Starting Arimidex today (July 15, 2015)

JaneQPoppy

I'd appreciate any helpful tips, like what time of day do you take it, with/without food, is it okay to take before bed?

I'd really like to hear from people who had no problems with it, as I've been freaked out by the discussions of side effects. Apparently some women have no bad side effects?

My oncologist minimized the possibility, as well as the number of side effects...but the reality of what I've read here scares me.

Thanks in advance.

muska

Jane, just start taking it. Most women don't have any serious problems with it. Check this thread: Hormonals - no side effects

AussieElaine

Hi Jane, I have been talking Arimidex since Christmas and have only had some mild hot flashes and insomnia. I take mine in the morning after breakfast. I am very active and also take magnesium, calcium and Vitamin D3. You will probably be fine. I was really afraid of it but thought if it reduces my chance of recurrence then I would rather put up with SE's than deal with what our stage IV sisters so bravely live with.

OxfordLady1

Jane Hi....I'm with you as I just started yesterday - so far nothing much has happened - I'm wondering how long it might take to see some SE issues....anyway, stay in touch and we'll give each other the support we need - best wishes for an easy ride with this stuff! I'm taking Anastrozole 1mg per day...

JaneQPoppy

Thank you so much, ladies, for the replies.

---

38 minutes ago OxfordLady1 wrote:

Jane Hi....I'm with you as I just started yesterday - so far nothing much has happened - I'm wondering how long it might take to see some SE issues....anyway, stay in touch and we'll give each other the support we need - best wishes for an easy ride with this stuff! I'm taking Anastrozole 1mg per day...

---

(My bold)

OxfordLady1, are you taking the generic?

Does your name mean you actually live in Oxford, England?? If so, can I come and visit you? I love Inspector Lewis and Endeavour on PBS and have often gone to Oxford on Google Maps and just "walked" up and down the street. Seems like a beautiful city. I used to have a secretary (back in the day when people had secretaries) who had worked at Blackwell's.

And if AussieElaine is from where her name indicates, we've got the globe covered.

50sgirl

I have only been on Arimidex for 2 1/2 weeks, but so far so good. I have had some hot flashes, really more like warm flickers. They seem to be lessening the past couple of day. I take mine with breakfast

OxfordLady1

Yes Jane I actually live in Oxford! Came over from the States eight years ago after losing my husband to Lou Gehrig disease....I'm half-English (mother) so I have dual-citizenship and I just love living in England - Of course you can come and visit me...maybe we should plan a six month anniversary if we make it that long on these tablets.

This is the first time I've had to navigate the NHS and so far I've been very pleased with my care - being in Oxford means the hospitals are teaching hospitals so I'm with a breast cancer center.

I read the article mentioned and it would seem that about one week after starting to take the pills the blood level is constant in terms of dosage - so we'll just have to see how we do after a week or so - fingers crossed that we're both lucky with the SE - I am on the generic called Anastrozole. XOXO

JaneQPoppy

Good info, 50sgirl. Thanks. Hope it keeps up that way.

I never had hot flashes when I went through menopause 16 years ago. Take that back-- I had two within a minute of each other and that was all.

AussieElaine

hi Jane, yep, I live in sunny but cold (atm) Australia. Oxford lady, you will not believe this but I was in Oxford a month ago having LVA surgery for my lymphoedema. Believe me I would gladly swap anyone's Arimidex SE'S for this hateful SE of BC, I am hoping and praying that this surgery will work. How are you traveling on Arimidex?

OxfordLady1

Only three days in so far - but all okay! I can't believe you were just here...how amazing - were you at the Churchill or John Radcliff?

Dromedary

Hi Everyone, seems like we're going to have a pretty international group - I live in Rio de Janeiro but am currently in the UK as my son got married here last week (I'm also half British). I'll be starting Arimidex in about 10 days or so. My ONC first said to wait till after the wedding, then when i said I had a trip to Berlin planned for after the wedding he said to wait till after Berlin!! Scared the life out of me, so I'm sort of dreading it now.

Anyway, I will check back with you all after I start. It's great to be getting in at the start of a group like this and I look forward to more interaction soon. Meanwhile, best of luck everyone - I hope our journey will not be too difficult.

suzygirl

I've been taking anastrozole for 17 months with no really bad side effects. I had slight nausea in the beginning right after taking the pill *I take it at 8 p.m. and set my cell phone alarm to remind me, I had frequent and moderately bothersome hot flashes and night sweats for about 6 months but they have steadily decreased and are rare and mild now. Only weird thing was a depression -- no pleasure in anything -- that got steadily worse from about the third month over six weeks -- and then spontaneously and completely disappeared overnight. Really!! So, in short, even if you do develop some problems (and many women have none) , stick with it. Your body will likely adjust. The drug may cut in half the chance of a relapse, and that is worth putting up with some blips along the way!

