arimidex-side effects
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At the beginning of taking Arimidex 2.5 yrs ago I had slight cataracts. The growth has seemed to accelerate lately plus I am experiencing extremely dry eyes, visual distortion and blepharitis ( an infection of the eyelids) that can be caused by lack of estrogen. Anyone else out there with vision problems?
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I just started arimidex. I had six weeks of chemo and a lumpectomy and will begin 7 weeks of radiation next week. I started the arimidex last Wed. How long before the side effects kick in? Does regular exercise and an active lifestyle help?
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This is a follow-up to my April posting. I complained to a physical therapist about my continuing problems with my right knee. She then questioned me about driving: Did I widen my legs so that the foot on the gas was aligned to my leg or was my foot turned to get purchase on the gas pedal? She urged me to try to ensure my foot was in line with my leg when driving because twisting the foot to manipulate the gas pedal put extra strain on the knee. I've been very conscious of my leg alignment since and it has minimized knee pain as a result. So, does your mother drive and if so, is her foot placement on the gas pedal aligned to her leg?
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I had a 3 month "vacation" off Arimidex - it took only a week for my old energy level to return; it took almost 2 months for the joint and bone pain to totally subside. September was wonderful - I had energy, and no pain - no sleep problems - I felt like my old self! Unfortunately I had to go back on Arimidex starting October 1st (my onc really wants me to complete the full five years)..........the first week I felt OK ...................but last week.........WHAM............all the SEs came back! The joint/bone pain..........getting in and out of a car is difficult..........my toes get numb.........I have insomnia several nights a week.............no libido at all.............foggy brain............slightly depressed............and yes I exercise; still swimming as often as I can..........but it's hard to climb the ladder to get out of the pool. So I'm going to finish up this last bottle of Arimidex and call it quits............my onc won't like it but as I've already told him, my tumor was a Stage 1 and Grade 1 - I had chemo with a year of Herceptin and a mastectomy - plus two and a half years of Arimidex. I'm trying to lose weight (Arimidex doesn't help at ALL in weight loss; I'm lucky I haven't gained more).......and I think with a healthier lifestyle I can feel pretty safe from a recurrence.
I'll report back what my onc says after I tell him my plans..............he's a wonderful doctor...........but Arimidex is destroying the quality of my life.
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Hello all. I've been checking this forum out for some time but just signed up.
I've been on Arimidex for almost 5 months and am quite fed up with it. I "discovered" my lump in January, had lumpectomy in April. I refused any node surgery so my node status is officially X, however 6 months later there is still no palpable evidence of nodal involvement. I'm not sure how significant that is but I feel somewhat vindicated - I consider myself "negative". If it comes back in the same area, those little filters are still there to catch those bad cells. They are part of the immune system and thus part of the natural cancer fighting arsenal. I have difficulty with removing parts because they might be involved and just to see if they are - they can't put'em back if they are clean. There was "no lymphovascular invasion", "no multi-focal whatever" noted in the biopsy. Margins were good - the nearest 5mm. I passed on radiation because I didn't think there was anything left to kill in the breast and I still don't. My oncologist has told me that there is a 60 to 75% chance that I was cured by the surgery, perhaps closer to the 60 due to the high grade. All scans and blood tests have so far failed to detect anything suspicious.
So, I am experiencing many of the common side effects, but I admit none are really seriously impacting my life as yet (except the really personal, intimate issues). I had osteoarthritis going in and I'm really sure this is aggravating it and I'm concerned about long term damage. Over the past month or two I have experienced nasal congestion/drip, a feeling of mild upper chest congestion and frequent need for throat-clearing, and a cough. I believe that this too is the pill. Also there is the dry eye which I thought might be the blood pressure meds, but not sure. Arimidex promotes hypertension too.
I last saw my oncologist in late September and expressed my dissatisfaction with the pill but said I'd stick it out until I see him again mid-December. The chest business bothers me - my mother died of pulmonary fibrosis brought on by poorly monitored prescription medication. My mother and sister both had/have hip/knee replacements due to the arthritis - so far I am all natural, and I'm desperate to keep it that way if I can. In December, if I make it that long, I intend to discuss a reduced dose of some sort or getting off entirely.
