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  1. #1
    Registered User lisa922's Avatar
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    Default Anyone take Megace?

    Hi, all...I have Endometriosis and PCOS and the doctor is prescribing Femara to try to get rid of the Endo, but because it causes cysts, I also have to take Megace to keep the ovaries from making the cysts. Has anyone tried it before? I've read a lot here about Femara to induce cycles, but haven't found anything about Megace. Thanks!

    Lisa
    Lisa - age 39, gallbladder surgery 5/03; lap for Endometriosis 7/03; Hysterectomy 9/03 (uterus only); Celiac 4/04; PCOS; horrible return of the Endometriosis beast in 01/06

  2. #2
    Registered User Jane Dough's Avatar
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    I had the same exact problem as you PCOS and Endometrial Hyperplasia. A few days ago i went in for some results of a uterine biopsy and to my surprise the OBGYN said i no longer have hyperplasia and can discontinue my medication. The medication i was on was Megastrol a generic of Megace. I took 40 mg daily for a little over a year and now i am clear of it. I am not sure why your doctor is prescribing more than one drug, but all i can say is that through my personal experience Megace/Megastrol worked, but everbody's body functions differently. It is almost as if your medications are switched. Megace/Megastrol did infact induce my period but it seemed to take care of the problem.

  3. #3
    Registered User lisa922's Avatar
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    Congrats! I'm so glad that it worked for you! I am on the same dose and it is also the generic one called Megestrol. I actually have Endometriosis instead of Endometrial Hyperplasia, so the Femara is supposed to shrink the Endometriosis. Of course, I've heard of Progesin-only treatment also working for Endometriosis, so I wonder if I could use it by itself. Did you have any side effects from the Megestrol? And, how does that work when you have your ovaries and uterus? Does it make your cycle stop? I only have my ovaries left and I guess I was wondering what it is doing exactly. I see him on Tues. for my 2 month check-up, so I'll probably ask him some more questions then. Congrats again on your good news and thanks for writing!!

    Lisa
    Lisa - age 39, gallbladder surgery 5/03; lap for Endometriosis 7/03; Hysterectomy 9/03 (uterus only); Celiac 4/04; PCOS; horrible return of the Endometriosis beast in 01/06

  4. #4
    L.A. Cyster JulieM's Avatar
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    I could be totally wrong, but isn't Megace also used for weight gain? I work with children who are underweight and have had (what I thought was) Megace perscribed to gain weight...?? Can't imagine I would want that! haha Don't worry, I'm probably thinking of the wrong med, but think of my shock when I saw the name on the PCOS boards....HUH?! haha
    Current Med Routine:
    -No More Rx meds!
    Inositol 1000mg

    I did take Metformin XR 1500 (d/c 9/07)
    Actos 45 mg (d/c 8/07)
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    LOST 30# after stopping these......???
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  5. #5
    Registered User Jane Dough's Avatar
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    First off, weight gain is possible when taking this drug. It is used to treat Anorexia or anyone else that is underweight. It can stimulate your appetite so you will gain. I have been putting on weight, but this has been a problem for me before even taking this medication. A lot of it has to do with the stress of not conceiving. I expressed my concern of weight gain to my doctor and he said 40mg was a low dose that it wouldn't be the medication. Maybe he is wrong or maybe he's right, i don't know. I had contiued stress about this medication when i was on it, because i questioned whether or not it was working, but of course positive results came out of it. Weight gain is not good, but the OBGYN told me the risk of Uterine cancer was higher with hyperplasia so i decided to go with the medicine. I am weary of taking hormone pills and such. I didn't do well on BCP's in my teens but something had to be done.

    I can't honestly say the side effects of the medication because i am not sure the problems i had were directly impacted by the medication. For example, i did get depressed because i wanted children badly and didn't think things would get better. It could have been me, or it could have been the medication making me depressed. Another thing is that i have experienced pelvic pain on my right and left sides, which was something i did not notice untill i was on Megastrol, but since i have stopped the pill the pain has continued so it could be related to the PCOS ...no nausia, no headaches. Just what i mentioned may be possible, but not certain.

    When i first came in to see my OBGYN last year. The only problem i had was a little spotting everyday, but he ran a transvaginal sonogram and found the endometrial hyperplasia and PCOS, because my ovaries were enlarged with multiple cysts. I guess i have not had a real period in a long time according to the doctor. When i began Megastrol after having a D&C, my daily spotting ended, but i did spot sometimes after innercourse and once in a great while for no reason. I did not have a period at all during the time of taking the medicine, but my doctor did point out that a "break through" bleeding would happen occasionally, so perhaps that was the spotting. Since i have stopped taking Megastrol the doctor said i am supposedly going to have a period soon. If i do then i will probably flip out in shock for something that has not existed for a long time. He asked if i wanted to go on a BCP and i am still up in the air about it. He said it was possible that i get pregnant, but the research i have done does not make me so hopeful with having PCOS. I am confused about whether i should be on something or not.

