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Arimidex

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Comments

  • lalani
    lalani Member Posts: 3
    edited April 2009

     i  too have had tingling, burning pain in my hands and wrists. this started shortly before i went on arimidex though. i have asked and searched for anything about this phenomemon but not had much luck.

     i don't wish this on anyone but, am glad to find that i am not alone in this. it seems that when i describe symptoms to my doctors they all look at me as if i am the only one in the world who is going through this stuff. 

    i first felt the burning and tingling at night and that  was about halfway through radiation tx.

    i recently went off armidex and will see what happens in how i feel over the next couple of weeks.

    i haven't been myself emotionally either. i feel so tired of all of this stuff honestly. i just want to live my life again but, i keep having to get through one more stage of breast cancer recovery. i don't want to do this anymore truthfully.

  • hostanut
    hostanut Member Posts: 5
    edited April 2009

       I've been on Arimidex for almost 3 yrs. now and have always taken it in the AM with my other pills.  I've never had an issue with sleeping at night.  At first I had a few hot flashes at night, but none of thosewere the  wringing wet variety that some women have.  Especially in the cold weather my joints may feel more stiff and sore, but nothing that would stop me from taking it.  If it does what it's supposed to do (block the estrogen receptor and save my life), I find the other inconveniences minor.  Good luck to you!   Nancy

  • BonnieK
    BonnieK Member Posts: 271
    edited April 2009

    Has anyone had stomach problems from the Arimidex?  If so, did they go away?  I just started taking it on March 19th.

    ~Bonnie

  • Unknown
    Unknown
    edited April 2009

    Hi Bonnie...I have been on Arimidex for 3 weeks and found that around day 2 till about day 6 I had a low level nauseous feeling.  Not super bad, just enough to make me feel "off" and as a result not very hungry.  It totally disappeared after the four days.  That has been the only problem I have experienced so far with Arimidex. 

  • otter
    otter Member Posts: 757
    edited April 2009

    Wow.  That list of Arimidex SE's looks like it includes everything anyone has ever experienced while they were on the drug.

    Does everyone here realize that women on aromatase inhibitors are at risk of developing carpal tunnel syndrome?  (That's not just on a list of possible SE's--it's documented in the medical literature.)  And, the main symptom of carpal tunnel syndrome is tingling or numbness in the fingers and thumb?  So, if you are having tingling in your hands or fingers, check with your onco or your PCP to see if it could be carpal tunnel syndrome.  In the meantime, try not to flex your wrist(s) so much, especially when you're sleeping.  Keeping your wrist(s) straight helps to relieve the compression on the nerves that run through the carpal tunnel.

    I've been on Arimidex non-stop for the past 9-1/2 months.  My most obvious SE's have been hot flashes and general achiness.  The hot flashes are not as frequent as they were at first; and the aches and pains are less apparent if I get some exercise every day and be sure to take my calcium and Vitamin D supplements.  (There are some reports out there in the medical journals saying that pain can be more of a problem in people who are Vitamin D-deficient.  One more reason to keep up on your Vitamin D!)

    Jo is right--IMHO, even though these SE's are a nuisance, they are way more tolerable than a BC recurrence.  I haven't talked to my onco about what we'll do after 5 years.  She said last spring that, in her opinion, Arimidex and Femara were interchangeable.  She preferred to start patients out on Arimidex because there was more known about it.  (It had been out for a longer time.) 

    I do have very early osteopenia, so my onco sent me to an osteoporosis specialist.  That doc said my fracture risk is low, so she doesn't want to start a bisphosphonate unless my bone density gets a lot worse.  She said that, from what she's heard, women at my cancer center who are coming up to their 5-year limit on Arimidex are being continued on the drug, even though no one really knows what will happen after 5 years.

    otter 

  • flannelette
    flannelette Member Posts: 398
    edited April 2009

    otter - thanks for what you said about carpal tunnel syndrome. My tingling/numbness/pain in my lower arms/hands is waking me up at 4am & I can't go back to sleep or lose the pain unless I get up, move around, & start the day. This morning i could not clench my right fist. I've been on arimidex about 3 months. Tonight I'm going to use my DH's hand thingies (kind of tight gloves his dr gave him to wear at night to keep your wrists straight) and luckily see my onc this week, to ask.

  • elisabeth
    elisabeth Member Posts: 28
    edited April 2009

    Hi All.  I just wanted to validate some of the hand problems people are having.  Some of the posts say that their doctors look at them as if they are crazy or the SEs are "in their head."  I had to go off of Arimidex because it destroyed my hands.  I have been off of it for about a month and 1/2 and I don't think my hands will ever be the same again.  They are not as bad as they were, but I think the destruction to parts of my hands has been done.  I am trying to believe that at some point they won't hurt as much.  We'll see.