AussieElaine

Hi Oxfordlady, I was at the Manor Hospital which is part of the Nuffield group. It's a private hospital as even though I am British by birth, the NHS only covers this surgery in some areas and even then it's very difficult to get the funding approved. So my DH paid for me to have it done and I am very pleased with the results so far. I go over to the UK every year to visit family and the Dr's who performed the surgery would like me to come back and see them, so who knows I may be able to see you in the flesh as it were.

Hoping all of you lovely ladies are not having too many issues with Arimidex, I have been fine so far.

JaneQPoppy

Welcome aboard, everyone!

Glad to hear that your side effects were minimal and manageable, suzygirl. That depression thing was weird-- must have been a very bad timefor you.

I'm only three days in, so nothing yet.

dtad

Hi everyone. Just saw my MO. She wants me start the Arimosin ASAP. When I told her I was terrified of the side effects she looked at me like I was crazy. She said the majority of women have no SE. I would love to hear from those women! Maybe even start a new thread. Thanks for sharing. Diane

Claire_in_Seattle

I finished my 5 years a couple of months ago. Nothing major but I did have some achiness. I am very active and just completed a 200+ mile cycling event last weekend. This is now 9 for 9. I would certainly do the course of anastrazole again. I was overjoyed when it went to generic, which was 5 years ago as meant I paid ~$10 per month vs $130.

I will have a bone density check in a few months to make sure all is well. Was just fine half way through.

I lead a rich, full life which includes seeing a much younger guy and the best work of my career.

I will say that post treatment, exercise is critical. I do weights and crunches every week day. I cycle, walk, swim in lakes, run, and ski. Oxfordshire, and Gloucestershire have amazing walks...I have done many of them. Wonderful for the spirit, on top of the health benefits. I also know you can cycle the 29 miles to Banbury along the tow path. Or walk in the Botanical Garden.

I think I will do a hike tomorrow near Mount Rainier to see the view plus I have never seen the mountain lupines in full bloom. I may swim in the mountain lakes too, something else I have never done. Last year, it was later when in the summer I did the hike with my guy so missed the lupines. I will say that the Cowlitz River was "bracing", but I did the swim!

Saying all this to let you know that it's also important to focus on living. Just so important as we go forward. And not let a few minor symptoms get you down....why ibuprofen exists. Can't wait to see those lupines!!! - Claire

SweetHope

I started on Teva brand Anastrozole the night of 7-14. It took several days to locate a pharmacy that carried the Teva brand. I learned here that brand has fewer SE's, so I wanted to start with it. MO said it is usually trial and error until you find the right drug, but so far, knock on wood, I have had no problems. (I went through menopause years ago, so the hot flashes are behind me.)

Claire in Seattle, I have only visited your beautiful part of the country once. It is the exact opposite of southern Louisiana. You are an inspiration

OxfordLady1

Aussie Elaine you must contact me if you come into Oxford to visit your Drs.....what is an LVA? I'm hoping I won't have lymphedema from the radiation treatments coming up in a few weeks time - meanwhile, five days into Anastrozole and absolutely no side effects whatsoever....could I be that lucky? If this continues I won't care if I stay on this stuff for the rest of my life....maybe my estrogen levels weren't that high to start off? Anyway, fingers crossed it continues to be easy to take.

JaneQPoppy

Claire in Seattle, your post was truly inspiring! I'm not even close to being that active... I was the kid who was always trying to get out of P.E.! It's great to hear that you had minor side effects.

I don't know all that much about breast cancer, being truly new to this gig (as many of us are) but I notice that yours was estrogen-positive and progesterone-negative. Is that unusual?

lyzzysmom

I have just taken my third pill. I quit Tamox after 4 months but my primary care and new onc pursuaded me to give this a try. I am more scared of the side effects than BC and so far so good although I was not expecting anything yet. I have been depressed the last two days but I think that is due to having a great few days away with a group of strangers enjoying my hobby. I felt just like my old self from 20 years ago, happy and joking, just a little frailer. I got back home to my regular life and negative DH and the depression hit me. I think its situational rather than the AI so will see how it goes.

Rums54

Hi! I started Arimidex on June 7. I take it at night, just before bed, when I took it in the morning, I had insomnia. I have had no problems since. I read too much about bad side effects and wish I didn't. Good luck!!!

Rums54

Hi! I started Arimidex on June 7. I take it at night, just before bed, when I took it in the morning, I had insomnia. I have had no problems since. I read too much about bad side effects and wish I didn't. Good luck!!!

