Yay, Avandia for me

[RunnerDuck]

My new doctor KICKS @$$... he really knows his stuff about PCOS. He was totally fine with my trying Avandia... yippee! Just have to get base line blood work then I can start. Will do that tomorrow AM.

With regard to dosing... he says studies show it is best to take it at night... isn't that weird? I would have assumed that if you only take a med oncem you should take it in the AM... but he says no, night time. My other doctor never mentioned that... maybe it's new knowledge? Anyone else been told this?

[~Sandra]

My doc told me to take the Avandia at night because it helps with the swelling issue.
Not sure if its true but I've taken both Avandia and Actos (which I loooove) before bed without any swelling problems at all.

[RunnerDuck]

Did Actos work better than Avandia for you? My doctor doesn't use Actos any more... he says he has seen more women get the swelling side effect with that than with the Avandia. I have no real experience with either (took Avandia for 3 days but chickened out, worried about the swelling/weight gain) so had no idea which one I hoped to be prescribed today... I was leaning toward Avandia, though, since I have a bunch of it already.

Love your sig BTW

[~Sandra]

Keep in mind that I'm not TTC yet, so I can't help you much there....

Ok, where to start with my med saga?
Gave up on Met after almost 3 years of never-ending GI upset. Switched to Avandia for about a year. Periods were about as regular as they always are for me (30-40 days). I honestly didn't notice much of anything on the Avandia. No side effects apart from some sinus headaches for the first few months, no weight gain and no boost of energy.
Went off of it because I didn't feel like it was really making a difference and was feeling really run-down constantly. That's my main PCOS symptom (fatigue) and I was really looking for something to help that. Went back on Met to see if my stomach was any tougher but it wasn't of course.
Started Actos in October-ish. Spent the first 2 months in living HELL with one sinus infection after another. At one point I was on antibiotics, a steroid nose spray and a prescription pain killer. It was a nightmare. I couldn't get myself to give it up though because I actually had energy! I didn't wake up crying at the thought of getting out of bed like I used to. I reduced my dose and pushed through. It seems like the worst is over as far as side effects although I do get sinus headaches almost daily. They are usually cured with Advil now though.
My first 2 cycles after starting Actos were 28 days! The first 28 day cycles in my entire life. The last few have been about 30 so still really good. Most months it seems that I am ovulating based only on CM changes and my untrained analysis of how I'm feeling. So all said, I really like the Actos. It's my docs 2nd choice too, well 3rd really, after Met but I still wanted to give it a go.

Originally posted by RunnerDuck

Love your sig BTW

Thanks! It's in response to a someone on this board telling me that I shouldn't be, "So open-minded that my common sense fell out." All because I believe that that any two people that want to should be allowed to marry. Silly me

[Lisa2008]

tomorrow will be a full month on Avandia. no problems so far. no swelling or anything. I think i even o'ed????

sh, what does a month of Atcos cost you? i was a little shocked that Avandia was so expensive at $70 per month. Not too upsetting, cause it is covered by our plan.

[BabyRN]

Runnerduck-Did you bring up starting Avandia or did your doctor? What did he say about BF with it? I remember you had been concerned.

What dose were you on with Met and what dose are you on now with Avandia if you don't mind me asking?

I really want to try Avandia but can't get my OB/GYN to give it to me. I'm stumped for where to go to next.


Pam

[~Sandra]

Lisa,
My Actos is about 70 bucks a month too. It’s very close in price to Avandia if I remember correctly. It’s covered for me too so the price didn’t really stun me.

[Chrissy]

Runner Duck, so glad you got the Avandia. I also took it at night with dinner. It tended to make my blood sugar go too low in the morning so we switched it to evening. That solved the problem. I have normal blood sugar (78) usually & insulin (7) but when I took it with breakfast I was shaky and sweaty, that panic feeling at about 11:00. One of the main reasons I quit the Avandia aside from the swelling was that my acne was horrible. This was something I could not live with so went off.

I liked how I felt on Avandia and it did give me extra energy and zip. I wanted to add that since I really noticed this both times I took it. I am now trying to add chromium and anything else I can find to help that while on bc pills.

I also experienced headaches, this is a common side effect because of the extra fluid retention and if you tend toward sinus issues, this might worsen. I even snored for the first time since pregnancy on this stuff. I didn't believe my husband at first. Probably the extra water. I never gained weight on it though and wanted to tell you that since many women worry about this.

Hope this helps as well as all the great replies you're getting. Good Luck!