I am somewhat overweight and have been working on that since before all this business started losing 5 to 10 pounds every month - until I started this stuff. Now I'm stalled and frustrated, and 5 pounds heavier than when I started it. Overweight is a risk factor. I've improved my diet - less meat (love a nice steak but it's a lot smaller now) and more fruits and veggies (I've always loved most of these). I take vitamins - C, E, and lots of D, glucosamine for the arthritis(several years now), and Aspirin. I've joined a health club and get there two to four times a week for an hour. That's helped the strength and flexibility but not the weight, but then they say muscle weighs more than fat . . .
So, guys, do you think I am doing enough to be able to chuck this crap! (I don't seriously expect a valid medical opinion, nor would I have blind faith in your opinions, but I'd like to know.) The fact is that most of my issues are because this stuff is doing exactly what it's supposed to do. The problem I see is that there are a lot of things going on in the body that need the estrogen and that's why we evolved with a backup system when the primary source ceases to function.
Oh, by the way, I was just shy of my 61st birthday when I was diagnosed, and 3 months shy of my planned retirement - what a way to start!
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Well, I skipped 5 days. Chest congestion significantly improved within 13 hours of first missed dose. The cough and throat "frog" persisted but was all but gone by the 5th day. In fact just about everything improved. No change noted in weight and hair, but in five days that's not surprizing. I was sleeping better too. Back on now for two days.
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Swimangle, I could have written the same post as you. Same age, same problems. I am a PE teacher and have gotten to the point I can hardly make it through my classes. I just joined and it makes me feel a lot better to at least know that I am not the only 53 year old that feels like 90. The only help I could add is that my GP told me to take folic acid too for the side effect. Just started taking the suppliment. We shall see.
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Swimangel, I quit Arimidex after 3 years and my ONC said, "Couldn't take any more?" She said she understood and that I had taken it during the most critical time anyway. I was 58 when I started and thought my depression was from my father's passing. I was a total grouch to my family, hurt all over, gained 15 pounds, couldn't think straight, no sex drive, and finally read real peoples' symtoms online. Have always been very physically active. I had no idea all this was caused by Arimidex. Have never regretted getting off of it. That was 3 years ago. I'll take my chances and enjoy my new life. Thanks for sharing.
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Whew! It's good to see I'm not alone out there. Makes all the aches and pains bearable. I'm 52 and have been on it for 18 months. I have the headaches, the INSOMNIA, and joint pain. I've started going to the gym and believe it or not, it helps. I still hurt when I get up from sitting too long - walk like an 80 year old for a few minutes, etc. etc. Every symptom all of you have. I've even developed a 'trigger finger' where my middle finger of right hand locks flat against my palm and I have to snap it back up. I wake up in the middle of the night with it locked in place and hurting like crazy. That's just insane! Waiting on an appointment with orthopedist to see if a shot will help.
Had torn knee cartilage surgery before Arimidex so don't know if knee pain is due to that or medication. Began to develop the foot pain, plantar fascitis, but started wearing Clark shoes ONLY and it has virtually disappeared. (We must be kind to our feet, for they support the rest of us!) Had a bone scan last year and doc told me i have good, strong bones, but vitamin D level is low. Taking supplements because I am NOT a sun goddess. There is so much cancer in my family that I figure skin cancer is the ONE kind I can easily prevent by staying out of the sun. Spend a lot of time in front of computers...work and writing when I get home...so I also have developed chronic dry eyes. Never thought it could be related to arimidex. NO sex drive whatsoever, but my hubby's on blood pressure medication so we're on an even keel in that department. Gives me more time to write. (grin) Just wish I could stay up longer to write without getting so sleepy. I have no choice but to go to bed, then wake up and stare at the ceiling at least five times during the night. Makes it extremely difficult to get up at 5:45 a.m. for work. Have come in late more in the last year and a half than I have in prior 15 years at my job.