    I have switched to Tamoxifen and am having a much better time with it.

    E 

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited April 2009

    E - I have to say that my fingers and hands probably hurt the most of all my body parts, even on Aromasin.  I went off Arimidex in Jan. (I think) because of the pain.  Now, I have trigger thumb, and fingers that sometimes hurt so much, I can't use them.  I know when I get up from the computer, they'll be very stiff, painful, and kind of asleep.

    Yes, I know, it's better than cancer.  I just don't look forward to having clubs for hands, if the SEs get worse.   Undecided

  • patoo
    patoo Member Posts: 5,243
    edited April 2009

    souad, please let us know if you get any relief from the "hand thingies".

    elisabeth - how long were you on Arimidex and at what point did you start to notice the pain in fingers and hands.  Anything with toes and/or feet?

    I guess since I turned 60 and spend most of my working day on the computer that I'm feeling the finger pain may be carpal tunnel from my job and there's some arthritis as well.  It's difficult to tell where the interference is coming from when different life events are going on.  Bummer!

  • elisabeth
    elisabeth Member Posts: 28
    edited April 2009

    Hi Susan and Patoo.  I was on Arimidex for about 4 and 1/2 months.  I cut it in 1/2 and took it every other day - my med onc knew about this.  Even with that little amount I was miserable.  I started noticing the pain in my hands pretty quickly and by the 4th month I couldn't bear the tingling, numbness, pain, etc.  The Arimidex definitely kicked my arthritis into high gear and this is why I am afraid that I have permanent damage to my knuckle joints.  I did not have this much pain before Arimidex.

    Susan - I sure hope you do better on Aromasin.  Have you talked about taking Tamoxifen?  I just got another book out of the library that someone on this board suggested.  It is called "After Breast Cancer," and she has an interesting discussion about Tamoxifen and the aromatase inhibitors.  

    I just took my Tamox (I am doing 1/2 every day now until I acclimate--and yes my doctors know).  I am very small and pretty lean so I don't have much body fat to help absorb some of these "poisons" - sorry, but that's what I feel.

    Take care to all.  E 

  • CaliforniaKate
    CaliforniaKate Member Posts: 4
    edited April 2009

    I've been on Arimidex for almost two months. I did 5 years on Tamoxifen, but found out 4 1/2 years into it that I wasn't metabolizing it right. In Feb. I found out I had just turned menapausal, so the onco put me on Arimidex. I've had a knee replacement a few years back, and have arthritis is my other knee, and also have had minor back aches for years. A few weeks into Arimidex I started waking up really stiff in the mornings. Knees really hurt, tail bone, and back if really stiff. After I'm up for about an hour, I feel so much better. It just seems to really intensifed all my old aches and pains. Should I be worried that this could be bone mets, or just normal side effects.  I've never had many hot flashes, just an occasional warm flush in the evenings.  Kate

  • flannelette
    flannelette Member Posts: 398
    edited April 2009

    The "hand thingies" worked! for the numbness/tingling/pain that wakes me up at 4am. Slept through the night, woke with hands feeling almost normal! For anyone interested, hand thingies are something you buy at the drugstore in the se of arimidex aisle - just kidding lol - they are black oblong rubbery stretchy flat things with a hole for your thumb. You stick your thumb through the hole then wrap the rest around your hand/wrist & just press to secure with velcro. Now your wrists stay straight, and, if you have only 1 boob like me, you get to look like an Amazonian weight-lifter. But I'm still asking my onc this week......thanks for the tip, otter.

  • patoo
    patoo Member Posts: 5,243
    edited April 2009

    LOL - souad - I was almost taken in by the drugstore, se... aisle.  You gave me a great laugh.  I think I will pick up something anyway for my wrists since I spend so much time on the computer. 

  • Katalin
    Katalin Member Posts: 31
    edited April 2009

    Very amusing Saoud!  I love that!  the se aisle of arimidex aisle!!!

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited April 2009

    E - I have that book!!  But, back when I was reading it, I knew nothing about AIs, so didn't pay much attention.  How things change.  Frown  I'll go back and look up that part.

    Hope things are going well for you on your new poison.

    Susan

  • elisabeth
    elisabeth Member Posts: 28
    edited April 2009

    Hi Susan.  Thanks for the kind words and, yes, I think this is a pretty good book even though it is a little older.  I wish there were more books that had discussions like this one.

    Hope you are well and (I know Im repeating myself) that Aromasin is kind to you.

