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Starting Arimidex Thursday after 2 years of Tamoxifen

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

I started Tamoxifen in August 2010. I have felt crappy the entire two years. Extreme fatigue, bone and joint pain, sick all the time, couldn't get out of my own way. Thursday 9/20, I am getting my first Lupron shot to shut down my ovaries, and I am starting Arimidex. I am a little nervous about the shot and a new medicine. I guess I couldn't feel any worse than I was feeling, but I'm second guessing myself now. I know there is no turning back, and now all of a sudden I'm scared.

Has anyone switched meds like this? What was your experience?

Thanks,
Julie

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Julie, just wishing you good luck with Arimidex. Praying that it will be better for you and that you will have no side effects. I am not on Arimidex, so, I don't know anything about the side effects. Keep us updated on how you do on it.

Hugs, Leeza

debsweb18
Posts: 190
Joined: Jun 2012

Started it almost a year ago. Everyone's different, but I had a lot of joint pain, irritability and worse sleeping problems than ever. My MO just changed me yesterday to Femara. We'll see how that goes. But from what I understand, some people do better on one drug than the other. I have heard a couple of times that studies show that it means its working better when women that have more pain. Hope it goes well with you.

Deb

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

You read that??? Sheet!!! I hate taking anything to be honest. The Arimidex is causing joint pain and muscle aches AND irritability AND sleeping probs. Now if it could fix my attitude problem! LOL

I've been on it for 6 months now and I can honestly say I don't think I will be taking this stuff for 5 years. It's really hard to deal with.

debsweb18
Posts: 190
Joined: Jun 2012

A couple of times. Maybe on this board. I was on Arimidex for almost a year. No change from switching to Femara yet. I'm suppose to take it for 7-8 years. YIKES! I don't think I'll ever get a good night sleep and not wake feeling tired. If only I can retire so I can sleep in as long as I want! Just keep telling yourself, it hurts, it works, it hurts, it works! LOL I feel like an old lady when I stand up. Oh yeah I'm almost an old lady. Nah, can't be.

Deb

disneyfan2008
Posts: 5340
Joined: Oct 2010

sorry you are going through this..I hope it works out better. I just started my 5th and final year of tamoxifen.

I'll check back for update

Denise

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Tamoxifen really didn't work at all for me. The only thing I remember was very mild hot flashes and weight gain. When I first started out Tamo was the only hormonal drug available. Arimidex was a breeze to go through until I fell. I had 3 vertebra fractures from that incident. Those were the days before they knew that this drug had a higher incident of fractures.

Ask your doctor about bone strengthener drugs, Fosamax, Boniva and etc. This will prevent fractures if you fall. My fall was very minor to have cause the fractures. Bones need estrogen and so when you stop the estrogen, you needs something to make them stronger.

Femara, I had a lot of bone & joint pain. It was awful and aromatase inhibitors are know for this sort of side effect. Why I didn't have those pain on Arimidex, I don't know.

Had I been on it longer, I would have tried glucosamine & chondroitin which was suggested by so many women. If you have the bone & joint pain, try it. Ask your doctor first though.

Good luck to you. I have a strong fondness for this classification of hormonal therapy drugs. They have kept me on this planet for a good 11 years, (it includes one year when I stop the drug in hopes of rebooting it). I hope someday to go on Aromasin along with the new Afinitor.

Good luck,

Doris

sbmly53
Posts: 1470
Joined: Jan 2010

I wasn't switched, being menopausal, I started on Arimidex. Been on just over 2years. I have fibromyalgia and was concerned about se's. One of our sisters suggested keeping a journal so one could track what was really happening. I found this to be a great help, especially since my memory is so bad, I can't remember what I had for breakfast!

Anyway, I started out fine, but did have joint pain - mostly feet and ankles. It wasn't severe and it has subsided substantially. Hope you do well, still hoping to meet you!