Claire_in_Seattle

Too late on most of the lupines, but there were other flowers...and huckleberries. Wow, was it hot!!! So took things slowly. Loving my new hiking poles. Major difference. Picture from today. The whole hike was inspiring!!! Except that I didn't get to swim, but will do that tomorrow. - Claire

JaneQPoppy

Has anyone experienced dizziness with Arimidex? I have for the last few days at night mostly before bed (like now), but it could easily be due to something else.

AudreyB

Hi everyone!

I started anastrazole June 1. I kept a diary of all possible SE's. Every day there was something, but all pre-existing stuff so I couldn't really tie it to the drug. And I was driving myself crazy looking for something. So I stopped the diary.

So far, so good. I did switch to Teva brand the 2nd month, Stop N Shop was more than happy to accommodate me on that.

I feel good, slight heartburn once or twice, I was taking it at night but had insomnia, now I take it in the morning.

Also, I have lost 15 lbs since BMX May 6, following WW and going to meetings, so weight gain has not been an issue.

JaneQPoppy

---

2 hours ago AudreyB wrote:

...I did switch to Teva brand the 2nd month, Stop N Shop was more than happy to accommodate me on that.

---

Why did you switch after only a month, if you couldn't pinpoint any adverse side effects? Or

was it cost?

Also, I'm guessing Stop N Shop is your local grocery store with a pharmacy?

Can someone clear this up for me: anastrozole is the generic name of the drug, right? And Arimidex and Teva are BRAND NAMES? Is that correct?

BTW, dizziness IS listed as one of the side effects of Arimidex. I was really feeling it last night. Lying in bed with the room spinning. This morning it's less. I guess if I have to have it, at night is better than in the daytime. I hope it goes away. Today I'll take my 6th dose.

JaneQPoppy

Here is a thread from 2009 discussing Arimidex and dizziness/vertigo.

SpecialK

Arimidex is the original drug name, the generic name is anastrazole, Teva is not a generic name but rather a manufacturer, among several.

AudreyB

Hi Jane Q. I filled my RX for anastrozole and then found a thread talking about the Teva brand (Anastrazole manufactured by Teva Pharmaceuticals). As I had already picked up my RX, I started taking it, then refilled for the Teva brand for the next month. I just want to give this the best shot I can and followed all the advice about Teva brand having purer compounds. Also, I believe Teva was the first pharma co to produce generic Arimidex (anastrazole).

And yes, Stop N Shop is a supermarket chain here in New York.

Hope you feel better.

JaneQPoppy

AudreyB, interesting about the Teva brand. With all the reading I've done, this is the first I've heard of it.

I didn't experience the dizziness last night. Not sure how to interpret it. Maybe it's not the Arimidex. <shrug>

Note: I hope people will feel free to check in here and post even if it's something short and not earth-shaking. It's helpful just to know that others are out there on the same path.

JaneQPoppy

Tomorrow it will be two weeks that I've been on Arimidex. The dizziness was short-lived and hasn't returned. Maybe related to something else. I've felt a little pain in my right hand, but I DO spend lots of time on the computer.

I've been reading some other breast cancer boards, and apparently, the side effects--- even severe side effects--- can show up after a couple of years.

Is anyone still reading this thread?

ruthbru

I did 5 years with no problems. I was a little achy at first, but just kept moving and everything settled down pretty quickly. I'd say within 6 months I was feeling normal. I second the recommendation to keep up with the exercise, which is good for your both physically and mentally.

AudreyB

JaneQPoppy, I started taking it at night going to bed and I was not able to fall asleep. After a few weeks I started taking it in the morning, and fall asleep a little better, I wake up a lot, but I think that's because of the expanders.

I take it with my coffee in the morning, no food.

So far, so good, just started my third month. A little achey in the thumb area but I had that before the arimidex. Can complain about much.

JaneQPoppy

I've been taking it at dinnertime. Might have to change that. Had a really bad night last night.

gypsyjo

I'm still reading this thread along with a couple others along the sames lines. I haven't really posted as it seemed this one wanted more of the positive experiences. I have posted on a few of the others that deal with side effects. I have been on anastrozole for 4 months now and have my share of side effects. I am doing this one month by one month seeing what gets worse, what gets better and I can do to lessen the side effects.

JaneQPoppy

Gypsyjo, please share your experiences. I'd like to hear about all side effects. I had a hard time navigating the really long threads about side effects- the ones with thousands of posts. So, by all means, what's happening with you?

Today I've been having shooting pains in my breast all day. Like a needle being driven into my nipple. I've had that before but not constant like this.