    E 

  • swimangel72
    swimangel72 Member Posts: 142
    edited April 2009

    I've been on Arimidex for over 9 months and was doing well with it - until the last month. Strange that I'm hurting so much now and feeling so exhausted when I just finished the Herceptin three weeks ago. I also have a very slight cough and slight shortness of breath if I exert myself. I told my onc last week and he didn't take me very seriously. Today I saw my endocrinologist who took blood to check my thyroid levels - it's possible I need a stronger dose of synthroid - maybe that explains my fatigue. I get through work OK, then once I'm home I collapse in a chair. Saturday I pushed myself to swim at the pool - felt fine swimming 1/2 mile (although I had to stop frequently to catch-my-breath) but on Sunday I was wiped out! I was all dressed and ready for church and had to go back to bed - I was that tired. My bones hurt - but this fatigue is really a show-stopper for me. I'm a bit worried that the Herceptin did a number on my heart - I'll be seeing my onc tomorrow and will ask him if I get a final muga scan..........but I've also read that herceptin can cause lung problems too. I really hope my fatigue is not related to my heart or lungs - the endorcinologist listened to my heart and lungs today and said they sounded fine. So perhaps ulitmately it's really only the Arimidex............but if the fatigue doesn't go away soon, I'll be asking to get off this drug. There's no way I can continue living like this - I'm getting so sluggish and slow, the weight is creeping up and up - and I can't find the energy to do more exercise. I hope my onc will be able to give me some answers tomorrow - or at least get me a muga scan.

  • Alpal
    Alpal Member Posts: 112
    edited April 2009

    Started on Arimidex in January. Good news is that's it's working. TM are continuing to go down and PET looks even better than when I finished chemo. Very mild hot flashes. Did have fairly severe bone aches, but those seem to have gotten better. In the last few weeks I have developed edema in legs and feet. Onc put me on diuretic yesterday. I lost 6 pounds overnight!!! AstraZeneca lists edema as a side effect, but I've not seen anyone else mention it. Has anyone else had this? Just curious.

  • Annabella58
    Annabella58 Member Posts: 916
    edited April 2009

    Hey there, i've been on arimidex for about 4 months now, and with the heat, yeah, I just began to get some edema in my hands and my feet.  I'm glad to see someone else is posting with this issue, did not know it was a SE, but I was scared.  Is it dangerous?

    Thanks!

  • babyc
    babyc Member Posts: 20
    edited May 2009

    Hey! I've just started to try to learn about Arimidex.  Just finished last chemo treatment and know I need to wrap brain (what's left) around the next step.  I'll be meeting with Onc in three weeks, but want some knowledge of where she's wanting to take me.  As always, I get so much from coming to BC.org.  Thank you, all............

  • WellWater
    WellWater Member Posts: 4,524
    edited May 2009

    babyc:  Please don't get overly discouraged reading what our s/e's on any of these AI's have been.  Everyone is different - according to my oncologist only 1 in 4 women suffer bad enough s/e's that they have to switch AI's.  I personally know 2 women who have been taking Arimidex for more than a year and neither one have ANY s/e's.  You will rarely hear from women who don't have issues taking them.

    The knowledge you can get here may or may not be helpful.  You can start Arimidex  and if you happen to be one who has s/e's then you'll have questions for your oncologist.  It's nice to know that those of us who do have issues are not alone. 

    Good luck

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited May 2009

    Bad news - Arimidex pain was sneaky, and after 4 months, was an 8, on a 1-10 scale.

    Good news - Aromasin likes me much better!  More hotties, but half the pain!!

    So, as Well said, there are alternatives, if you can't do the Arimidex.  Thankfully, it is not all or nothing.

    Good luck with treatment,

    Susan

  • Cheyanne
    Cheyanne Member Posts: 33
    edited May 2009

    I had my mastectomy 2 weeks ago, will not be having radiation or chemo.  I have been referred to an oncologist who wants me to do Arimidex.  I see him again around 6/1.  I have some real concerns about this course of action, not the least being I don't like the idea of putting some foreign substance into my body for the next 5 years.  After reading the info booklet he gave me, and reading these message boards, here are some of my concerns:

    1. Hot flashes.  I had a hysterectomy at age 31 (I am 68 now), ovaries left.  Dr told me I might have menopausal symptoms some day.  Never did.  Never want to. 

    2. High blood pressure.  I'm already on medication for blood pressure, don't want to make it worse.

    3. Insomnia.  Have struggled with this issue basically all of my life.  I am not on any medication at the present time.  Want to keep it that way.  Don't need more of it.