It sucks! Especially when no one else understands how difficult it is to drag my ass out of bed in the mornings. Makes it hard to concentrate the rest of the day and, as a computer drafter for the highway department, my job can be very technically challenging.A friend of mind had the same kind of cancer, ductal carcinoma in situ, and had a lumpectomy and radiation afterwards, just like I did. She was on tamoxifin and said that she felt like an old woman for five years but that all her symptoms disappeared once she got off of it. I'm going to stick it out til I hit the two year mark and then revisit the situation.
God bless us everyone!
Save the Ta Ta's!!!!
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Well, I've been back on the stuff for about 27 days after my self-determined 5 day break. All my earlier complaints have returned, including the chest congestion but it's still a very mild feeling.
I saw my oncologist about a week ago and everything still looks good. I told him I was quitting at the end of December when my current refill is used (two weeks to go!). That would give me 6 months worth of pills. He didn't try to talk me out of it, just said that many women quit then decide that Arimidex was not the cause for the symptoms and go back on it. (I wonder if that's just because it takes so long for the symptoms to disappear - I wonder if they ever do completely.) My next appointment is mid March although he issued an invitation to see him sooner if I wanted. Anyway, I still have one more months worth of refills if I chicken out.
Apart from the side effects, I actually feel pretty good - I probably haven't been in this good shape - strength and flexibility wise - for years. I had been complaining for some time that my finger nails were soft and tore easily, but not anymore. That I believe is the vitamin D so although I was never tested I strongly suspect I was low. Unfortunately it doesn't seem to be helping with the hair, but then maybe I'd have been bald by now, so maybe it is. To combat the insomnia I finally broke down and took a sleep aid. I'll only use it a couple of times a week when I get desperate. It's not a perfect solution but it helps.
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I had problems with my driving too, so I bought a car with no center console on the floor in the front seat. I guess you could say we did not have bucket seats so I could bend my leg to the right while driving. But I did one year on tamoxifen and four on arimidex and that was that
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Bonnie,
I took Arimidex for almost 3 months. Was having excruciating toe and leg cramps at night. Thought it was just potassium or dehydration. Quit taking Arimidex due to other SE's. Am now
on Aromasin; my leg cramps have disappeared! So now...........I am thinking the Arimidex may have been the culprit! Thanks for your post!
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I'm new to all this. I've been on arimidex for about two months and am fatigued, with knee pain and nightime tingling just below my knees on both legs. Insomnia is rearing it's ugly head as well. My immune system seems so compromised and I've had so many stupid side issues since radiation in Nov.-Dec. 2010 that I can't tell what are arimidex side effects and what is something else. Anyway, my understanding of the purpose of the drug was to remove estrogen from the system during the five years that this cancer was likely to grow and show up again if we didn't get it all with surgery and radiation. As I understand it your estrogen levels go right back to post menopausal levels after you stop taking arimidex. So why are some people speaking about monitoring estrogen levels to determine after five years wether to stay on the drug. And why do some people seem to be staying on for longer than the five years. Just a bit confused and hoped someone might have some thoughts. Thanks in advance.
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Hi there AnneP,
I think some of these questions about the estrogen you need to ask your doctor to clarify. My thoughts - yes estrogen will return to your normal level but over time your normal level might drop somewhat - normal result of aging. I suspect that for most people this means that estrogen will go up again after you quit. Ask your doctor to explain. I'm not sure what will be gained by monitoring the level after.
As far as taking it longer than five years, well that's an individual decision people have to make. It would, I think be a matter of weighing your own personal risk of recurrence and your risk tolerance against the side effects you are experiencing - something else to discuss with your doctor.
With respect to the side effects you seem to be having - knee pain, tingling, and insomnia - I believe all have been reported in this thread. For myself, insomnia definitely. I had some knee and hip issues from osteoarthritis but I really think they are aggravated by the Arimidex. Personally, I did fairly well for the first three months, after four I told my doc that I was not very happy with this pill, after five I told him I was quitting. I quit at six months (62 days today since my last pill), and feel so much better - just about normal now. I fear some of the joint damage is permanent although I have improved in that area as well. Mood was a big issue - stabbed a box of tea ‘cause I couldn't get the knife under the cellophane wrapper - short temper, lack of motivation, depression, and I just generally did not feel like "me". I stress that you need to talk to your doctor. I personally probably have a high risk tolerance and a very low tolerance for the side effects - quitting was right for me, although I may have some regrets later if it does come back.
