Topic: Arimidex

Hi everyone,

I've been on Arimidex for almost a month now and the most annoying SE so far is hot flashes.  There is also some joint pain, but I had that before so don't know if it is from the Arimidex.  The onc told me that I could take either Arimidex or Femara -- they work the same way and he said they were basically equal.  He also said he would change me to Tamoxifen if the Arimidex caused too many problems, so that makes me think the Femara must have about the same SE's as Arimidex.

~Bonnie

 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.

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

~Bonnie

If you ladies will go on the Mayo Clinic site. Type in Arimidex - then click on side effects - you will find the most up to date list of se's that I have found so far.

Tingling hands and stomach problems are listed......... and yes, sometimes they go away and sometimes they come and go.

SE's are easier to treat than Cancer....... Hang in there!

JO

 Otter ----- you are right! When I asked my dr. the results of longer term Arimidex --- his answer was, "Honestly, we don't know -- when Tamox first came out we thought it could be taken forever -- but found out that was not the case."

I will finish 5 yrs. the end of May, will have a bone density in July and will try to decide whether to continue after the results of that test. Last bone density was good. I've read about women on it for 8 yrs or more -- but don't know their dx.

My dx. is below in my sig. Dr. says women that had a worse dx. or large tumor - he is insisting they take it for life or until research shows different.

He won't help me make my decision except to say --- take it 6 months longer - then reevaluate - you can stop any time!  (SO THAT DOESN'T HELP ME MAKE MY DECISION)  does it?

Keep in mind that some of the se's listed are only a very small percentage and some could be from other causes.

I really don't know what I will blame all my aches and pains on after Arimidex ---- if I go off it.

JO

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 

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!

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

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. 

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.    I'll go back and look up that part.

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

Susan

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.

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:  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

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.

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.