    4. Weight gain.  I don't need to gain any more weight, I am moderately overweight now.  I feel like I am right on the brink of having heart disease now, with high blood pressure and anticholesterol drugs.  I don't want to make things worse.

    5. Bone and joint problems.  This is the most alarming to me.  I had a total hip replacement at age 58, ankle pinning at age 62.  Both were related to a birth defect, bilateral dislocated hips and also what I call "funny feet".  I'm not anxious to sign up for more orthopedic problems.   

    He mentioned doing a bone density study, and at the very least, I would definitely want to have this done before going on any drugs.  Has anybody else had this study done before making a decision?

    I am at low risk for recurrence.  I am 68 years old.  What are the risks vs. benefits of this treatment anyway?  I would appreciate any input.  Thanks.

  • REKoz
    REKoz Member Posts: 164
    edited May 2009

    Cheyanne- I don't know if this will help any but here goes. My Mom at age 77 had a bilateral. She had a hysterectomy years ago and never suffered hot flashes. As you can imagine, she does have age related joint issues, particularly bad legs. After surgery, they put her on Tamoxifan. She's been on it 3 years with little noticeable se's. At her last Onc. visit, she was asked if she wanted to go on Arimidex. She refused because she felt she was OK with what she was on.

    Maybe Tamoxifan might be an alternative for you? At least run it by the Onc. Seems the se's are not as severe as they are on AL's.

    Just a thought...

    Good luck to you!

  • Cheyanne
    Cheyanne Member Posts: 33
    edited May 2009

    Thanks for your response.  I saw my surgeon today for my postop check, and I talked about it a bit with him.  He suggested I go over my concerns with the oncologist next month.  I have decided I will ask for the bone density study and see how it looks before I make a final decision.  No, I don't want tamoxifen either.  It has its own side effects. 

  • vivre
    vivre Member Posts: 881
    edited May 2009

    Cheyanne-I had the same qualms about arimidex and after lots of research, I decided against it. There are lots of natural ways to lower your risk, without taking a drug and there is lots of research to back it up. Check out the other threads about iodine, I3C or DIM, diet and exercise, etc. I feel very confident that everything I am doing is more preventive than arimidex and the only side effect I have is that I feel happier and healthier now than I did before bc!

  • hostanut
    hostanut Member Posts: 5
    edited May 2009

    Roxy,

        I've always taken my Arimidex in the AM, and it's been fine.  I will have been on it 3 yrs. in Sept. and just recently my legs have been more achey........especially at night.  It's nothing I can't deal with, and sometimes I just take a pain pill.  During the day I'm busy enough so I really don't notice it.  We hear so many horror stories of people on Arimidex that I feel fortunate to have no severe side effects.  The other day I read an article that said the more hot flashes you seem to have at the outset of starting an AI, the chance of recurrence is about 30% less than for those who don't experience anything.  So.....I had some hot flashes but none that were the wringing wet kind.  Things have pretty much evened out now.  And I feel if I had no side effects, the AI wouldn't be doing its job.  Vaginal dryness is another whole story............

    Nancy

  • unique
    unique Member Posts: 209
    edited May 2009

    Hi galz ~

    I am trying to get up the courage to take my first pill of Arimidex.

    My onc gave me samples on Monday, here it is Wednesday and I haven't taken it yet.

    Yesterday I got up with a headache, nausea, and bathroom runs, I felt just awful and I couldn't bear to take anything then. I get this - stress, allergies, wrong foods, constipation, etc. from time to time and just address each possible cause until the headache goes away. Anyhow it did.

    Today I should have taken it but didn't. Tee hee.

    Any encouragement? I read all the studies and decided to do it. Am post menopause so an AI is the way to go. It may not be better than Tamox but they don't know why, so I am just going with the flow.

    Gonna take it in the AM after my exercises, when I don't feel so stiff and achy from my age related arthritis.

  • unique
    unique Member Posts: 209
    edited May 2009

    Patoo, I am reading about everyone's hand troubles. Just wanted to mention I thought I was getting carpal tunnel about 10-15 years ago and got myself a digital tablet. You use a pen with it and it is easier on the hands.

    Other thing - would speech recognition help also, do talking instead of typing?

  • unique
    unique Member Posts: 209
    edited May 2009

    P.S. - The cost of this stuff! For me, I have a $250 deductible and then pay 50% of the cost. The onc gave me 2 months worth of samples. I made a little spreadsheet and it looks like at $864 for a three month supply that comes to a total retail cost this year of $2,883! With insurance paying $1211 and my copay plus deductible $1,671.

    What are you gals paying?

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