Christine

[RunnerDuck]

Originally posted by BabyRN
Runnerduck-Did you bring up starting Avandia or did your doctor? What did he say about BF with it? I remember you had been concerned.

What dose were you on with Met and what dose are you on now with Avandia if you don't mind me asking?

I really want to try Avandia but can't get my OB/GYN to give it to me. I'm stumped for where to go to next.


Pam

I brought it up... but I also went to a doc that I know often prescribes it for his PCOS patients (there's a nother cyster who sees this same doc actually... that's how I know...)

He said no nursing on it. My pedi said the same thing. So actually my baby was been weaned now for .... errrrm, I don't know, a bit over a week? Except for one night when I closet nursed because he was sick and I felt sorry for him... Shhhhhhhh!!! I figured if this doc said it was OK to nurse and take Avandia I can build my supply back up but oh well, no dice. SO now my hope is it works fast, I get preg, drop the Avandia, and go back to nursing, tee hee.

I take 2500mg of met - the 5oomg pills, 3 w/ breakfast and 2 w/dinner... and now I will be taking 4mg Avandia at night. Have to get bloodwork still... meant to do that this morning... will do it tomorrow I guess...

I would find an endocrinologist... Something my new doctor claimed... I did NOT know this, I am still not sure it is true... but he says Metformin actually IS approved for use of PCOS... I thought it was still off label??? But I have encountered a few docs who are OK with metformin but not Avandia or Actos... so who knows? Maybe that's why? If it is approved, it's still awfully hush-hush... But I also overheard this doc (talking to a resident who was observing yesterday) that a lot of docs, when they talk on tape to their patients, you know so someone transcribes later? they will talk about metfomin to PCOS patients... then turn the tape off before talking about Avandia...

!!!!!!!!!

I really wish there would be a push to get these meds approved for PCOS. It just sucks that they are off-label for this... what is the problem? I know there is some research issue... they have to pay maybe? But who do they pay? DO they pay off the FDA? Or is it just they have to pay the participants? I have a friend who works for GSK (they make Avandia) and I am thinking of asking her is she knows anyone who might be behind research... I bet we could get a ton of women with PCOS to volunteer to be in the studies to push to get this approaved don't you think? I mean if we have insurance and we're getting the meds and taking them anyway, why not make use of it? So often research offers free meds or some other incentive... Getting treatment for PCOS recognized is enough incentive for me!

[BabyRN]

Runnerduck- Thank you for answering both of my posts. I've glanced at my primary insurance companies doctor lists and now my "specialist" is listed under Reproductive Endocrinology. (I'll go back and look up Endocrinologists) So, I'm debating going to see him to see about Avandia. Although, he didn't even want to go above 1500 mg of Metformin. I specifically asked him about upping it since it hadn't done anything for me. This was the first time I met him. Then at the very end of the appointment I clarified with him to just take 1500 mg and he said, "No, if it hasn't helped with the clomid then why add more drugs into the pot if they aren't needed. You don't need to take that"

I would totally be willing to take part in an Avandia study. Too flippin bad that Utah NEVER has any studies going with PCOS. I'm tempted to try and get it outside the US. I'll conduct a research study with a participant of 1. If it just wasn't so gosh darn expensive, I'd be all over it.

There is a research facility in Salt Lake City. But all you hear about from them right now is for a study to get a vaccine for genital herpes. Yeah, not really interested in that one at the moment. All I would need is for it to give herpes to me. That would just make my life even more lovely.

I was looking on the internet for Avandia articles to take to which ever doc I decided on. And there is one from MedicineNet.com that I just have to quote: "Rosiglitazone may cause ovulation in women who have stopped ovulating and who are considered premenopausal and are resistant to insulin. Rosiglitazine may improve insulin sensitivity sufficiently and lead to ovulation. Therefore, there is the potential for pregnancy to occur." HELLO, THIS IS WANT WE WANT DOCS!!! It's listed under the side effects and precautions section. Maybe they need to read the drugs descriptions a littl bit further.

So, your still taking the glucophage too? I'm sorry, I forgot, have you been taking the met all along? The reason why I ask is I haven't taken it since my appointment back in July. I'm just wondering if the Avandia helped with the nasty GI effects. Are you taking the name brand Avandia or the generic (rosiglitazone)?

Can I just live my life through you right now?? You got to let me know if you get any funky side effects.