    With Edometriosis i am not sure, but it would not hurt to ask your doctor about taking the medication by it's self. I did for the hyperplasia and it got rid of that. I had to take Megastrol for a little over a year before i saw results, and for a year i thought the medication wasn't working, but i was wrong. I think you will do okay, but not everyone can take to a certain drug as others can, it just depends on your body. The thing that i do find interesting is that you said the Megastrol will be used to get rid of the cysts on your ovaries, and i know that after repeative ultrasounds i still have cysts, but my ovaries did shrink by a cenimeter during the time i was on Megastrol. The Megastrol with me was more focused to treat the uterus rather than the ovaries, maybe that with taking both of the pills, it will take care of the cyst problem, but i hope i helped a little bit.

  6. #6
    Registered User lisa922's Avatar
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    Jane Dough -

    I would suspect, based on my reaction, that at least part of your weight can was from the meds. I have a very strong appetite now that I did not have prior to starting the Megestrol. I'm trying very hard to control it, but it is hard because I am finding I am grabbing carb items which are what I was trying to avoid. I've decided I probably need to sit down and make myself a meal plan and try to adhere to it, because, left on my own in the kitchen, I am toooo weak!

    I had some pelvic pains seeming to come from my ovaries when I first started the meds, but I wasn't sure if that was from the Femara or the Megestrol. It seems (knock wood) to be better now, and I'm hoping it will stay that way! My doctor asked if my cycle had stopped when I asked him if he could do some bloodwork to make sure it had shut down my ovaries (I had some feelings last week like my left ovary was trying to ovulate and that made me nervous since you're not supposed to be on Femara if you are not also on the progestin to shut off your ovaries). I had to remind him that I had no uterus, so I didn't really know about my cycles!! That is good to know that it worked for you and turned everything off...I will assume it is turning things off for me, too!

    I asked him about whether or not my ovaries had cysts when he did the ultrasound in May and they did. I didn't know that...he said he didn't see anything at the time, but I think he must have meant no Endometrioma rather than no PCOS cysts. I'm glad I got that cleared up so now I will know to ask him about it when he does another ultrasound in January. Bummer that the PCOS cysts did not go away for you...I assume they will not go away for me either as it now seems that he was talking about other types of cysts.

    Thanks so much for the info! It was very helpful to me!! The plan now is for me to stay on this for 5 more months and then he'll take me off of it and we'll see how long it takes for the Endo to grow back. He said sometimes it can take as much as 6 months. When it comes back, then he'll put me on the meds again. Hope all this is the right thing to do. I go back and forth about whether or not I should have my ovaries out. I'd prefer to keep them, but get nervous about them majorly malfunctioning and causing and all sorts of problems in there!!

    Lisa
    Lisa - age 39, gallbladder surgery 5/03; lap for Endometriosis 7/03; Hysterectomy 9/03 (uterus only); Celiac 4/04; PCOS; horrible return of the Endometriosis beast in 01/06

  7. #7
    Registered User michelea's Avatar
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    Unhappy I am on 80 mg of Megace and MISERABLE!

    I am actually on Megace for the second time to stop bleeding. I have PCOS and am fighting to lose weight. I just found out that Megace stimulates your appetite, OBVIOUSLY not what I need now! But it did stop the bleeding finallya fter 10 months of bleeding since I had my tubes tied after the birth of my thrid child 10 months ago. Yes I have been bleeding for 10 months. My Dr is now telling me I need to have a hysterectomy. Removal of the uterus and my cervix. I am VERY nervous about this surgery I am particularly worried that it is going to make matters worse. I am absolutley miserable especially now finding out about Megace and its major side effect. It is either I continue taking the megace and not bleed until 6/18 (my next Dr appt) and gain tons of weight...or stop taking it and start bleeding again...aaaahhh!!

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    Registered User lisa922's Avatar
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    Hi, Michelea -
    I'm glad to hear that the Megace has stopped the bleeding - that is great news! Do they think that you will automatically start bleeding if you go off it, or is it supposed to cure things? I would do a lot of research about having a hysterectomy and perhaps even get a second opinion if you are not sure about things. You want to feel confident in whatever decision you make so you will not regret anything. I can't remember if we are allowed to list websites here, but I think we can...you should check out www.hystersisters.com for some great advice on hysterectomies. Keep in mind, though, that the people who have had great results with no problems often don't come back to the website, so it may seem like there are a lot of posts with problems. I've enjoyed all the support and advice I have gotten from that website over the years.

    Maybe you will be fortunate and you will not have an increase in your appetite while you are on Megace. Everyone is different and can react very differently to the same drugs. Hang in there!

