Lupron and Arimidex- side effects

Shawnp1016
Shawnp1016 Member Posts: 5
edited December 2019 in Hormonal Therapy - Before, During, and After

I haven been on a combination of monthly lupron shots (to suppress my ovaries) and arimidex since February. I am 40 and am officially in medically induced menopause. I was on Tamoxifen for 2.5 when the dr discovered it was causing liver damage. Unfortunately, the only option I had was to be medically induced to menopause. My problem now is the side effects of arimidex and lupron. My joints and bones feel like that of a 70 year old woman, not a 40 year old. I have gained 15 pounds (mainly around my mid section) and have got flashes as well as night sweats. I am in a nut shell miserable :(. So miserable that I have considered going off everything even though I know that is not the best decision for me. Any words of advice or alternatives? Thanks

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  • glowgene
    glowgene Member Posts: 37
    edited June 2017

    So, I'm on Zoladex and arimidex but, as far as I know, the side effects are quite similar between lupron and zoladex. Hot flashes, joint aches, insomnia, fatigue, night sweats etc.

    The side effects (for me) were at their worst about 2 months into treatment. I was barely sleeping, hot flashes every 15 minutes, lots of pain. I'm now 5 months in and the SEs are starting to get more bearable and I've made some lifestyle changes that help a lot. I got lighter pajamas and crank up the AC at night. I take turmeric and calcium/Vitamin D supplements that seem to help with the pain and discomfort. There are still bad days, but I'm personally willing to deal with them in order to decrease a recurrence risk, no matter how small. You may decide differently, and there are others here who have happily made a different choice and don't regret it.

    When I first started taking arimidex/zoladex I found this thread (https://community.breastcancer.org/forum/78/topics/790338?page=474#idx_14212 ) and several posters suggested that their side effects started to level off/get better around the 6-8 month mark. I told myself I would give it until at least 8 months before I gave up. I'm really glad I did. Not everyone has nasty side effects and not everyone gets to a place where the side effects are tolerable, but my advice (from my experience) is to stick it out for at least a couple of months and see if you can get over that initial hump.

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  • Shawnp1016
    Shawnp1016 Member Posts: 5
    edited June 2017

    Thanks glowgene for you response. I know it would probably be best to give it a few more months. I am just super frustrated, mostly with the bone/joint aches and weight gain. It just stinks. I am meeting with my oncologist next Friday and will discuss with her my options. Maybe Zoladex is a better option for me than Lupron. Have you had weight gain? thanks!!

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  • glowgene
    glowgene Member Posts: 37
    edited June 2017

    You are most welcome, Shawnp1016!

    I have not gained weight...but I have much more significant influences on my weight than arimidex (PCOS, years of diet and daily exercise, other medications etc.) so it's quite probable that I would have if I didn't already devote an unreasonable amount of time to minimizing weight gain. I know there are others that are struggling with this.

    As for the days with the worst pain: my primary care physician was willing to get me a prescription for percocet to help with those days. I was hesitant at first to try an opioid, but I use it sparingly and only when the pain is preventing me from working or going to the gym. Maybe your PCP would be willing to do something similar for you?

    Also, I know there are other women who take Effexor for the hot flashes and mood issues. I have had trouble with Effexor in the past and I am not willing to take it again, but some others swear by it.

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  • Falconer
    Falconer Member Posts: 1,192
    edited June 2017

    Hi- I'm taking Lupron and Aromasin. I did gain ten lbs, but I was really wiped out from rads and working so that I think it was a part of it. Ten lbs is almost 9%of my body weight so it is very noticeable on me. I'm also using the supplements mentioned above along with practicing yoga and keeping up with running. I recently had DIEP Flap surgery and took an Aromasin holiday for a week. Not only did the aches and pains and hot flashes stop, but my libido returned (oddly bc I was in no shape for sex) in my dreams (literally!). Aromasin (Exemestane) is different from arimidex so it is another AI to try if you can't stand he one you're on. Sorry to hear that Tamoxifen didn't work for you. Good luck!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Hi Shawnp!

    I've been on Zoladex and Aromasin for over two years. In terms of day-to-day living, I feel fine, though I do have warm flushes four or five times a day. I have gained ten pounds since chemo, but recently increased my exercise (hour of swimming every day), so hopefully I can gradually lose some of that weight. I was initially moody when I started doing hormonal therapy, but Celexa took care of that. I'd say the worst side effect has been osteoporosis. I'm not even 50, and my dexascan last Friday shows that I have full-blown osteoporosis and am at high risk of a fracture. I will meet with my new oncologist in early July. It might be Prolia-time for me. In addition to strengthening bones, Prolia also helps prevent bone-mets, so there's that. But, I'm already on six medications; I can't say I'm looking forward to my seventh! Best wishes; I hope you find something that works better for you.

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  • Tiffany42
    Tiffany42 Member Posts: 1
    edited June 2018

    Hi. I feel I am in the same boat. I never tried the Tamoxifen because of the possible side effects. Currently I am taking the Lupron shot every 3 months and the Arimidex. I am 43 and have been doing it for about a year. I took 3 months off of everything January, Feb. and March of 2018. I wanted to try to get a baseline and just be me for a while. I also was going to surf camp in Nicaragua in Feb. and didn't want this medication bringing me down. I hate it! I feel like the first 3-4 days after the shot are the worst. I shared this with my oncologist and he suggested talking to my OBGYN about laproscopically removing my ovaries so I am meeting with her next week.

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  • meg2016
    meg2016 Member Posts: 287
    edited July 2018

    I ended up doing the ovary removal because I hated the side effects of the lupron and the long term plan was to be on it until confirmed menopause, which is hard to determine, probably 10 years. I've not regretted it, I am 41.

