anyone experience edema with AVANDIA?

IFBPreachersWife · 12-18-2004, 05:24 PM

I've taken avandia twice in the past few years. Both times it has regulated my cycle and restored O but my legs swell on it. Of course, this scares the life out of me and I quit taking it. Just curious if anyone else has had this happen and if you've figured out a way of preventing it. I was on 4mg.

I've been on Gluc XR since Oct 2002 and it doesn't do a whole lot for me. I do get AF every 2-3 months whereas w/o it, she'd never come but I don't think I'm Oing. I've maxed out my dose (2000mg) and my dr won't increase it and now I have no clue what to do. I"m on the XR simply because it's better than nothing.

PCOSinDC · 12-20-2004, 10:34 PM

It didn't happen to me when I was on it, but my doctor did tell me that if my legs started to swell I should call him. I loved being on the Avandia. I wonder if Actos would regulate your cycles without the leg swelling?

Erica

Chrissy · 12-21-2004, 11:31 AM

Oh hello again. I think we answered each others posts once before concerning avandia. Well I am in the same boat as you except I never took Met. but have considered it. I am on my second go of avandia and once again am swelling. I am only on 2 mg. and am cycling. A very big surprise to me and my dr. since no one else she sees takes this alone and cycles. This is so amazing since I NEVER cycle without help. I went 2 years once! I am thin and my only other symptoms are acne and hair growth. I got pregnant quite easily on clomid and don't really test positive for IR but we all realize it plays a role somewhere.

Is your skin clear on Avandia? Mine is horrible and I can't take it any more. I also am swelling in my hands, feet, legs, generaly all over but not bad enough for the dr. to take me off. I find my arms fall asleep when sleeping on my side (too much fluid compressing the nerves-caused by fluid I'm told). My rings won't move in the morning and my face looks so puffy. I decided this just isn't right and am going off but am having some bloodwork done before returning the "old faithful" bc pill. Something else has got to be a factor here. I don't believe avandia can help with all the pcos factors. Its interesting that insulin is supposed to be the cause but when MEt and other ins. meds. don't normalize us I find there may be another hidden explanation.

I have considered actos but was told by my doctor that they are very similar and will probably react the same. If you try it keep us posted.

Sorry so long but wanted to give my input and sometimes more information helps. Happy Holidays!

IFBPreachersWife · 12-22-2004, 11:04 AM

Thanks for your replies!

I had the same experience - legs, hands and face swelling and yes, my arm went numb when laying on my side. My dh noticed my face and asked me if the meds were causing a problem. The first time I took avandia, it took 3 months for this to happen. This time, it only took a week!

I'm back on gluc xr. The dr took me off it solely because she said she thought I had gotten the most results that I'd get from it - one 2000mg, I would cycle ~ ever 2 mos but I don't think I was Oing. I'm waiting for bloodwork to come back.

Unlike you, I am *not* a thin cyster - unfortunately, about 100lbs from it. So, I've decided to commit myself to joining WW next week. Maybe getting some of the weight off will help the Gluc to what it's supposed to do. Have you tried the Gluc? Did it not work for you? If you get some answers, please post them! I too loved Avandia because it makes me cycle AND it makes me O - something my dr can't figure out because they *should* all work the same way. I'm disappointed that I can't take it.

Thanks again ladies!

RunnerDuck · 12-22-2004, 03:30 PM

FWIW I am reasonably thin - 5'4, 135 pounds - and met doesn't work for me. I'm following these avandia discussions with baited breath... hoping it will be my ticket to ovulation... fearing it will be my ticket to Hindenberg-esque-ness...

I read once that Met works better for overweight women and the thinner women do better on the other meds, actos and avandia... I think it was in the Samuel Thatcher book? But I don't know if I buy it... I just know met wasn't the miracle in a pill bottle I once hoped it would be.

Good luck with Weight Watchers!!! Maybe the extra kick of WW plus met will work well for you.

Chrissy · 12-22-2004, 08:19 PM

Thanks you for the replies. It is so comforting to come here when i get frustrated and read what you ladies have written. I thank God I found this site and am able to discuss all my concerns with you wonderful ladies!!!

