. The other name for it is Piaglitazone and I never suffered from weight gain or swollen ankles or feet but I had massive hair loss. I am now getting back most of my hair loss but still have a way to go to get back to normal. I checked this out on the internet and hair loss is one of the major side effect of this drug.

jigsaw 2012-03-30 16:01:42 -0500 Report

I always had my doubts about that med. I had refused Avandia years ago because of what I had read. I was leary of Actos since it is the same classification of med. My doctor insisted it was reasonably safe, and still does. You know what my response is…@#$%^&, and not for me. I've cut my carbs and increased my exercize, and eliminated Actos a few months ago!

cavie2 2012-03-31 05:59:31 -0500 Report

Well that's nearly 14 months since I stopped taking it and I have spoken on a few conversations about the hair products that I have used for 15 months that have stopped hair breakage and started the hair growing again at a phenominal rate. If I were ever told to go back on that drug again I would refuse, having diabetes, testing BG, taking medication, insulin, watching carbs, eating food you don't really like, doing without food you do like,etc., is hard enough without having to put up with severe hair loss, weight gain, swollen ankles and feet and many other side effects. This is the 21st Century and you would think that someone could come up with drugs that don't have those side effects or be able to reduce these side effects.

Wound Lady
Wound Lady 2012-06-26 12:20:43 -0500 Report

I lost my hair also, which was always my pride & joy. Dark brown and very long. I cut it when I started noticing the lose of hair thinking it was from the weight. I have been off Actos for 2 months now glad to know my hair may grow back. I'm with you about Actos, I will never take it again. I started a higher does of cimmamon 2 capules of 1000mg mornings with medications and 2 at nite. Blood sugars was running 152 +. It is back down to 90-100. I'm taking Metiform ER in the morning and at nite with Lantus 20 units in morning. While taking Actos I gained 30 pounds and was straving myself because of the weight gain. Ankles swollen and I was miserable. Best thing I ever done was tell my Doctor I wasn't taking Actos any more. I have lost 12 pounds so far.

jigsaw 2012-03-31 07:32:50 -0500 Report

Glad to hear your doing better since stopping Actos. I spoke with the nurse at my endo's office about the bladder cancer report. She said "he still prescribes it, but it's not his body". She's lucky he didn't hear that ! I sure heard it!!!

draco59 2012-03-30 12:05:33 -0500 Report

I just saw the Endocrinologist, on Wednesday for the first time, the first thing he did was take me of the Actos, and I took it twice a day. His main problem with it is the rate of bladder cancer. Europe pulled from the market. I’ve been on it for a couple of years so, that could also be why I can’t lose weight and my feet swell. I would defiantly talk to your doctor about……

jigsaw 2012-03-30 13:56:47 -0500 Report

Glad to hear it!

draco59 2012-03-30 14:12:59 -0500 Report

and he called and took me off my Janumet, because my Creatinine was hi. So right know I'm on nothing. I see him in 4 weeks and I'm to call if my sugars goes over 200… So well wait and see.

draco59 2012-03-30 16:11:02 -0500 Report

Felling good, sugar this am was 115. We talked about different things he ws going to put me on, my A1C came back 7.7 and in Aug. last yr it was 6.5, so I'll be on something when I see him again

cwkw6 2012-01-26 22:59:47 -0600 Report

was just recently taken of actos for the possilbe hazrds it can cause and has given to replace gliipizide

TAR Jewel
TAR Jewel 2011-10-29 05:35:26 -0500 Report

I don't use but just yesterday I saw a tv ad stating that Actos has been linked to bladder cancer…there is an on-going lawsuit…you are to contact the said Lawyer if you use this product. Be careful!!!!!

sunnysteph 2011-08-23 22:53:12 -0500 Report

My doctor just started me on Actos this week (15mg) to reduce my blood sugar level as my last A1c was over 9. I am also on Metformin.
I have already discovered since I eat light for breakfast that it is better to take with bigger meals (such as lunch or dinner) because otherwise I was sick to my stomach. Now that I am reading the other comments, I will definitely be watching for other side effects as well.

kitkat1955 2011-08-08 16:23:12 -0500 Report

OMG! Actos was a nightmare for me!! (see for details). I recently discovered that edema appears to be a common side effect and it just about took me down for six weeks before I talked my doctor into taking me off it. Side effects of Actos that bothered me: severe edema, weight gain (especially around my middle; even though my eating habits hadn't changed, I gained 35 lbs. in 7 months), extreme hair loss. Been on Onglyza for two weeks and I've already lost 9 lbs. of water weight, starting to lose 'real' weight, the edema almost gone, and while my hair is still falling out, it's significantly less than it was two weeks ago. I hope this will abate completely soon!