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  • Polly_Ester
    Polly_Ester Member Posts: 34
    edited July 2018

    I'm taking Arimidex and did about 2.5 years of Lupron shots.

    I eventually just couldn't stand Lupron anymore so I had a radical hysterectomy. I don't know if it's just psychosomatic but I felt better almost immediately.

    Still getting hot flashes regularly. And my mood is ridiculous.

    I'm 34, never wanted to have kids so my fertility isn't a big loss for me.


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  • Meal1980
    Meal1980 Member Posts: 4
    edited July 2018

    Good Morning Ladies! My first time posting... Mostly stressing over the decision to take Lupron + AI.. Needed to come off of tamoxifen in February bc it was damaging my liver. Right after that I discovered uterine polyp which was SOOOO painful during my periods. Nobody told me of these "rare" SEs before I took tamoxifen. Was just warned of menopausal symptoms. Now... almost 6 months off of it and I feel like ME again. I didn't even realize how terrible I felt before. Depression has lifted. I'm not so tired and achey all the time. I'm a better wife and mother to my three little ones, I'm sure of it.

    So i'm just terrified that there will be some "rare" and/or irreversible SE of Lupron or AI. I so badly want to put cancer behind me and live my life. Of course I don't want a recurrence either. My OB suggested setting a small goal, like treatment for a year or six months... and I get that strategy... but I'm so afraid of what these drugs will do to my body. Thankfully my cancer was caught early and node negative. Need a pep talk or advice or something... maybe I just need to whine to people who get it. IDK! Whaaaaaaaaa! Is it selfish to just say F*CK those drugs ?!?! My youngest child is 4. Any thoughts?? Anyone have a really terrible or really good experience with these drugs?

    much love to you all! happy friday!!


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  • Blissful1
    Blissful1 Member Posts: 2
    edited September 2018

    just thought I’d post because I went through the same agonizing decision to take lupron and arimidex. I did all the research beforehand and honestly could not find ONE SINGLE positive report from anyone. This got me thinking that maybe the ladies that are not having problems aren’t sharing on this website simply because they are fine and just living their life. I’ve now been taking lupron (every 3 months) and arimidex for 3 months and have had a really positive experience! I do have what I would call “warm flashes” a couple times a day, but nothing like I’ve heard other women describe. My mood has been fine and I have not gained weight, although I am an avid exerciser so maybe that helps. Maybe a few nights where I felt more sleepless than usual. Tomoxifen had me way moodier and came with the risk of more side effects. I have been pleasantly surprised by the ease at which I’ve adapted to these drugs. The good news is, if you have a bad experience you can stop taking it and you will go back to normal. Talking to other women on these posts is so helpful, just rest assured that there are people out there like me that have had positive experience
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  • pbarber42
    pbarber42 Member Posts: 1
    edited September 2018

    Hi girls,

    I understand the issues - I'm 3 years into hormone therapy - first with Tamoxifen and that little pellet they inject into your belly skin. If I wasn't on so many meds I'd remember what that was called. Now I've been on Arimidex and Lupron for 2 1/2 years. I'm exhausted and achy ALL the time. I AM older (58), but still. I'm widowed and am working to stay in remission only because of my grown children. I promised them I'd do everything I could to stay alive. My cute little husband died suddenly 4 years ago of a heart attack and even though the kids are grown, they'd rather have a mom than not. Actually, I blame the stress of his death on my cancer, but that's another story. :)

    I wish the 'new normal' was a more energetic and less painful normal. I understand toying with the idea of quitting our meds so that we'd feel better. The questions is, though, (and maybe I'm missing something) if we get off our meds, and we have a recurrence - wont' THOSE aches and pains and hassles and side effects be more awful than what we've got now? Also, there's the love/need issue. Our folks need us. I think my husband is at some beach bar in the great, wonderful cosmos - he's holding my drink and waiting for me. But I've got people here and things to get done before they'll let me go meet him though (apparently).

    Also, I'm lazy and kind of scared of the recurrence. If it comes, it will be a total pain -- testing, infusions, surgeries, money, yada yada yada.

    Maybe by sticking to these current meds I'm taking the easy way out, the easier road?

    You lovelies do everything you can to stay well!

    You're smart and beautiful and strong. You can do this! Do your research and make smart decisions for you and those who love you. Whatever you decide - sincere best wishes to you. I appreciate you letting us know what works.

    Hang in there, sisters. <3

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  • Soulsmile25
    Soulsmile25 Member Posts: 6
    edited December 2019

    I realize it’s been a few years since these posts. I’m starting this cocktail of meds. I’m 42, recently married and have 3 young kids. I’m soooo scared. Would love to hear advice, what helped you over the hump, how did you cope with the mood swings, etc.


    Thank you!

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2019

    Soulsmile -> This thread might be helpful. I was part of it for my "short" stint on Lupron. Great people and good info. Unfortunately I discovered that I'm in the less than 1% of the population that has an allergy to ovarian suppression meds. You can read all about that 'fun' time over on that thread, if you like. I hope you will have the best outcome possible with your own journey in OS land. Good luck!


    Women On Ovarian Suppression Unite

    https://community.breastcancer.org/forum/78/topics/870169?page=14#post_5492387

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  • Shawnp1016
    Shawnp1016 Member Posts: 5
    edited December 2019

    Hi!

    Since my original post several years ago I am not officially OFF all drugs. The cocktail of Lupron and Arimidex was terrible. So bad, that I opted to go back on Tamoxifen and see a Liver specialist that would check my counts every couple of months. I just finished 5 years of Tamoxifen on October 31st and am officially drug free. I wish you nothing but success on your journey. I too was your when I was diagnosed (37) and have young children. It is very hard to navigate all the information that is out there. This forum has been a great help to me!

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