Good luck with the weight watchers. A dear friend of mine who does not have classic pcos but many characteristics has just lost 100 pounds on it. It has taken a year and she also purchased a tread mill. She started walking just 15 minutes a day and is now jogging for 30. She is a true inspiration. She credits the weight watchers program. She loved the flex points and always had one cheat day a week, although I think this entered into the program after she started seeing results. I know the first 3 months were tough but then boom, off it came!

I am dissapointed that Avandia was not a good plan for me. I loved feeling womanly, if you know what I mean, normal like. I have never taken met and will consider it in the future. My RE does not feel it is a good option at this point. She highly recommends the South Beach type of diet for maintaining good insulin balance so I'll be good after Christmas. I am a sugar nut especially chocolate! She also said exercise, even walking may help as much as the avandia so with those two in mind it might help. My road looks to be going back towards bc pills but at least I cycle, stop the cysts and my skin looks like a 39 years instead of a 15 year old boys. Have a blessed and Merry Christmas!

IFBPreachersWife · 12-23-2004, 11:08 AM

Quote:

I read once that Met works better for overweight women and the thinner women do better on the other meds, actos and avandia... I think it was in the Samuel Thatcher book? But I don't know if I buy it...

I definitely wouldn't buy it RD. I am absolutely not thin...lol....and avandia works wonders for me if I could just not swell up like a balloon on it. I'm thinking about splitting my 4mg avandia pills in half and taking 2mg with 1000mg of Gluc XR and see what that does. My dr isn't interested in combining the two but I can't see wehre it'd hurt to try, providing the avandia can be split.

Another blow is that the Glucophage (regular not XR) statistically works better than the extended release but I can't take that either. I can't ever get past 500mg and can't leave the bathroom while on it. That's no way to live imo. So....Met wasn't the miracle in a bottle for me either although I sure had wished that it were.

Chrissy, I know what you feel about feeling "womanly". There's something about functioning on your own that makes you feel "normal". I am hoping WW will help although I know I'm going to have to make lower carb choices in order for it to. For me, the option of WW over a lc plan was simply because of my family. I want them to learn how to eat right and I always found LC hard to incorporate into our normal meals. but it did work for me. Two years ago, I lost 24 lbs in 6 wks on Atkins.

TTYL!

RunnerDuck · 12-23-2004, 03:04 PM

I thought I had read once that the regular works better than the extended release version... can't remember where. I never tried the extended release kind... but I do know the generic didn't work as well as name brand for me. I think. It may just be the met stopped working all together when I switched...

I'm lucky in that side effects were nevere a problem for me... but then, results were never achieved, either.

Are your 4mg Avandias scored so you can cut them? If I can't get this new doc to let me try avandia, I am just going to say screw it and dip into my stash... but I have a few 4mg pills and a bunch of 8mg pills... the 8mg ones aren't scrored, though, so I worry they will be hard to cut. Have you tried cutting the pills yet?

I also feel more womanly when I have real cycles... it does such wonders for my self esteem... and sex drive... DH seems to think I only want to have sex so I can get pregnant but that's not the whole picture... it's like if I have cycles, I feel FEMALE... and as a FEMALE, I want to have sex... without cycles I feel sort of sexless... I can't get this point through to him. I know it's really easy to say "It doesn't matter if you have cycles, you're still a woman, blah blah blah" but I wish someone could explain that to the part of my brain that tells me otherwise... it's really nuts. Other woman b!tch and moan about periods and cramps and all but I am at my happiest when I am having menstrual cramps, what's up with that??? It's like I am walking around with this wonderful little secret... hey, guess what, I'm FEMALE!!!!! But that's not something most people can understand...

IFBPreachersWife · 12-23-2004, 05:53 PM

Quote:

it's like if I have cycles, I feel FEMALE... and as a FEMALE, I want to have sex... without cycles I feel sort of sexless... I can't get this point through to him. I know it's really easy to say "It doesn't matter if you have cycles, you're still a woman, blah blah blah"

I do think you're on to something. It's amazing that imo, PCOS affects our *mind* more than anything! All the physical symptoms can be masked my medication (or occasionally fixed) but it's what's in our head that's the real problem. I hear ya - really I do!

