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Topic: Arimidex Serious Side Effect (Osteoporosis)..

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Daly City, CA
Joined: Mar 2007
Posts: 154
  • Posted on: Nov 25, 2007 04:50 pm, edited Nov 25, 2007 04:50 PM by dalycity
dalycity wrote:

I have been on Arimidex since Feb. 2007 and have been reading various postings here regarding side effects.  I understand that the most serious side effect is osteopenia/osteoporosis; and yet from reading emails here, it appears to me that most people are concerned with side effects that are more 'visible' but perhaps not as threatening (as osteoporosis), like trigger fingers, hot flashes, dry skin, diarrhea, weight gain, etc.  I feel if I don't get osteoporosis from Arimidex, I would be happy to put up with all the other (perhaps less menacing side effect).  Any opinions on this?

dalycity
Dx 11/30/2006, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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Bliz
Joined: Jun 2007
Posts: 489
Nov 25, 2007 07:04 pm Bliz wrote:

I couldn't stand the other side effects long enough to worry about  osteoporosis. 

I took Arimidex for a week .  I even tried a 1/2 dose and a 1/4 dose.  I was beyond anxious with even the 1/4 dose.  I felt like I was jumping out of my skin and had about 50 gallons of coffee.  I couldnt sleep at all on the full dose and barely on the 1/2-1/4 dose. 

I will try Femera in a couple of weeks.

Nan72
OH
Joined: Apr 2006
Posts: 1543
Nov 25, 2007 07:10 pm, edited Nov 25, 2007 07:11 PM by Nan72 Nan72 wrote:

Hi Bliz

I hope you have better luck with Femara.  I have been on it for 2 yrs at first had some joint stiffness, and tired . that seems to have passed.

Started taking it with my evening meal along with one baby aspirin as per my onc.

The only other effect on me is weight gain , onc put me on lasix  three times a week it does help.  

Have a great daySmile

Nan

Remember it's not how many breaths you take but how many moments take your breath away
Bliz
Joined: Jun 2007
Posts: 489
Nov 25, 2007 09:23 pm Bliz wrote:

Thanks for the well wishes, Nan.  I am hoping for no side effects.  Weight gain would be no fun either. 

I will be starting the Femera while on vacation so at least I wont have to deal with work and alot of people in the early phases.

SLH
Joined: Oct 2007
Posts: 509
Nov 26, 2007 12:35 pm SLH wrote:

Hi daly,

I've been on Arimidex for 2 yrs.  I did start shrinking, so I'm also taking Fosamax, but I haven't had any side effects.  I did have hot flashes, but I attribute that to my hysterectomy, and they're slowly going away.

sally 

pamkh
Joined: May 2008
Posts: 3
May 14, 2008 01:20 am pamkh wrote:

I'd like to get input from others who are taking Arimidex and who are losing bone density.  I just learned that I have lost significant bone density in the 1 year that I have been taking Arimidex.  I also have quite a bit of pain and discomfort in my back and neck now.  I am concerned about taking prescription drugs and I'm sure that will be suggested by my doctor.  Is it realistic to think that diet and exercise can help to reverse bone loss?  Or are drugs the only answer now?

Thanks for any input you can offer.

Pam

NancyT19
Joined: Sep 2007
Posts: 11
May 14, 2008 09:07 pm NancyT19 wrote:

I took Femara for a little less than one year, not Arimidex, but found out last month that I too had suffered bone loss.  I went from having excellent bone density in March 2007 to having osteopenia in March 2008.  Needless to say I am not happy.  I went back on tamoxifen and the doctor also has me on Fosamax, which is no fun either.  I am hopeful that in about 6 months I can have another bone density test run and if I've recovered enough, will be able to stop taking the Fosamax.  Tamoxifen is good for bone density so I'm thinking that this is possible.  If you are a good candidate for switching off the AI and back to tamoxifen then its something to consider.  Before doing so, however, I'd get a CYP2D6 gene test to be sure that you metabolize tamoxifen properly.

nancysgirl
Joined: May 2008
Posts: 2
May 15, 2008 01:17 pm nancysgirl wrote:

i'm taking arimidex since february 07 and i am severely exhausted after simple exertion.-climbing 2 flights of stairs leaves me so exhausted i can barely speak and need to lay down for a few hours. i'm 79 and had a large tumor removed last year and a double breast reduction reconstruction as well , followed by radiation  therapy in february 07 . does anyone else find exhaustion to be a side effect and if so is there a remedy?