The first few months are difficult. You do adjust though. There is so much information coming at you and you have to make some very critical decisions. I found keeping a diary and a log of symptoms helped - the first few weeks consist mostly of "feel ok". Talking helps too. Take care of yourself.
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DEAR FRIENDS<
I was diagnosed with stage 2 breast cancer in 2004. I refused chemo & radiation after watching the death of two friends that took it. In 2006 I had overcome cancer with an official diagnosis using only the Budwig Diet. As we all forget and go back to our very hecktic lives I got off the diet and all the wonderful home cooking and relaxed lifestyle and the process started all over again. In 2008 a thermography revealed 2 months to live. I found a Dr. that did laser treatments and because mine was so advanced it took 22 treatments. It usually only takes 3 or 4 in early stages. In 2009 I found myself in the hospital with fluid around my lungs. They thought it was because of cancer but turned out not to be as well as my lungs were showing previous scar tissue from pneumonia. At that time I agreed to be put on arimidex in order to stay in the loop for cat scans, & chest x-rays if needed. I am typically not an overweight person. I didn't notice too much in the beginning but 1 yr. & 9 months later it is taking a toll on my body...hot flashes, severe headaches, osteoporosis, heart palpatations, high cholesterol, insomonia, joint pain, numbness in my arm, restless leg syndrome, weight gain and extremely high blood pressure. This all seemed to escalate over night. Actually it has been agressively happening over the past month. I am calling my onc. tomorrow to see if I have to gradually get off or if I can just quit tomorrow. At the rate my body feels I want to just GET OFF IT. Has anyone out there come off cold turkey? Or have you had to decrease dosage to get that done?
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Yep Lightangel, I quit cold-turkey - twice actually.
First time for five days as a test, second time, last pill January 1st - about 72 days pill free now. I just had my 3-month checkup and all still looks good. Mammo was clear in January too. I was on it about six months and I too passed on the chemo and radiation. I'm counting on the exercise, diet, vitamins, and aspirin to keep me clear. I just passed the first year.
As far as I understand, tapering is not required, but do talk to your doc about this. Everyone's situation is different. Make sure the decision is right for you.
Take care and good luck!
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Hey GAnne49,
Thank you soooo much for the feed back. I simply can't wait to talk to my Doc. tomorrow and stop all this painful stuff. After all the trama and drama of things, I never had true PAIN until now. I too will be dependent on right foods, exercise, vitamins etc. Great luck to you also. Lightangel
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I'm so glad to have found this info. Arimidex has just made my everyday life a real drag. I have arm pain, my hands hurt, my feet hurt and I can't open a bottle of water. I have not slept since taking this drug , I thought it was me but I see its the Arimidex. Tomorrow I go to the Oncol and I will tell him"" not ask him ""that I will not be taking this anymore. I did everything to keep this cancer in check, the chemo the surgery and Herceptin every 3 weeks.This drug has really changed my life it caused so much pain and muscle weakness . It has slowed me down to a crawl but now I know why I feel like I do. Thanks to all Arimidex takers for taking the time to write about your reactions to this drug it needs to get out there to everyone so they can talk w/their Oncol. Henrietta6
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I have been on Arimidex for 9 months and just noe figured out the hip and back pain are side effects of the drug. I am 70 and previously fit and energetic andnow feel like 90. It hurts to move after sitting and to climb stairs. Dexascan was normal bone density, but tast week MRI revealed a fractured rib. Tell me that's not a SE. I have numbness in left arm and now that I see it all as SEs, am ready to quit. I want my body and energy back to normal. I retired from a wonderful job due to these aches and pains. Information on your posts has been most enlightening and helpful - thank you for sharing, because the onc's do not.