I believe Actos can help with your BG numbers, but there are other meds out there that can probably do it without all the side effects. And swelling is no fun!

Good luck. Let me know how it goes for you…

NikkieM76 2011-06-22 10:34:52 -0500 Report

I have been diabetic for about 12 years now and have been on many medications to handle it. I have found that there are others better than ACTOS not just due to the heart related issues but the swelling also. I was on glucophage for the longest time for pill, this is combo pill for metformin and glyburide. This worked great for me. ACTOS is known to cause HEART issues. My father was on it and has had a double bypass, angioplasties in legs and heart, as well as now has having a defibuklator /pacemaker , and stroke. He is only 55, I beleive ACTOS contributed a great deal with this and it has come out in the press. Please do more research. There are many medications that are out there nowadays. I am just on Insulin and I do fine just need to monitor more. I am on Lantus and Humalog. I also have to say the pills get very expensive.

Anna Ekberg
Anna Ekberg 2011-07-06 09:30:59 -0500 Report

I,have been on actos for quite a while,I,mentioned to my doctor the article on the effects of actos,and he did not seem concerned.dont need more problems,I am 79

Tigereyze209 2011-06-08 00:41:32 -0500 Report

I take Actos, and I have similar swelling, mostly in my ankles, but in fairness, I need to point out that I had this condition years prior to taking this med. I also take other meds to reduce the fluid buildup, and have since I was first diagnosed back in 2000.

MrsCDogg 2011-06-05 07:18:26 -0500 Report

I'm taking Actos right now. I too have the same problem of my feet and ankles swelling. I can deal with that side effect, but what I can't deal with is the side effects of Metformin. So, if having swollen feet and ankles is what I have to deal with then I'll just deal with it.

runthe 2011-06-07 21:35:12 -0500 Report

Tell me about it. I was taking metformin 1000mgs daily to 2000mgs daily. I was sick all the time. both ends. the doctors finally took me off of them and they had to put me on Insulin. Insulin wasn't doing it for me so they put me on actos 30mgs daily along with the insulin.

2011-06-04 23:37:34 -0500 Report

Runthe~ I was on Actos for years. (approx. 8) because it dropped my b/s numbers to the point where I was in hypoglycemic mode for the majority of the time. (I was also on Metformin). My Endo quickly took me off.

Copperchef 2011-06-04 16:02:29 -0500 Report

Go to the Actos website,
Read everything carefully. If you have been diagnosed with CHF(congestive Heart Failure) you maybe in trouble.
Are you seeing an endocrinologist or just the family doctor?
Some swelling is a side effect of the medication, but it is better to be safe than sorry. Make a call on Monday.
However, if you develop shortness of breath either sitting up or lying down, you need to go to the hospital and not wait for Monday.
Any time you have shortness of breath with swelling it is not a good sign.
I am a retired paramedic here in Illinois with 21 years of service. So, monitor yourself but if you have no other symtoms than just the swelling, I would wait till Monday like mkhojh99 said.
PS. it always a good idea to ask your doctor, what are the side effects of any medication you are taking. Fore warned means you are prepared to recognize any changes that occur in your body and can evaluate them better.

runthe 2011-06-04 18:31:19 -0500 Report

Hi Copperchef I have not been diagnosed with congestive heart failure. I see a regular doctor but every three months I go to the diabetic clinic and see a practioner. I have some short breath only when I walk up some stairs. I have notice a slight cough at times, I don't know if that is associated with actos or not. Thanks for the website I will look into it now…

mkhojh99 2011-06-04 14:42:41 -0500 Report

I would not wait…the swelling is a sign of heart failure. I was on Actos and only lasted two weeks on it due to the sweeling. The pharmacy said when you have swelling in your hands and feet so much that is a sign that your body cant handle the extra fluid and it could be COULD BE (in my case it was) sending your heart into failure…dont wait…call your doc on Monday!!!!

edvel54 2011-06-04 14:30:55 -0500 Report

swelling is a side effect of Actos. elevating your feet helps also compression socks
I took Actos many years, was taken off, because another side effect is sinus infections.

There is a FDA warning & lawsuits out on Actos. Seems taking it could cause heart failure

runthe 2011-06-04 15:08:15 -0500 Report

I did not know taht thanks for the information. I will try and find thiis info on the web.