I just looked at the avandia tabs. They are NOT scored in the middle. I don't know if I could get a pill cutter to split them? they're awfully small. but since they aren't extended release, I would think it'd be ok to split them.....hmmm....all I know is I just increased my GlucXR back to 1500mg (working my way back up to 2000) and here I am again, feeling like I can't lift my head off the pillow and all I want to do is sleep. I can't live like this! There has got to be a solution. If you find it first, please let me know

Chrissy · 12-24-2004, 07:03 PM

I did just this when my doctor had me switch from 4mg. to 2 mg. I had paid for a months worth and didn't want to lose out so I just bit them down the center or snapped them. They snap pretty easily and I was told this was fine. Last month I actually filled my 2 mg. prescription. I'm sure it would be fine. It was for me.

jra · 12-28-2004, 10:14 PM

I've had the same problem with avandia too. I was on it for about a year and a half and loved it. I had no problems with it and I was finally cycling and ovulating. I was finally able to get pregnant on that alone after 3.5 years of trying. After I finished nursing my son, I went back on it. I had swelling in my knees almost immediately, so I had to stop taking it. When I went off it, several people asked me how much weight I had lost. I hadn't lost any, so I guess I hadn't noticed the puffiness in my face too, but others had.

Now I've been on Glucophage XR for 1.5 years. I cannot take the non XR version or I get very sick. My first and only try with the regular gluc almost landed me in the hospital for dehydration and I lost about 20 pounds in less than a month (unfortunately it all came back). The XR worked great for the first year, but the last 6 months or so, AF has gone missing. I've just recently kicked my dosage up to the 2000 mg that I'm supposed to be on, but the side effects are starting to get to me. I had enough problems with those on 1500mg. If AF doesn't start coming on its own, I guess I'll have to go back on bcps and start the fight with insurance to pay for them (DH got a vasectomy which ins. paid for so they'll have an issue with paying for bcps now).

The part that confuses me most is that I read everywhere that weight loss is supposed to help things, but it seems to be the opposite for me. I started going to Curves last December and by the end of April, I had lost 25 pounds. Since then, AF has stopped coming on its own and every 3-4 months, I take a pack of my left over bcps just so it comes again. I'm still too heavy at 165 (I'm 5'8"), but it is definitely better than the 190 I was when the meds we helping me.

So, I guess I am looking for something new that will work for me too. My endo appt isn't until April so I have a nice long wait...

Jennifer

Chrissy · 12-29-2004, 10:49 AM

I am thin and no ammount of loss will help me deal with PCOS. It is all over the thin cyster boards how weight loss and low carb diieting doesn't help much. My symptoms were actually worse the thinner I was. It is very frustrating to know that weight cannot help many of us. I was always told in college the reason I didn't cycle was that I was too thin. Now they just say eat healthy and take your meds. (bc Pills) to regulate. My weight and evidently exercise doesn't change much for me. This is a crazy syndrome!

~Traci~ · 01-04-2005, 03:46 PM

How about taking Actos rather than Avandia? Or Avandamet? I've been taking Actos (15mg) for 2 months now & I've had no swelling (except for the left ankle which is normal for me when I stand on my feet all day long of eat lots of salt). Don't know if it's actually working or not though....how do you tell? I can't take Gluc (any form-generic or XR) b/c I'm resistant to it. I haven't lost any weight but I haven't gained any either (I've been eating horribly bad the entire months of Nov & Dec too). I'm starting the IR Diet in Feb (which might be good for you IFBPreachersWife since you incorporated regular foods in to it but just watch your carb/protein intake & link & balance things) so I'm hoping that helps. No TTC for right now on that front & no AF so far either (which right now I'm hoping stays away the entire month of Jan b/c we'll be gone travelling most of the month!

--any other time I would welcome her for the same reasons as everyone else states, I would finally feel like a real woman!

)

I asked my Internal Medicine Specialist about the differences. She said the only difference between Avandia & Actos is biochemical...basically, the way each of the drugs breaks down but it makes no difference taking it b/c they both contain the same things (I suspect it's just like the Follistim/Gonal-F connection where they are the same drugs but made by different companies...).

Traci