Suladog

Jane,

I've been on arimidex now for 3 months and I'm doing just fine, no SEs to report. I was very scared before I started but the ladies here assured me I'd likely be just fine and in my case they were right

AudreyB

it's so nice to see familiar faces. Hi everyone.

gypsyjo

Jane, Occasionally I get a stabbing pain in the breast, but it seems to be the nerves repairing, not from the AI. I also have some pain on occasion going around my ribcage to my back. I occasionally massage my lumpectomy area and find sometimes that irritates it. I think that is just the continued healing. Your surgery was around the same time as mine was so healing might explain some of your discomfort.

These are the side effects that I have noticed. The first month Anastrozole was manufactured by Accord. The next 3 months by TEVA. I made notes of the level on a scale of 10 at the 6 week dr appt and at 3 months. I have varied times and found no difference. Things that are 2-3 are a nuisance. Anything at level 5 I find a concern.

Bone Joint Pain 5-6 of 10 at 6 weeks, 4 at 3 months. (Prior to medication I had arthritis in my knee, hips and big toes at a 2-3 level). On Anastrozole I for the first time have stiffness and pain in my ankles, wrists, thumbs and one outer pinkie. The original areas have worsened. I started Gently Yoga 3 weeks ago and the level has lessened to a 2-3 but still all areas effected.

Hot flashes 2-3 of 10 at 6 weeks, 3-4 at 3 months. I never had them with menopause. I find it wakes me at night so insomnia, fatique and depression. I think these are all related to the hot flashes and getting up in the middle of the night.

Weakness 3 at 6 weeks and none now.

Fatique 3-4 at 6 weeks, 4 at 3 months.

Insomnia 4 on a scale of 10 both at 6 weeks and 3 months.

Depression 3 out of 10 at 6 weeks, 4 at 3 months. Some may be related to the insomnia/hot flashes and having dealt with cancer. Since dx I think I was worried and depressed, but since Anastrozole its not so much worry/depression but total loss of joy. I d haven't experienced it since a few weeks on the drug. I used to be a joyous person, but I can't find that anymore. Lack of joy is not me.

Constipation 2 at 6 weeks, none now. (V8 and dried fruit works wonders)

Headaches none at 6 weeks, 2-3 at 3 months. I never had headaches before in my life.

Dizziness none at 6 weeks, frequently feel light headed now.

Dry Eyes 2-3 out of 10 at 6 weeks, 3-4 at 3 months. I am using Liquid Tears and it seems to help.

Short Term Memory/Mind Fog 5-6 out of 10 at 6 weeks and 6-7 at 3 months. This is the one that bothers me the most. It wasn't even on the list of side effects on the comparison chart on this website. I have mentally juggled details and schedules for all of Nike's websites and now frequently have problems getting out the door with my glasses, keys, driver's license and credit card. i was also driving the other day and couldn't recognize where I was. I drove a couple more blocks I figured it out. It was a route that I have frequently driven for years. It might be due to the fatique and insomnia, but a definite difference that is noticeable to people other than me.

Bone Density - my baseline is -1.4 which is osteopenia. Have upped my calcium.

Cholesterol unchanged, but needs to be closely monitored. I had some mini strokes a few years back and need to reduce my overall cholesterol below normal. I'm not doing too well. I am afraid this might change it along with quitting my statins when I found that long term use of statins increases my chances of breast cancer considerably.

All the other potential side effects I haven't experienced at this point.

I've been trying to track my side effects along with looking for other reasons for what is happening. I looked at all the hormonal therapies and side effects along with doing quite a bit of reading of side effects from lack of estrogen. I found reading about lack of estrogen very helpful in understanding that it isn't the pill that is causing me the issue. It's from not having enough estrogen for my body's functions. In other words, since the pill is doing this job, so this is what is happening to my body. I'm trying to address each of those one by one.

So I'm trying Yoga, taking some naps, have signed up for a clinical trial on Accupuncture for Hormonal Therapy Women through the Army of Women (Dr Susan Love). I don't know if I am accepted yet and may end up in a sham accupuncture group or potentially the real accupuncture group. I figured I have nothing to lose and may help move treatments forward. My MO recommended accupuncture but insurance won't cover.

With my pathology of mucinous cancer, my MO said to consider AI, but did not fall under the recommend. Being ER+ 100% I want to try. I'll go month by month. I am hoping my body will adjust to the lesser side effects and I find solutions to address the ones of more concern.

JaneQPoppy

Gypsyjo, thank you so much for that very detailed account of what you've been experiencing. I'm curious about how receptive your docs are to that level of reporting detail. I would hope they would be very interested and commend you for making their job easier. Alas, my (and others') experience with doctors is that sometimes they are annoyed if you seem to know more about your body than they do. <shrug> It's a reality.

Also, you're seeing your docs for followup pretty often. Yesterday I saw the radiologist and she said I don't have to come back for six months. Likewise the medical oncologist. I saw her once right before the surgery, then once more three months later, and my next appointment is also six months from now! They want me to call if I'm having any problems, sure, but is this normal?? To see the oncologist twice a year? Just seemed odd to me.