Living on your every word related to Avandia,

(BUT not stalking, I promise)

Pam

[RunnerDuck]

Yeah, I'd take part in the study, too, if there was one. I emailed my friend but she is still in London so it may be a while before I hear back and a while more until she sees if there's anyone she can put me in contact with. *crosses fingers* I feel like an ant trying to move a mountain here but I am willing to make a jackass of myself in order to see more women get some hope for overcoming this. It just burns me how often we here "No, there's no point in raising your dose" or "I'm sorry, but I am not comfortable approving those drugs..."

I'd be leary of a herpes study, too! I was asked a while back to be in one for genital warts... ummmmm, no thanks. I have done my share of guinea-pigging myself out in the interest of $$$ but I have to draw the line when it involves my genitals. (Mostly I have used my brain... you get paid big bucks for fMRI studies. They're boring but low risk...)

So did ya look up endocrinologists yet? I have really had better luck with them. I seriously always thought it was possibly all in my head but unless you are agressively TTC, the REs just don't seem interested in you. Now, I have never been agressively TTC - was actually never even TTC before - and I just felt like they felt I was wasting their time. Had better luck with a regular endocrinologist. What's funny is I kept getting referred to REs , not liking them, then finding a good regular endo on my own and been happy. This last time, I asked for an RE (because I do want to get preg again) and got sent to a regular endo... Anyway I mentioned this observation to him and he said I about hit the nail on the head. (I have lived in 3 states over the last 2 1/2 years, that's why I have to keep changing doctors... ) So now I do want to get preg but I am not actually ready to aggressively TTC... and I consider clomid aggressive... just because my goal is to allow my body work and hope conception will follow. Not ready to force ovulation. I wish more doctors would understand the importance of getting our bodies to work, plain and simple... not look at PCOS as something where if a woman is not TTC, you can squash her ovaries into submission with BCPs and if she is TTC you can whip them into working harder with clomid. This is not to say that either of these treatments is bad in and of themself, I just don't think they should be jumped at as first line approach if treating the underlying issue might work just as well and be better in the long run.

ANYWAY. YES, I am still on met. Don't worry about forgetting things, sometimes I can't even remember what all I have said.

I went on glucophage in January 2001. Started at 1000mg, quickly worked up to 1500mg. In April of that year, went to 2000mg. Added BCPs. Went off BCPs later that year... maybe Sept? Had semi-regular periods for the next, oh, 6 months. They were long cyles and semi-variable, but close to regular. Doc wanted to add Avandia but I feared weight gain. Sometime in spring 2002, I switched to generic metformin, same dose... and summer 2002, my symptoms came back with a vengence. Hair loss, primarily. Some breaking out of the face. No periods. Ugh! We moved to Seattle then (I'd been living in PA) and my new doc referred me to an RE... I wanted to go back on name brand gluc and go up to 2500mg. She was OK with a "brand medically necassary" script but not raising the dose. "If it hasn't worked at this dose, it won't work at a higher dose... but we'll see if going back on name brand helps." She said no to Avandia or Actos. Went on Yasmin to help with symptoms, I need relief from the hair loss!!! Yasmin made me spot and made me kind of batty, so I went off it for a month... January 2003, went to a regular endo... she let me go up in dose of gluc to 2500mg/day... also said no to Avandia... So I raised the gluc... went back on the Yasmin... and got pregnant.

And there ya have it. My Yasmin wonder was born 11/03 and I have been nursing since then, so where my PCOS stands now is a mystery... But I never went off the gluc, except for a 3 week window or so around when my baby was born. My cycles started to come back in Sept or October (depending on if you want to count one day of spotting or the real deal) but have been very far from normal (bled for most of November and into December, for example...) Even though I can't know for sure where things stand, because nursing can affect ANY woman's cycles, I have little reason to believe that things are going to be normal for me now if they weren't normal before. I mean, a person only gets so many miracles in her life, right? Since we moved to CA when I was 18 weeks pregnant, I didn't look to find a PCOS doctor back then... have been living off my stockpiled glucophage... November's bleeding episode is what drove me to find a PCOS doc again. And he seems like the best one yet. So now I am on the gluc 2500mg/day and the 4mg Avandia. Too early to say what's working.

ANYWAY that's about it. As far as I know, there isn't a generic Avandia available ... but I could be wrong, I got samples from the doc so haven't had to get my script filled yet.

Gotta love how getting pregnant is listeds as a "side effect" and people still don't think it's worth a shot...

Enough out of me. Good luck!

[BabyRN]

RunnerDuck- I called and made an appointment with an Endocrinologist this am. My appointment isn't till March 2.