Sue

New Flower
Posts: 3992
Joined: Aug 2009

Hi Julie,
After being on Tamoxifen for 15 months I was switched to similar combo Zoladex shot + plus Arimidex. I had more SE on Arimidex. You need keep walking it will help with joint pain, take bone density base line and keep monitoring it. Osteopenia and osteoporosis should be a big concern. Talk to your doc about prevention of it. You can always e-mail me. There is no SE which I have not had.
Good luck with it, I hope it will be easy for you
Hugs

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

I couldn't take Tamoxifen because of other meds I take, so I had my ovaries removed last Friday and see the onco tomorrow. I'll be starting Arimidex tomorrow or this weekend.
Let's keep each other informed on how we do!!!
Hugs,Joyce

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

I am hoping the switch in medication is easy on your system, body and soul.

Gentle hugs,

Vicki Sam

NJMom10
Posts: 176
Joined: Oct 2010

Hi Julie,
I took Tamoxifen for 1 year, started just as I started radiation. I had mild joint pain, confusion, not flashes and severe fatigue while on it, but for the most part, it wasn't too bad. When I became fully menopausal, I asked the onc to put me on Arimidex (I wasn't keen on the side effect from Tamox of increased risk of uterine cancer so I wanted to switch as soon as possible). The only thing I really experienced was an increased intensity of the hot flashes. They came on much stronger and more often, and I had 'night sweats', waking up drenched, more often also.

In the past 2 months, I started a regimen at the gym again. I go 5-6 times per week and try to do strength training 2-3 times per week also. Except for some joint pain and mild hot flashes, all the other side effects from Arimidex subsided. It took 2 months for me to get to a level of exercise where I feel strong again. Literally when I first started, I was pulling myself up and down the stairs to that gym. I was that weak and out of shape from the past 2 years of treatment and recovery.

So good luck. If you start to feel intense side effects, give exercise a try. It does seem to help a lot.
Barbara

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

NJMom10 glad you are doing well! I'm starting on Arimidex tomorrow and hoping the side effects will be ok.....I also joined a gym and will start working out to strenghten muscles..Your experience with these two things are exactly what I needed to hear!

JuJubeez----How are you doing? Did you get the shot and start the Arimidex yet? When you get a chance, let us know how your doing!
Big Hugs,
Joyce

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Julie, I'm triple negative so I don't know these meds but have you in my thoughts and prayers :)
Miles of Love,
Kari

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Julie, I'm triple negative so I don't know these meds but have you in my thoughts and prayers :)
Miles of Love,
Kari

DiggityDawn
Posts: 4
Joined: Aug 2012

Julie,

I was on Tamoxifen for 4 yrs. then they discovered my cancer had metastasized. They started me on Lupron shots and changed me to Arimidex. A few things....first how good is your insurance? The Lupron shots ran $6000.00 each shot and I was getting them every 3 months. I had to pay $2000.00 each time! So, I'd check to see how much your insurance is going to pay. I talked to my dr. about alternatives and he said he wouldn't suggest removing my ovaries, I don't remember why. I did this for a year and my bone pain increased and the hot flashes were ALL the time. I switched dr.s and the first thing she did was scheduled a surgery to remove my ovaries! It was the best thing. Not only do we not have to pay $10,000. every year but hot flashes have calmed down. I'm still on Arimidex and bone pain is still increasing but now all my joints are swollen and hurt. In the morning i have to wait till my pain meds kick in just to get out of bed which takes about an hour. I have to crack all my knuckles to be able to move my fingers. I wish I had better news for you but for me Arimidex is horrible. I hope it goes better for you.

Dawn

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

Thanks, Ladies. I appreciate everyone's comments. I did get the first shot in my hiney yesterday. I was nervous for nothing. It didn't hurt. I did get a bad headache yesterday, but I'm not sure if it was from Lupron or stress. I took my first Arimidex last night. I've felt okay today... no hotter or stiffer than usual. I have been going to the gym for the past couple months. I wasn't doing that with Tamoxifen. I'm hoping it will make a positive difference with the Arimidex. I will have my ovaries removed, but I asked if they would wait until I do a 12-week Biggest Loser competition at the gym. LOL. And my insurance is great, thank God. All I paid for the biopsies, surgery, and radiation was 10.00 office co-pays. No labs. My Arimidex is 10.00. I don't know yet how much the shot will be. I was pretty miserable most of the time on Tamoxifen.

Thanks again for your replies. I really appreciate hearing from all of you.