Coltsneck
Joined: May 2006
Posts: 255
May 20, 2008 09:26 pm, edited May 20, 2008 09:31 PM by Coltsneck Coltsneck wrote:
This Post was deleted by Coltsneck.
Coltsneck
Joined: May 2006
Posts: 255
May 20, 2008 09:26 pm, edited May 20, 2008 09:30 PM by Coltsneck Coltsneck wrote:
This Post was deleted by Coltsneck.
Coltsneck
Joined: May 2006
Posts: 255
May 20, 2008 09:27 pm, edited May 20, 2008 09:30 PM by Coltsneck Coltsneck wrote:
This Post was deleted by Coltsneck.
Coltsneck
Joined: May 2006
Posts: 255
May 20, 2008 09:27 pm, edited May 20, 2008 09:29 PM by Coltsneck Coltsneck wrote:
This Post was deleted by Coltsneck.
Coltsneck
Joined: May 2006
Posts: 255
May 20, 2008 09:27 pm Coltsneck wrote:

When you say you have a lot of bone loss over the last year, did you have a baseline bone density test to compare where you are now to where you were last year?  Or are they doing bone density now and saying you have bone loss?

I was diagnosed a year ago as osteopenic - on the road to osteoporosis.  I started Fosamax at pretty much the same time as I started Arimidex.  I have a lot of joint issues with Arimidex.  However, I am hoping that the Fosamax and the 1500 Mg of Calcium plus 1000 mg of Vit D-3 will prevent further bone loss.

Dansmom
Chapel Hill, NC
Joined: Feb 2008
Posts: 72
May 20, 2008 09:36 pm, edited May 20, 2008 09:36 PM by Dansmom Dansmom wrote:
This Post was deleted by Dansmom.
dizzybuff38…
Joined: Oct 2006
Posts: 69
May 21, 2008 05:21 am dizzybuff38 wrote:

Pam - I don't think it is possible to prevent bone loss by diet,exercise etc. I have recently seen a Professor of Endocrinology, referred by my bc surgeon (Onc discharged me after chemo and rads in 2004 and since retired) because he has an academic interest in side effects of Arimidex. I have had left hip, both feet and hand pain for at least 3 yrs now. Bone scan (not DEXA) showed osteo arthritis in both hips, hands and feet.  Professor advised I should stay on Arimidex and bisphosphonate Alendronic Acid, and Calcichew/VitD3. However, I can't stand the pain and saw my GP 3 weeks ago. We agreed I should stop the Arimidex for 3-4 weeks to see if the pain diminished - which it has. As both Arimidex and Alendronic Acid list bone/muscle pains as side effects, we had to try a process of elimination. I am seeing my GP next week and will ask for a referral to a new female Onc at my hospital, suggested by my gastro, as this lady has an interest in both bc and Crohn's (which I take weekly chemo, methotrxate for). I am hoping she can suggest something other than Arimidex, another AI or tamoxifen. I was only on tamoxifen for 2 months when Onc switched me to Arimidex. Had 4 yrs of Arimidex but as my cancer had spread, feel I need the protection of at least 5 yrs.

 I had a baseline DEXA scan done before dx of bc, which was slightly low (due to 30+ yrs of steroids), but a DEXA scan done a year ago showed significant bone loss (obviously due to Arimidex in part) and I am classed osteopenic. My mother had severe osteoporosis, so that is another risk factor for me. I had two spontaneous fractures in my feet last year (one a metatarsal, which put me in a wheelchair for a week and crutches for a month) so am concerned about further fractures.

Has anyone gone on to tamoxifen after Arimidex?

Thanks for any input.

Liz in England.

JuneTC
Traverse City, MI
Joined: Apr 2008
Posts: 5
May 23, 2008 01:10 pm JuneTC wrote:

Pam, I'm think that I did improve my bone density by greatly increased weight bearing exercise, consistent taking of calcium +D, and much better attention to the food I'm eating. My first DEXA was 2002 (at age 70) and my primary doc warned that I need to really do the above things, or he'd have to recommend a drug. He knew I wouldn't like that. In 2004, the bones were "better", and in 2006, "great". Now in 2008, there has been a decrease in one hip, particularly. They also changed the machine they're using at the clinic -- so it may be more accurate (or at least different).

So starting Arimidex means I will try even harder to find as many "natural" ways to enhance bone density as I can, and hope for the best.  I also started backpacking in 2003, and credit carrying the weight of a pack for nearly 800 miles up & down Appalachian mountains for much of these good results.

CrystalCat
CA
Joined: Jan 2007
Posts: 306
May 23, 2008 01:35 pm CrystalCat wrote:

I'm on Tamoxifen right now, but if I continue in "chemopause" (I'm 44), my onc says that Femara or Arimidex might be a better bet for me because I'm ER/PR 100%. However, I worry about osteoporosis. My mom (also a BC survivor, and also ER/PR 100%). had great bones until she took Arimidex; however, the Arimidex has made her NED for 6 years and she had advanced BC. :D So it's a tough choice and I'm probably going to seek out a second opinion. Bones or BC?