So I have a question for you. Should I go fill my met prescription and take it for the next 6 weeks. Then any blood work he draws will be with having taken the Met. Or should I just wait. I'm just afraid if I go in there not currently taking anything then he's going to want to have me try met for a little while, then rerdraw bloodwork before giving me Avandia....if he even will give me Avandia. What do you think?

[nomadic_existence]

Originally posted by SH
Keep in mind that I'm not TTC yet, so I can't help you much there....

Ok, where to start with my med saga?
Gave up on Met after almost 3 years of never-ending GI upset. Switched to Avandia for about a year. Periods were about as regular as they always are for me (30-40 days). I honestly didn't notice much of anything on the Avandia. No side effects apart from some sinus headaches for the first few months, no weight gain and no boost of energy.
Went off of it because I didn't feel like it was really making a difference and was feeling really run-down constantly. That's my main PCOS symptom (fatigue) and I was really looking for something to help that. Went back on Met to see if my stomach was any tougher but it wasn't of course.
Started Actos in October-ish. Spent the first 2 months in living HELL with one sinus infection after another. At one point I was on antibiotics, a steroid nose spray and a prescription pain killer. It was a nightmare. I couldn't get myself to give it up though because I actually had energy! I didn't wake up crying at the thought of getting out of bed like I used to. I reduced my dose and pushed through. It seems like the worst is over as far as side effects although I do get sinus headaches almost daily. They are usually cured with Advil now though.
My first 2 cycles after starting Actos were 28 days! The first 28 day cycles in my entire life. The last few have been about 30 so still really good. Most months it seems that I am ovulating based only on CM changes and my untrained analysis of how I'm feeling. So all said, I really like the Actos. It's my docs 2nd choice too, well 3rd really, after Met but I still wanted to give it a go.



Thanks! It's in response to a someone on this board telling me that I shouldn't be, "So open-minded that my common sense fell out." All because I believe that that any two people that want to should be allowed to marry. Silly me

Actos was not covered by my insurance. according to my doctor. I tend to get sinus headaches a lot too, but Man! I am hoping the Avandia works!

I love your sig too!

[Mich831]

Hi All,

Can I jump on the Avandia bandwagon too?

I am hoping this will be a miracle drug for me too. I have diabetes so they gave me Glucophage XR 2,000mg to help and to see if I get normal cycles and ovulate.
Well, after being on it for over 2yrs it did NOTHING for me except help me lose 62lbs. Which I am not complaining about but I really wanted to get PG.
I finally went the route of IVF and after a MC and a FET I had my little miracle boy.
But 6 months PP I started getting AF. I thought OH wow PG helped my cycles. So June I got AF...about 30 days later in July I got another AF. Wow! Then early Aug I started to spot. I even took a PG test BFN. Then the spotting stopped. Then late Aug early Sept I got AF and it NEVER left. I went to the OB and they put me on Provera 5 mg a day. It did NOTHING to stop it. They finally upped me to 40 mg a day. I finally stopped and I just went back to the OB and my lining went down from 2 mm (or cm don't remember) to 1. But now I am having break through bleeding. So I asked my doctor if I could try Avandia. I told him my PCOS is out of control. Hair loss on my head...hair growth in the wrong places.
And I want to see if it will make my cycles regular and actually get me to ovulate. So he said no problem. He said we'll start out on 4 mg. He said start taking the Avandia then stop the Provera and see how your cycle goes. If I don't keep bleeding then I know it's working.
He didn't mention staying on the Glucophage though but I am thinking of taking it too.
I am bad but I haven't been on the Glucophage since my son was born. I went off it the day before I delivered.

I would just LOVE for this to work for us. I just can't afford to go through IVF again and we really want another baby.

Besides I really need to get my PCOS in check. The hair problem is driving me crazy. I can't stand seeing the loss of hair on my head. And I am getting tired of tweezing or waxing everyother week. And it would nice NOT to have my AF EVERYDAY. I am SO tired of bleeding. YUK

So here I am...hoping it works for ALL of us!

[BabyRN]

Yeah, I went and saw my RE on Friday. He gave me a script for 4 months of Avandia. I had to get some Liver Enzymes checked that day. But I got 4mg once a day. He also gave me a script for Clomid 150 mg for 6 days (cd 3-8). Now I just need AF to start. I finished Provera on Thursday. HURRY, HURRY, HURRY. I want to get the ball rolling!!!

He's not having me on Met at the same time. Especially since I was still having diarrhea hit and miss after 2 years.

Runnerduck- Now I guess I can cancel the appointment with my Endocrinologist.