You and I did have our surgeries around the same time, but due to complications I didn't start Arimidex until two weeks ago. I think you're right, that it's the estrogen blocking that is causing some of the symptoms, not a direct side effect of the drug. Like you, I didn't have much in the way of menopause symptoms when I went through it 16 years ago.

Re Gentle Yoga, do you do this on your own or do you go to a class?

gypsyjo

Hi Jane,

I do find that having a list with documentation over time carries a lot of weight. I try to figure things out on my own and they help me solve it. My PCP addresses my other health issues and won't tell me what to do cancer wise referring me to my MO. My MO won't tell me what to do about my other meds that conflict with cancer health and refers me to the PCP. I finally set up a meeting with my PCP to update him on my health post cancer treatments and about what meds I have dropped that he prescribed. We discussed the irony of my stroke meds increasing cancer and my cancer meds increasing strokes. It's sort of choose your own poison. We had a serious discussion of tradeoffs with me flat out saying I don't want cancer, but my ultimate goal would be to get off all meds. I stopped my statins and blood thinners, still keeping the low dose aspirin as it helps both and will monitor cholesterol every 4 months. My MO says the most important thing I need to do to fight off cancer is to excercise. If my side effects from AI interfer with that I should drop the AI. He is willing to work with me to resolve my issues.

Unfortunately my MO is changing hospitals so need to decide whether to follow him and create a third set of medical records or try another recommended MO at the current hospital. I am realizing that the changes in the medical field almost require you to be the manager of your health care. In another month or so, I will make an appt with the new MO, my updated side effects in hand to check them out. The hospital running the acupuncture trials is where my MO is moving to. I also plan to check them out.

My follow-up schedule is very similar to yours. I just plan on a few more done at my request as I gather more information and have more questions. At this point I have maxed out my out of pocket costs so I want to work out all my health issues as much as possible this year. I think the schedule is completely normal. That is the least that they want to see you with their questions that they want to follow up on. If you have more to discuss, understand or get checked out, you can be the one to initiate.

Per no issues during menopause, I wonder if we had more estrogen than many so had no side effects. Having more may have also led us to get breast cancer. I wonder if studies have been done on that.

For gentle yoga, I checked on a few places in the area, then went to Groupon to see who had introductory offers so I could try a variety. I do the Gentle Yoga 3 times a week, but find I the Monday instructor doesn't match my body needs as well as the older instructor does on W and F. I'm trying a few others at the center while my $30 special lasts. I have bought a few gentle yoga DVDs and some yoga props that I found useful in class to supplement. I figure I will do a combination of class and at home supplemented by walking and excercise bike. I found the environment is very important to my enjoyment. The class is on a upper floor building with 3 walls of windows. The views are tree tops, clouds, the sky and birds. I found it really gets me in the mood. I am also setting up a yoga center for myself in the livingroom looking out on my forested backyard. For walking, I try to get to the local nature reserve trails that are 15 minutes away. I am trying to indulge my senses to keep going forward. As my health improves, I will decide month by month what meds to take, tracking it all the way.

I hope all your complications are cleared up. I also hope you are one of the lucky ones without side effects or ones that are manageable. I am lucky to be in a position in life where I can focus on myself and what my body needs. Though once we go through all of this, what other choices do we have? Wishing you well.

Jo (Where in Texas do you live?)

Marie711

For those with an iPhone or iPad the yoga studio app is fantastic. I'm 57 and overweight and had never done yoga but I can do the beginning programs. She explains it well enough I don't have to watch and her voice is soooo relaxing! You can use their music or add your own, use pre set programs or make you own from a list of poses. Best couple of dollars I have ever spent. It even has a couple of relaxation programs where you just lay down and listen.

Yoga Studio by Modern Lotus
https://appsto.re/us/gg31H.i

gypsyjo

Thanks, Marie. I will be following up on that. I'm hoping to find a mix that works for me over the long run. I have more than 50 lbs to loose and am focusing on just feeling better overall. My favorite part though is the meditation at the end. I figure its my reward for all the rest.

Jo

JaneQPoppy

Gypsyjo, you are one smart and pro-active patient. Some doctors love that and some hate it. I have a dear friend who has many health issues from birth and he has had doctors outright scold him for doing research. One accused him of trying to self-diagnose, and another one called him his nemesis. Very painful to hear that from the people who are supposed to be supporting you.

My complication was a seroma that filled with fluid then burst through my already-healed incision. For three months I was packing it with sterile strips twice a day-- I mean using a q-tip to shove about 10 inches of gauze directly into the hole in the underside of my breast. I didn't think it would EVER heal, but finally it has.