    Lisa
    Lisa - age 39, gallbladder surgery 5/03; lap for Endometriosis 7/03; Hysterectomy 9/03 (uterus only); Celiac 4/04; PCOS; horrible return of the Endometriosis beast in 01/06

  9. #9
    Registered User michelea's Avatar
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    Default Dear Lisa922

    Thank you so much for your kind words. Actually I was on Megace before to stop the bleeding prior to have a Uterine Ablasion procedure (that was unsuccessful) to stop the bleeding and yes the minute I was off the Megace I started bleeding again. I had also tried just taking 40 mg at that point but it wasn't enough to stop it. Now my Dr is claiming that I have something called Adenomyosis (where the muscles surrounding my uterus are filling up with blood and the my uterus starts to contact and hence I am bleeding

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    Registered User Camisa's Avatar
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    I would like to call myself an expert in the way of Megace.

    Megace ES (the oral suspension) was prescribed to me to help increase my appetite in Jan '07. every time I took it, I started a period, but at that point in time, my periods were regular, everything was normal.

    When I told my doctor about the frequent periods (every 5 days) she told me it was because I was too thin, said nothing about Megace ES.

    So she put me on other hormones to regulate my periods. Because I was also on the Megace at the time, this threw my endocrine system into a tailspin and I dveloped cystic acne and panic disorder. Consequently I was put on Xanax which is a whole other horror story.

    anyway, had I not taken the Megace, or, if at least someone would have just explained to me that Megace will cause withdrawal bleeds, I could have avoided being polydrugged....but at the time I didn't even know Megace was a synthetic progestin.

    I believe my PCOs journey began with Megace.

    It also tweaks your adrenals, and I'm not sure how it does so, but my advice is if it works for you --- great --- but you CAN NOT just stop taking it, and in MY case, it CAUSED my problems.

  11. #11
    Registered User lisa922's Avatar
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    Nova -

    I'm sorry to hear about your problems with Megace. I get very frustrated when I hear of doctors giving lots of prescriptions without paying enough attention to ALL the symptoms someone has and without taking into consideration all the side effects from the drugs. I know I had some issues, but I believe my major issues were a direct result of a cortisone shot in my foot for plantar fascitis (sp?). I think had I stopped after one shot, I may have managed to recover, but after the second shot, everything in my endocrine system went out of control and my life has never been the same. Of course, I asked the doctor about side effects from the shots and was told there were none unless I had a really rare heart defect, so I went ahead and got the shots. I don't like taking medicine, so it took a lot for me to take a leap of faith and try the shots. Although I did have good results from the Megace regarding my Endometriosis, I would have to think long and hard about taking it again due to the increase in appetite and the excess hair growth I had from it. I hope I never have to consider it again, but I guess I just have to wait and see what my Endometriosis decides to do.

    I hope you are doing better now. Hang in there!!
    Lisa
    Lisa - age 39, gallbladder surgery 5/03; lap for Endometriosis 7/03; Hysterectomy 9/03 (uterus only); Celiac 4/04; PCOS; horrible return of the Endometriosis beast in 01/06

  12. #12
    Registered User michelea's Avatar
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    Default Update

    Well, to all of you that have replied to my posting, thank you. As of this morning I have stopped taking megace. I am "over" all of the side effects!! I am tired of eating all of the time and I am very worried about the risk of blood clots. (I have a very bad family history of blood clots) I had gone for a second opinion in regards to the hysterectomy and it is inevitable. I definitley have Adenomyosis. For those who don't know what that is, basically it is when the outer wall of your utereus (muscles surrounding uterus) fill up with blood as well as the lining which results in the uterus contracting to get rid of the blood and obviously bleeding. I have been dealing with this for 10 months Megace did stop the bleeding but it, to me is not worth the risk of developing blood clots. I go back to my Dr next wednesday at which time my hysterectomy will be scheduled. Heck whats another week of bleeding and cramping, I have been already dealing with it for 10 months...just don't know when the "flood gates will open" and the bleeding will begin has anyone taken this drug to stop bleeding and gotten off of it? Thanks!!

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    Registered User lacobb's Avatar
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    Default I'm on megace for endometrial hyperplasia with atypia.

    I've been on 40 mg of megace for about a month now, and I HATE it!!! I think I have had almost every side effect listed. I only have to take it until August, then I will have a repeat biopsy to see if the megace did the job. Aug. can't get here soon enough! What were some of side effects you all experienced?

  14. #14
    Registered User michelea's Avatar
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    Default Dear lacobb,

    I feel soo sorry for ANYONE who has to take that medication! As you can see from my previous postings, I had been taking 80 mg of Megace and I hated it too. I experienced MAJOR weight gain, hair loss and MAJOR mood swings. I would definitley ask your Dr if there is something else you could take. That medication REALLY SUCKS. Hang in there at least you know when you can stop taking it and it is only temporary.

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    Registered User Camisa's Avatar
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    Quote Originally Posted by michelea View Post
    I feel soo sorry for ANYONE who has to take that medication! As you can see from my previous postings, I had been taking 80 mg of Megace and I hated it too. I experienced MAJOR weight gain, hair loss and MAJOR mood swings. I would definitley ask your Dr if there is something else you could take. That medication REALLY SUCKS. Hang in there at least you know when you can stop taking it and it is only temporary.

    80mg? Try 620-something mg in a liquid suspension.

    My first dose of that began my PCOS journey.

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