There are two means of refuge from the miseries of life: music and cats. - Albert Schweitzer
Dx 2/1/2007, IDC, 2cm, Stage IIb, Grade 2, 3/25 nodes, ER+/PR+, HER2-
karen1956
CO
Joined: Feb 2006
Posts: 1335
May 25, 2008 12:53 am karen1956 wrote:

I had my first DEXA scan when I started AI's and was borderline osteopenic.  15 months later I was borderine osteoporosis.  Started on Actonel and increased calcium with D to 2000mg/day.  That was about 6 months ago. Will have  DEXA scan in another 6 months.  I walk daily which onc says I need to do. PCP said that bone loss was also from chemo, not just AI's (who knows).   My mother is on Boniva, but did not start till in her 70's.  I started on biophosphonates at 51!!. I am just hoping that the Actonel and increased calcium do their job. 

Karen in Denver
choca1711
Palm Harbor, FL
Joined: Jul 2006
Posts: 157
May 25, 2008 10:56 am choca1711 wrote:

I had a baseline dexa before starting arimidex- a year later, I had become osteopenic and now also take fosamax. I will have another dexa later this year, so hopefully I will be back in the normal range.

In addition to this problem, I have also now suddenly got diabetes, which my internist says is likely caused by chemo and arimidex. So ladies, please make sure you have your blood glucose tested regularly too.

hugs and chocolate xx
Dx 4/24/2006, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
kc5
Morgantown, WV
Joined: Mar 2007
Posts: 3
May 26, 2008 08:01 pm kc5 wrote:

I started taking Arimidex in 06/2006; when I started taking it my onco and I discussed side effects.  I was told for some women the pain of side effects will lessen around the two year mark.  At the time all I could think was "Holy cow!  That's 730 days of pain!"  In March 2008 I noticed my joint/bone/tendon pain was lessening and by April 2008 I was at the point that I wasn't in pain every single day and I wasn't fatigued nearly as much.  I lost considerable bone density during the first year and was classified as osteopenic but have been holding steady in the second year.  So far I am not taking any drugs to combat the bone loss but I do work out with weights, walk, take Pilates classes and really push the calcium and Vitamin D.

JuneTC
Traverse City, MI
Joined: Apr 2008
Posts: 5
May 26, 2008 10:37 pm JuneTC wrote:

kc5 --

Thanks for your comments. I have just started Arimidex -- tonight will be my second pill. I'm hoping not to have your experience with pain for nearly two years. But the courage of your resolve, and the things you are doing to combat the bone loss are inspiring. I love to backpack and hike in the woods, and am searching for every additional way to strengthen my bones.  

Good luck to all of us!

lemontree
Joined: Jan 2007
Posts: 5
Jun 7, 2008 05:59 pm lemontree wrote:

I was taking Arimidex for 18 months without pain then I suddenly developed severe pain in arms and legs which prevented me from sleeping.

I could hardly walk and every task was like climbing a mountain. As I am very slightly built and have always been very active, I felt as if I was becoming a disabled person.

Six months later the pain went as suddenly as it had arrived.

Now I have been six months with only shoulder stiffness which is not a problem. 

I was told by the Specialist that this is not unusual and many people on Arimidex have no pain at all.  

jdg1
Rohnert Park, CA
Joined: Oct 2007
Posts: 563
Jun 8, 2008 04:22 pm jdg1 wrote:

CrystalCat,

You can continue on Tamoxifen even if you are post menopausal.  If you feel more comfortable with the Tamox then talk to your Onc.  I am just turning 44 this month and Dr. wanted me on the Armidex I told him that I would rather take the Tamox because it does not have the bone loss.  He said that would be fine.  I already have arthritis in my back so I didn't want to push any more problems.

Infiltrating Ductal In-Situ Stage IIB Grade 1 No node involvment, ER/PR + HER 2 -, Oncotype DX 17
Dx 5/30/2007, IDC, 0/2 nodes
ICanDoThis
Joined: Apr 2008
Posts: 428
Jun 9, 2008 01:41 pm ICanDoThis wrote:

JDG1

I'm on tamoxifen for the same reason. Like you, I have arthritis in my back, but I'm already osteopenic, with a few patches of osteoporosis thrown in.

My onc has been supportive, so far.