I also have three sets of medical records. Oddly, two of them are in the same system, but that system started out as two systems, and everyone admits that when they merged, neither one would give up its recordkeeping software. And while most of the records can be see by staff in either system, one thing they can't see is appointments. That was for the surgery and mammogram. I'm going to a third system for the treatment (radiation and beyond). Those records don't interact with anyone else's. Craziness.

I have a PCP, but I've only seen her about three times in my life and the last time was over two years ago. I've never been sick before this. I'd like a real PCP who knows me and follows me, but this woman is not likely to be it. Long time ago, I had an actual family doctor that I went to for 30 years. I didn't have major things, but she knew me and followed me. I had to go elsewhere because of insurance, and in the meantime, she has died.

You really do have to take charge of your own care and recordkeeping.

I switched to taking Arimidex in the morning, so maybe that will help with the restless sleep.

Jujube2

hi! I've been on exemestane for two years now with no major problems. I do have stiff joints when I get up in the morning, that's it.

I take with breakfast .

Pheasantduster

I have been on exemestane for the last month after stopping (for a month) letrozole for stiffness in joints esp legs. Only took a couple of weeks for symptoms to come back but more prominent. I cannot sit for resonable amount of time (1/2 hr) and find it difficult to get out of chair. Only one example. Sleeping has become difficult which makes me so tired. Am really thinking about quitting. This is my 3rd try on meds -

JaneQPoppy

Pheasantduster, you said this is your third try on meds. What have you tried and over what period of time? You must be ready to scream... Did you try Arimidex?

gypsyjo

I hear you Pheasantduster about stiffening after sitting. It takes me forever to get out of a restaurant booth and then I sort of waddle side to side until it loosens. I also look for handicap bathroom stalls. When doing yoga on the floor, I stiffen but still find it helps overall. Flexing the joints definitely helps and increases the circulation in the joints. Yoga lets you do that gradually without causing damage.

Jujube - I'm glad you haven't had major issues. That is what I am hoping to get to.

Jane - So sorry to hear about your seroma. I have one that is shrinking overtime but doesn't give me any problems.

Pheasantduster

JaneOPoppy- started anastrozole spring of 2013, had allergic reaction (itchy eyes and face) along with pulmonary problems(result of radiation damage). Held off meds till pulmonary disease cleared up. This took approx a year and on and off predisone! Started letrozole spring of 2014 - didn't have problems till this past winter - terrible stiffness, aches pains in legs especially at night. Stopped letrozole for a month in June/July then started exemestane July 13, and here it is end of July and my aches and pains are worse. During my 30 day break of meds, I was so much better, better sleep resulting in a better day.
And yes, I am ready to scream.

Pswanson82

Pheasantduster,

I was happy to see your post as I too am having itchy face, especially my lips are swollen and chapped, and my scalp itches. All I have told think that I am crazy and have never heard of this reaction....even on other site post here. I thought I was imagining it! I am of Anaastrozole for 2 weeks to see if it is the culprit.

P.

JaneQPoppy

Good grief! You gals have been through the wringer. I'm so sorry. Ick.

JaneQPoppy

Some of y'all might find this interesting. The New York Times asked people for their experiences with breast cancer.

http://well.blogs.nytimes.com/projects/breast-cancer-stories?ref=well-ccol

lyzzysmom

hi Ladies, I was dreading starting anastrozole after my experience with tamoxifen and effexor. I am happy to say so far so good after 2 1/2 weeks - nothing. I get a little weak and fuzzy headed but that started with effexor and has taken ages to improve. Non of the inability to go back to sleep or the upset stomach that lasted a month that I had with tamoxifen so keeping fingers crossed. Hope the other starters are doing well..

still waiting for results from my baseline bone density test last Monday.

JaneQPoppy

Welcome lyzzysmom! It's so hard to pinpoint where the SEs are coming from. Last week I got really sick to my stomach, but possibly it wasn't the meds but undercooked chicken. Blech.

JaneQPoppy

Okay, ladies, I'm coming out of the closet... no, not that closet. It's just that I couldn't stand to stay in the closet anymore because of, well... flatulence. Gas, that is. I did a little googling and apparently gas can be a side effect of Arimidex. Oh joy. One more lovely side effect. And a fun one at that.

At first I thought it was the beans...because I didn't soak them overnight first. Then the cole slaw (raw cabbage, dontcha know). The dried cherries??? What the heck? <sigh>

Anyone else care to come out of the closet...it's not so pleasant in there...

gypsyjo

Jane, i've been having the problem too but was thinking it was from changes in my diet! Organic and more fruits and veggies. I will add to my SE list and monitor. 