Bella Luna's picture
Bella Luna
Posts: 1571
Joined: Aug 2009

Julie... I have been on Tamoxifen for the past two years. There is no way of knowing how one will react to a drug until one starts taking it. Let us know how things go for you with Lupron and Arimidex.

Take care.

Compromising2
Posts: 15
Joined: Apr 2012

I've been on tamoxifin for about five months. The hot flashes are devastating. I started take black cohosh and that helps. I do experience joint pain. I try to walk frequently because it seems to help the pain. I wish you the best with your switch and hope that the side effects few and mild.

Ryleee's picture
Ryleee
Posts: 1
Joined: Sep 2012

that's about the same time I started Tamoxifen. I'm gaining so much weight and I'm also sick all the time...please keep me posted on how you do with this new experience.....

jennytwist
Posts: 724
Joined: Sep 2009

Hope you are feeling better every day!
I was on tamoxifen for almost a year - the chemo put me into instant menopause but they had me on the tamoxifen for my first year out.
I have just been switched from Arimedex to Aromasin to hopefully help with joint pain. I already have osteoarthritis so my Dr said it may be litte worse. I've been told to keep moving, which is sometimes really hard to do when it's hard to walk - but - it does help and keeps you from being too stiff to walk! If I sit tool long at work my knees don't bend when I stand up too easily but if it all keeps the beast at bay it's worth it!
I think we all react differently to meds so I'm hoping you feel much better on this.
I'm keeping you in my prayers!
much love,
Jenny
p.s. hows your little one doing?

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

Don't know why I said I was starting Arimedex....I just looked at my bottle and it says Femara...I think the chemo is still affecting my short term memory!!lol

Filled it last Friday, but I keep putting it off...tomorrow for sure..

Is it better to take these in the morning or at bedtime?

Hope your feeling good Julie,
Joy

jphilpo
Posts: 175
Joined: Mar 2010

I can so relate to your misery. I was on femara for almost a year and switched to tamoxifen after pain and depression. I have been on tamoxifen for two years and my dr. is giving me a 1 month break to rest my body and see if it gets any better. Work is hard because I never feel good and I know co workers are probably sick of my issues. It is so depressing. I am considering getting off the tamoxifen just so I can work. I really just don't know what to do. I KNOW I'm depressed. I just can't take another drug!

Jean

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

Jean,

I SO identify with your post. Tamoxifen made me feel like crap ALL the time. And I was always apologizing to my supervisor for being stuck with the sick girl. Everyone at work is nice, but I can't help but feel that they are as tired of this after two years as I am. And being home and sick makes me feel even more depressed.

Are you taking Effexor for your depression? It helps with hot flashes too. If you're not taking it, please consider asking your doctor for it. It does help.

Please let us know how you're doing. Hang in there. It will get better. Even though most days it doesn't seem like it can, it will.

jphilpo
Posts: 175
Joined: Mar 2010

I did try the effexor. I had severe headaches, so I couldn't do it. Very frustrating. I can't believe I;m considering stopping tamoxifen, but, how do I function at work??

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

So far, so good with the shot and Arimidex (please everyone, knock on some wood for me.) I started with taking the Arimidex at night, and I'm going to stick to it because I tend to feel a little nauseous a while after I take it. I sometimes feel like that first thing in the morning, too. I'm not having as many hot flashes, so far, as with Tamoxifen. I actually get cold sometimes. Yay! No joint or bone pain yet. I haven't missed a day of work since I stopped Tamoxifen 8/17. I was missing average of a day a month on Tamoxifen from not feeling well. By Friday every week, I was feeling like I was coming down with a cold. I don't have that now. BIG change! So for now, I'm going to keep on keepin' on!

Thanks, Ladies!

p.s. Jenny - Erin is awesome, thanks. Today is her 10th birthday! She has one foot in childhood and one foot in 'grown-up'-hood. She is still losing baby teeth, but can hold a conversation about cancer, estrogen, medicine, etc. Last night I was complaining about feeling a little queasy. She said, "Don't worry, Mommy.. it's probably your new medicine and you'll just need to wait until your body gets used to it..." I said Thanks, Mom. You're probably right! LOL

jennytwist
Posts: 724
Joined: Sep 2009

Arimidex goes well for you!
Wow - your little one is ten! I know what you mean about one foot in childhood and the other in "grown-up"-hood - happens so fast! Enjoy every minute with her - she sounds like such a sweetie - taking good care of Mom!
keep us posted on your progress with the Arimidex - so glad you got started on it!
much love,
Jenny

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Hoping and praying that you will do great on Arimidex!