Sue 


Dx 12/28/2007, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
jdg1
Rohnert Park, CA
Joined: Oct 2007
Posts: 563
Jun 9, 2008 04:20 pm jdg1 wrote:

Sue,

Were you on the AI's before tamox?  I have been very concerned about the osteoporosis from the beginning and it wasn't until I had an MRI of my back that they found the arthritis, so I don't want to have to worry about anything else with bone loss.  The Onc was very supportive of me as well.

June

Infiltrating Ductal In-Situ Stage IIB Grade 1 No node involvment, ER/PR + HER 2 -, Oncotype DX 17
Dx 5/30/2007, IDC, 0/2 nodes
ICanDoThis
Joined: Apr 2008
Posts: 428
Jun 9, 2008 04:33 pm ICanDoThis wrote:

No - I had already had the bone problems and was on Fosamax and Vitamin D before I found the breast lump.

When I found out about this AI side effect, I was really frightened. I know that they called osteoporosis a silent problem, but my back hurt already.

Meantime, I've added weight lifting to my regime.

Sue


Dx 12/28/2007, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
laurie1429
Joined: Apr 2007
Posts: 3
Jun 9, 2008 07:31 pm laurie1429 wrote:

I've been on Femara for 6 months, had a DEXA right at the start and found that I was osteopenic, I am now on Fosomax and am also taking Meloxicam (an NSAID) for my joint pain (everywhere).  I dance, do pilates and walk a ton but hurt like heck in the morning and when standing up after sitting for a while. I just started having trigger finger and wrist pain. Hurting all the time is a drag and it interfers with sleeping too.  I think all off these side effects are pretty common, some have it worse than others. I am trying various alternatives to the NSAID since I'm starting to get some heartburn and with the combo of my current meds it can be a problem.  It's a bit depressing feeling like a little old lady when you're 55. What have folks been using for sleeping and pain?  I was taking Ativan for a while, was quite nice for sleeping but my doc was unhappy that it is so addictive. 

Roja1955
Joined: Sep 2007
Posts: 218
Jun 9, 2008 08:25 pm Roja1955 wrote:

I started Arimidex and within 2 weeks I was in a full blown flare of my Rheumatoid Arthritis.  Nothing helped with the pain.  Finally my onc told me to stop and take a two weeks break before we start another AI.  I hope Aromasin works for me.  I took Tamoxifen for 4 years, but it failed me).  I do plan to asked for the bone strengthening drug as well (now the lastest is it may help prevent mets/progression).


Dx 9/11/2007, Stage IV, 0/9 nodes, mets, ER+/PR+, HER2-
jdg1
Rohnert Park, CA
Joined: Oct 2007
Posts: 563
Jun 10, 2008 12:53 pm jdg1 wrote:

I am taking Calcium supplements and am just wondering if any of you are doing the same?  I believe I am taking 1500mg a day along with Vit D.

Roja when you say Tamoxifen failed you is this because you got another BC? 

I did read that Tamoxifen can stop working but how do you actually know this?

Infiltrating Ductal In-Situ Stage IIB Grade 1 No node involvment, ER/PR + HER 2 -, Oncotype DX 17
Dx 5/30/2007, IDC, 0/2 nodes
tym
Joined: Jun 2008
Posts: 89
Jul 17, 2008 11:18 am tym wrote:

I started taking Arimidex 5 days ago.  I told my Onco that I was concerned about taking it because I already have Osteopenia (I'm 48).  She told me that I ONLY have mild osteopenia in my hips and we'll do another bone density test in a year.  I'm really worried about bone loss, but my Onco doesn't seem concerned.  When I mentioned Tamoxifen, she just said "Oh, that drug is so old, the AI's are much better". 

I asked her if I should take something for my bones and she said that just Calcium w/D would be enough.  I feel that I have a reason to be concerned with bone loss, why doesn't she?

She even asked me if I wanted to be in a clinical trial of Arimidex.  I just stared at her, guess I was surprised.  

tami
Dx 3/22/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
Maryann1128…
Joined: Jul 2008
Posts: 2
Jul 17, 2008 12:21 pm Maryann1128 wrote:

To all of  you....

Take your calcium faithfully and more sure you are doing weight bearing excercise.  I have been on Arimidex for two years now and have osteoporosis. -2.7!  One year ago I was in the mid osteopenia stage.  I cried when I found out and immediately stopped the Arimidex.  I was not diligent in taking the calcium but I also did not realize how damaging to the bone Arimidex is.  I am now taking Fosomax and taking a break from the Arimidex for a few months.  The ache in the bones in my feet have finally stopped and I am feeling a little better.  I have to decide in 4 months what I want to do but my Onc does not really want me to go on tam. due to uterine issues.

I may not go back on anything at all, I have not decided yet.  It was bad when my wrists, ankles and jaw ached, but the ache in my feet was the worst!

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