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Hi everyone! I am fairly new to the site, am stage 4 with bone mets. My onc took me off of chemo and put me on arimidex in prep for surgery later this month. Three days ago, I started having horrible pain from basically my thighs to my chin....everything hurts and am running a fever. My once feels it is from the arimidex. Has anyone else experienced fever?
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Hi Mandy5,
Gosh I hope all works out well with the surgery. I never experienced any noticable fever myself although if you Google "Arimidex fever" you do get some hits along with "flu-like" symptoms, so yeah, possibly the Arimidex. (Be careful and make sure your virus check and all that is updated and working first. I clicked on one I shouldn't have.) Aches and pains are common. Good luck.
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After reading all of your posts on Arimadex, I decided I wasn't crazy. I have been on the Arimadex 4, almost 5, months with almost every SE listed. Went to the female onoc dr today instead of my regular/original dr in the practice. Not only did she put me on Femara, but explained that the armoatase inhibitors are actually MORE important than the chemo.
She also gave me the simple, straightforward view/explanation of my Onoctype DX scores and my most recent CA 27.29 score. I have a much better understanding and feel like I might actually survive all of this after all when before I felt like I was swinging in the wind. DH was with me (he has seen her before also) and thinks I should make may future appts. with her.
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I am new to this board. I found it when I was looking for info on Arimidex side effects. I had a mastectomy on February 28, 2011. Fortunately, I did not need chemo or radiation and was given Arimidex as a med. I have been taking it since April 29th, just a month. About two weeks ago, I started to experience aches and pains and thought it might still be from the surgery but it moved to other parts of my body. I have AFib and recently my heart has been racing. I am also hyperthyroid and have Barrett's esophagus. I also have been so fatigued, I can't stand myself, and now, for whatever reason, Warfarin is not doing its job. In addition to all that, I have been having really strange, disturbing dreams. Reading this board, as well as other sites for Arimidex, could it be possible that all these symptoms/occurrences are caused by Arimidex? I am very tempted to stop taking it without discussing it with my oncologist - but would discuss it with PCP.
Please tell me I'm not crazy or influenced by what I have read. Believe me, it's really real.
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Emell - It's really doubtful that you are crazy!
Do talk to your doctors about this - onc and cardio.
Aches and pains are common. Sleep disturbance, insomnia, are also common. I can't say for sure about the dreams specifically but could be. This pill disrupts the normal hormonal balance and can have all sorts of effects - most non-lifethreatening.
I kept a log/diary to document how I felt from day-1 noting the various aches and pains, flashes, headaches, dizzy spells, dry eyes, bad nights - easy to do on a computer. It's been quite useful. Talk to your doctors and perhaps suggest taking an Arimidex break to see what changes you see.
Good luck and take care.
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Thanks, GAnne. I've only had one visit with the oncologist and I don't think that she and I will get along too well. Since I have Barrett's, I cannot take any drug to prevent osteoporosis and I have gotten into two squabbles with the onc (during the initial visit and by phone) about it. She asked me, what does the gastro know? Oh, boy.
I think she's good at what she does but leaves a lot to be desired in having her decisions challenged. The problem with the AFib came up after I had just seen my cardio and, if it persists, I will see him again. So far, I have had to have three weekly PT tests in a row, which is unusual as it is normally once a month. I have to go again this coming Friday for another PT and I think I will ask then if the Arimidex is somehow involved and, if so, what to do about it.I next see the onc in July, so I will take your suggestion and start a log/diary to document what is happening to me.
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Hi Emell,
Yes, do start a log. It proved most useful in making my decision to quit this med. I mentioned earlier about the lung issues I experienced and how they disappeared and reappeared by going off and on and off again. My onc never even questioned my decision. My only regret is that I didn't have a similar record from pre-diagnosis times, but who expects to need it.
When I started this stuff I was quite amazed at the wide range of body systems that were impacted. I hesitate to suggest to anyone to quit taking this pill without discussing it with their medical team and family because it is a balance of risk and tolerance - always make the decision based on your own situation.