614

I have been taking Arimidex/Anastrazole since October 2014.  I take it in the morning when I wake up.  I feel fine. No side effects.

Good luck. 

BocaCiegaBabe

I'm one month away from being finished with Arimidex, take it first thing in the morning and with no food, only because I'm taking thyroxine too and that needs to be on an empty stomach.

Reading about all the se's worried me too prior to starting it, but aside for an occasional hot flash the first month, and the old dryness issue, I've done great on it, with no other side effects.

With me anyway, if I look for trouble I'm quite likely to find it. That is not to say anyone else' se's effects aren't absolutely real, they are. They are documented, but I didn't have them. I think it may seem as if so many of us have them, because those that don't, aren't as likely to come to a thread like this. I would not be in the hormone therapy forum at all if I weren't grappling with whether or not I should go on with Arimidex past 5 years!

Maybe some of us are having to take our first maintenance prescription ever, so that entire issue is new, but I'm an old hand, unfortunately, taking thyroxine and blood pressure meds for the past 20-25 years, so don't think much about adding yet another. . I remember researching thyroxine, my first drug, to death when I first started.

The way I looked at Arimidex with my estrogen positive tumor (60 something % positive as I recall), was that if I could take something shown to lessen chances of a recurrence, I was going to do it...anything to keep from going through that trauma and drama again!!!! Who knows if that attitude had any effect on the degree of any se's. I just knew I was going to do it.

I have always been a workout fanatic, and as others have noted, I think that helps. Still walking 5 miles a day and in the gym for Body Pump. Good luck to anyone starting the drug. Arimidex is one bit of armor we have that gives a chance to lessen a return of the beast, so initially try to look at it as a good thing we are doing for ourselves, not something to be dreaded.

Dromedary

Hi - I've done just over 2 weeks on Arimidex and so far, I'm happy to report no change or obvious SEs. I have joint/bone pain most of the time in my lower legs and ankles, but that started with the Taxol (last 4 sessions of chemo) and has never really gone away. So I really can't put it down to the Arimidex.

I try to take some exercise every day - at least walk a couple of miles and am restarting Pilates. I put on about 12lbs during chemo so I guess that doesn't help the joints much and I am working on getting it off again.

tbayer

I'm reading the thread because new to Arimidex, started 3 days ago.

Nothing significant in terms of symtoms yet, perhaps hot flashes a tad bit more, feeling blah/moody but have been slowly experiencing these since my oophorectomy 7 wks ago.

I agree with some of the posts that journeying through BC and all the treatments, it's hard sometimes to tease out what causes what. After chemo and radiation, I was feeling my mood drop some I think because I'd come off the "conveyor belt" so to speak, more time to think, less appoinments. Then I had my ovaries out, feeling good for 1st month and past couple wks, angsty/irritable/blah. Last week at my GYN/post op check up she said symptoms are all par for the course, having had ovaries removed. She recommended Effexor for hot flashes and mood. I'm already on low dose of lexapro, not sure if they can be combined. I told her I'd wait a bit since was going to start Arimidex.

The thought of going from 1 to 3 Rx drugs is yucky to me. So I guess I'll try the AI, see how goes it for couple weeks and if mood doesn't improve, will ask about Effexor.

It's so hard for me to be patient with myself sometimes. The mood, emotional part is challenging, esp. when feeling negative/irritable. I walk everyday, am getting back into meditation, want to get back into yoga. I think I'll journal today, that always helps. It feels like a long road. This is my 2nd time around with BC, more treatments this time. I can only take it one day at a time. I try to remenber that I'm powerless over what feelings come up, but I do have control over what I do with them:)

NCDi

Hello JaneQPoppy:

Yes, still reading, but not so frequently.
It is interesting reading responses regarding Arimidex and like many, I was almost adamant I wouldn't take it BUT, I thought I at last would try it and started taking it almost a month ago. My MO said I shouldn't have any problems (I am 64) and I figured it's just a milligram pill so jumped right in.

My MO suggested I increase my water intake, so I have done that and, he also said taking it before bed was best, so I do that too. I eat a yoghurt for supper a couple of hours before I take the med and I drink half a glass of water or more, with the pill. Sure, I get up a few hours later to keep my bladder happy but am able to go right back to sleep.

I did read somewhere on this thread that compounding agents can sometimes cause problems and that Teva seemed to be the least problematic - I was happy to see my scrip filled with Teva so that was a relief too.

You started your regimen a week before me - how are you doing?

JaneQPoppy

As y'all are saying, it's hard to know exactly what is causing what. Last week I was in the black depths of depression--this week not so bad. Actually I'm counting my blessings after hearing of what some close friends are dealing with in terms of illness (cancer and other things).