Hugs, Lex

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I'm knocking on wood for you that you will continue to do great on Arimidex. It sounds like it is a lot better on you than tamox, which is good news.

Hugs, Megan

RozHopkins
Posts: 464
Joined: Dec 2010

Well ladies couldn't take any more Tamoxifen. The flashes were all the time and then felt hot inbetween any break I had. Even a watch on wrist or necklace made me warm. So I'm taking half a pill instead of a whole one..........I know, I know....... But the aches are better the tummy a little smaller. The osteoarthritis pain was all day and night which became nasty on this drug. Plus I now have teeth sensitivity so couldn't eat spicey food, cold or hot things, air con in the face in the car which I need to fightt the flushes would set teeth off, nothing acidic, tea or coffee a no no. If cancer comes back I will just have to deal with consequences. Effexor didnt touch the flashes but does for many.

eihtak
Posts: 839
Joined: Oct 2011

As said, everyone reacts differently. I have been on Anastrozole (generic Arimidex) for about 6months now along with Alandronate to help calcium bind to bones to prevent fracture. The first three months or so I was a bit uncomfortable with joint pain and trouble sleeping. I also read about so many side effects that I kept thinking I may have them all. Tho I am still a little sore at times it is totally doable for me. I feel sooooo much better when I walk, stretch, and so some light yoga. I know people kept telling me that, but sometimes I just didn't have the motivation, now....I rarely miss a day of exercise. Give it time, and don't skip the after dinner walk! Good luck, hope all goes well for you also.

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

Well, I've been on Lupron and Arimidex for about 3 weeks now. I feel a LOT better overall. My hot flashes are much better. I don't ache all over my body like I did before. I do seem to hurt worse from the left side of my side, all the way down my arm. I fell on it a few years before I had the lumpectomy/sentinel node surgery. Now it tends to ache like crazy. But I'd rather have just one area than my whole body. My leg and foot cramps are about half of what they were. I just really feel better overall.

I do think there's something wrong with my mouth, though. LOL. I don't seems to have a good filter like I used to. I wouldn't say that I'm grouchy, I just seem to speak my mind more freely. It's kinda nice (I guess because I'm not on the receiving end.)I can't sleep at night for anything, without some help (Benadryl not that I'm not on Tamoxifen, or a very low dose of Xanax), and I can't wake up in the morning.

I have been going to the gym for a couple months, but this last week I started a 12-week Biggest Loser program at the gym. We have 3 one-hour workouts a week. Pretty intense, but I feel so good afterwards. I tend to ache on the days I don't exercise. I go for my next shot on Monday 10/22. I will ask about Calcium. I'm not very graceful these days, I'm always running into or tripping over stuff. I have crazy bruises all over, that I have no idea how I got.

Thanks all for you help. I do think I could be on this for the next three years, where the Tamoxifen was just nuts for me.

New Flower
Posts: 3992
Joined: Aug 2009

I hope it will stay easy for you. My problems with this combo started after 4 months on it.
Keep us posted
Hugs

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

Dear Julie,

Know your body. Never assume that an ache or pain is due to advancing age. As one the girls stated in this posting, keep a journal of how you are feeling. Record date and describe any new feelings within your body.

Armidex affected my heel, knees, hands, and skin. Side effects did not begin until 4 months after taking the drug and escalated with each new month until I stopped taking it after being on it for 10 months.

I have met woman who were on Armidex who had very little side effects and some who had no side effects. Then, I have met women who had terrible joint pain and other side effects.

The important thing is to tell your oncologist of any side effects that you may experience.

Good luck to you. May you be one of the lucky ones who experiences no side effects.

Lots of Hugs,
Janelle

Intrepid
Posts: 7
Joined: Apr 2012

I did not take Tamoxifen, just started with Arimidex about 1 year ago. Happy to report no side effects. I am 67. No joint pain or anything. My friend who took it also said no side effects either. We take it in the morning. They just like to check for bone loss once in a while. So far I'm good. Good luck!

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