Unfortunately sometimes the medical team is not particularly "team oriented" - good luck on that. I don't know too much about the Barrett's but I did look it up. Can you consume dietary sources of calcium - dairy in particular and they say broccoli and its relatives are good sources. I was most concerned with the cardio issues you mentioned as these could be serious. On the other hand, if you are not sleeping that in its self can cause all kinds of things to go wrong.
Good luck with the fight, and take care.
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Yes, GAnne, I do have dairy on a regular basis. Love milk.
I think once I learn all the SE I'm experiencing, it will be helpful to my health care providers to make a determination as to whether or not Arimidex is for me with my myriad medical conditions. Or it could be that my body will become adjusted to it, as it has so many other meds. And I think a log would be a great help as I can see my day-to-day progress or lack thereof.Although my family does not have the BRAC gene, my mother, older sister and my younger sister all have/had breast cancer. Now it's my turn. My mother had a mastectomy and her chances of survival were practically nil but she survived and died of another cause at the age of 95. My older sisted opted for a mastectomy rather than a lumpectomy as she didn't want chemo or radiation. My younger sister had a lumpectomy last September/October, after having two surgeries for gall bladder cancer. She underwent radiation for both cancers. She had been on Arimidex since January of this year and has been experiencing severe joint and muscle pain. the onc (same one that I am seeing) is taking her off it. My sister doesn't know as yet what the new med will be.
I also think that I have learned to live with the side effects of the various meds that I take. Possibly Arimidex will be another. I will discuss this further with my onc when I see her in July, if I am still having serious SE, or sooner if it gets worse.
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It's a long time since you posted this but if you still have trouble I had the most appalling cramps at the top of my legs which made me scream. I used new era magnesium phosphate which desolves on your tongue. Sometimes I took half a pot which didn't hurt me but stopped the unbearable pain immediately.Something not mentioned was that I had appalling diarrhoea which was so embarassing but went away when I stopped the Arimidex. If you have the 'runs' you loose mag phos. Been off arimidex for 5 years but still have bad joints which Rose Hip helps with. I am well. Hope you r too. love margiex
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Hi all,
Just thought I'd pop in for a bit. When I come and check this forum I often wonder how everyone is doing - all the ladies who have posted who we have not heard back from for some time.
Margie11 - been off for five years and still have joint pain! Tell me, did you have any arthritis/joint problems before starting this stuff? One of my biggest fears has always been that this stuff causes permanent damage to joints, essentially accelerating normal deterioration.
I took it for 6 months and quit. I decided it wasn't worth it to prevent something that might not happen, and might happen anyway even if I took it. If it comes back, I'll think about using it again but I'm not sure.
I've been off it for 6 months, almost 7 and as of May 31st, still lookin' good, feelin' fine. The next checkup is mid August, so we'll see how that goes.
I am happy to report that most of my side effects have disappeared or at least almost so. I now note in my log "NN" (New Normal or Near Normal) as a good thing. I still have some clicking in the fingers of my left hand (right is good) but it's no longer an all-the-time thing. There are still some issues with the middle right finger but most of that predates the meds. Up until a few weeks ago I still had I had more hip/knee issues than I consider normal. The improvement seemed to come quite suddenly, so as of now, I'd say this is pretty near to the pre-med normal, but it took 6months. The one really lingering issue is the lower back pain. It's fine most of time although it bothers me at night to varying degrees and I find physical work - grass cutting, snowblowering - will cause a flairup, which is not normal pre-med.
Take care all.
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Hi Ganne
No I still have some stiffness and my feet and ankles are pretty bad, I wear fit flop sandals and boots which really help. Eventhough I suffered badly on Arimidex, I am thankful I battled through, my youngest daughter was only 12 when I was diagnosed and I felt I had to do everything I could. I don't mind the effects of the drug, just accept it, my quality of life is good, I am 61 but don't feel it and I hope and pray that is the end of my bc. I have my last 2 year mammogram in Jan, it will be 10 years since diagnosis, hopefully I will have a long and happy old age. Here's hoping the same for you, it is true nobody knows what is the right thing to do, we just have to make our own choices. margie11
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