I'm having almost constant, very mild hot flashes, but maybe that has to do with the temperature being over 100. It will be interesting to see what it feels like in the winter time.

---

Tbayer said: This is my 2nd time around with BC, more treatments this time. I can only take it one day at a time.

---

Oh my, that is so scary and the last thing any of us wants... but it does happen. I'm so sorry. And you're right: admitting your powerlessness (in the Big Picture) and taking it one day at a time are important. Hugs to you.

JaneQPoppy

About a week ago, my right knee started hurting...actually it was in the middle of the night and the pain woke me up. I generally walk for an hour every morning, and I didn't stop...and as the day wears on, the pain does diminish somewhat. The pain never goes away. I've been taking IB, icing it, but I suspect it's here to stay and I just need to get used to it until it goes away. Or doesn't.

Last night, my back was bothering me. Not excruciating pain or anything, but just an all over ache that would not go away. I couldn't get comfortable for love or money. Finally fell asleep about 5:00 am. Holy cow. Now I'm at work and the ache continues. Is this my life from now on? <sigh>

Pheasantduster

Gratitude- as I mentioned before with regard to aches(severe leg knee pain) my Primary Care Dr recommended that I try
Co-Q-10, a supplement over-the-counter. It seemed to help me a lot. Unfortunately, I suffered from gassy, watery diarrhea. I stopped the Co-Q-10 and the Exemestane for a couple of weeks till feeling better. Starting back on exemestane every 2nd day for a couple of weeks, then 1 every other day, and if things behave, I'll take one ever day. Please note: this is MY decision. Let's see how I manage.

sebm9

I've had no problems with Arimidex. Short history: I had lumpectomy, chemo, and rads with boost. I used Penguin Cold Caps during chemo so kept my hair throughout chemo, and I had very few SEs from chemo either -- even my bloodwork stayed normal throughout. Went on tamoxifen for 1+ years then went into a very sudden and fast (3 week) full menopause. I'd been having lots of SEs on tamox and was both grateful and wary of switching to Arimidex. After two weeks I developed excruciating bone pain, even the bottoms of my feet and my toes hurt. Then I remembered that during chemo, when I had my neulasta shots, the nurses told me to take Claritin the day before and for 3 days after, as it relieved bone pain. So, I hobbled to the medicine cabinet, popped a Claritin...and overnight the bone pain disappeared. I take Claritin every day and have not had an issue. My doctor now tells her patients to try this if they have issues. I posted this on the board, and other women immediately also noticed results. I found it depressing to read the boards, to be honest, so stopped. If I'd been having SEs then it would have been helpful. I take mine at bedtime.

I find it a little harder to keep weight off -- I'm very active -- and have given myself occasional 1-2 day breaks. I always notice a reduction in bloating and seem to lose a pound or two when I do this. I've put on about 5-7 pounds that just won't come off but nothing to worry about. I was worried about bone density, but began training in aikido (a Japanese martial art), in part because I'd always wanted to but also because I wanted to learn to fall safely without injuring myself and breaking any bones. My first dexa showed that I now have the bones of a 25-year old, my baseline was a healthy age appropriate. Next week I expect to get the all-clear from my doctor to stop, as I'll be at the 5-year mark. (Unless there's new info suggesting that continuing has benefits.) I have been a 1-mile/day swimmer for almost 30 years, and also hike, do strength training, and other activities.

If my doc suggests I continue, I am absolutely fine with that, as I consider myself free of SEs from arimidex.

I try to keep in mind that with any drug, there is always a menu of potential SEs and every woman will respond differently. I decided not to worry in advance about things that hadn't happened yet or might not ever happen. That thinking has served me well throughout all of my treatment steps. And I'm healthier and stronger than I have ever been in my life!

Susan

Dromedary

Sebm9, that is an encouraging and inspiring post. Thank you. So happy for you that it hasn't been so bad and/or you have found ways to deal with the low points.

I went through a very down period after about 4 weeks - lots of pain in the knees and ankles, putting on weight, coming to terms with 5 years more of this crap... Onc put me on Effexor and after a couple of weeks I began to feel better. My head is certainly in a better place - the body is variable! I try to walk for an hour and/or do Pilates 5 days a week. I'm certain the exercise helps, and clearly from an osteoporosis point of view, it WILL help. I'm pretty lazy so I have to force myself sometimes but Sebm9's post has given me a boost. I haven't tried Claritin but I think I will.

Otherwise, I just don't have the energy that I used to, but have gained quite a bit of weight - about 12lbs since January/surgery - so that could be a factor and I have to keep an eye on it. I don't want to "give in" to this - I don't want to be overweight, I don't want to feel older than my age, I don't want to be a gloomy pain in the ass and I have to believe that I have a choice, and not give in.