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Topic: arimidex-side effects

Forum: Older Than 60 Years Old With Breast Cancer —

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Posted on: Jul 9, 2009 11:15AM

Newbie21 wrote:

Hello ladies,

My mom has been on Arimidex for over 3 yrs now. For the past few months she has been experiencing knee pain mostly in her right leg.  any input or similar side effect fro any of of you? Any side effects at all?  Thanks for your help.   Giulia

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Jul 9, 2009 06:59PM Alpal wrote:

Giulia - I've been on Arimidex for almost 8 months. Initally, I had mild hot flashes, but those seem to have gone away. I have had quite a bit of joint pain and I think that is a common side effect. I also have gained a lot of weight since starting Arimidex, which also seems to be a fairly common complaint. In the last 6 weeks, I have stopped gaining, and have even lost a few pounds so maybe that side effect is going away also. I hope so! If the knee pain continues, she should probably mention it to her doctor. Tell her to hang in there!

Allison Dx 7/2008, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jul 9, 2009 07:03PM pip57 wrote:

Oh yes.  Achy knees, hands, etc.  Advil is great.  But I too suggest that you have a doctor check it out.  It could be a strain or arthritis that they could do something more effective with.

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex Dx 2/1/2007, DCIS/IDC, Left, 3cm, Stage IIIB, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Jul 22, 2009 09:36AM spar2 wrote:

I was on it for 5 years and did have the achy joints, knees, hips, and ankles, hot flashes, and gained weight.  Newbie, how is your mom doing?

www.spar2.multiply.com Lets help make each other's life better
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Jul 22, 2009 10:24AM deborye wrote:

I have not read this on the Arimidex website but does it effect your teeth?  My back teeth are chipping.  Teeth are bone and Arimidex is known for bone loss.  I have dentist appt today and I will ask.  I have been on Arimidex for 2 yrs.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Jul 22, 2009 10:25AM deborye wrote:

I guess I qualify for the older women with BC, I will be 58 in Oct.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Jul 22, 2009 10:35AM swimangel72 wrote:

My teeth have also been chipping away - but that started before Arimidex - no doubt due to my post-menopausal status. It doesn't seem to be increasing in intensity - maybe all the calcium I'm taking is helping.

I am noticing that my toes feel tingly/numb at times.........first I blamed it on the anesthesia from my surgery, but now I'm wondering if that isn't also a side-effect of Arimidex? Anyone else have numbness in their toes?

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, Right, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+ (FISH)
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Jul 22, 2009 11:16AM annie-2 wrote:

Yes, Swimangel,

I had numbness in my feet and sometimes legs since about the first year of Arimidex. Having finished my 5 yrs. in May, I still have some numbness - but maybe not as much. I think the numbness comes from the damage the Arimidex does to the bones and that is going to be slow to resolve itself.

The numbness that I have now is mostly in the toe (big toes to be exact.)  I find that keeping the feet moving (wiggle - rub , whatever) helps to keep the circulation going --- much like we do for the LE. My dr. says that a lot of this comes with age - but the Arimidex makes it worse.

I have a friend that has the numbness in her hands and feet and if you look ----- both are se's of Arimidex. Add that to the anesthesia ---- and you get a double whammy.

Hope this helped some.

JO

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Jul 22, 2009 12:56PM ritajean wrote:

I have had severe foot pain on the TOPS of my feet and a sore left knee while on the Arimidex.  I took magnesium and vitamin D3 to counteract the pain in my feet and that has gone away.  My knee still bothers me, especially when I bowl or play golf.  I've been on Arimidex for 2 years and blame most of my aches and pains on that....although I suppose that some of them are also just age related.  LOL

Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jul 24, 2009 06:10PM deborye wrote:

 Nasty Teeth Had my dentist appt.  He does not think the Arimidex is the cause.  So 2 crowns and 1 inlay will have to be performed to fix my 3 chipped back molars.

No my teeth are not like that, LOL.







~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 17, 2010 11:27AM BonnieK wrote:

I've been taking Arimidex for 11 months and have had the usual aches, pains, hot flashes, etc.  I take vitamin D, Calcium, Magnesium and Vitamin C, but this past week I have begun having cramps in my calves and also have a very painful achilles tendon on one side that makes it really hard to go up and down stairs in the morning.  This pain and cramping is worst at night and is not from a sports injury, so I'm wondering if the Arimidex might be the culprit.  Anyone have similar symptoms?   

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Feb 17, 2010 11:38AM ananda8 wrote:

BonnieK,

Check your potassium levels.  For some reason older people do not absorb potassium as well as younger people.  Unfortunately the symptoms are the same for both too much and too little potassium so you may need a blood test to find out.

Dear All,

Please have your vitamin D levels checked.  AstraZeneca is starting a study to see if low vitamin D is the cause of bone and joint pain associated with Arimidex.

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 17, 2010 04:21PM Isabella4 wrote:

I've been on Arimidex coming up six and a half years. It has been really hard on me....but, I wouldn't like to be without it....its my safety net, albeit a VERY painful one. (I have 'extensive vascular invasion' so that keeps my head down to keep on taking this drug )

I have both hands with Carpal Tunnel, wear splints at night. Both feet with Plantar Fasiitis, feel as if my feet have curled up and become U shaped ! I can only wear backless shoes now. Slippers are much more comfy, but don't look too good when out shopping.

Heels?? Ha Ha Ha. NO way on this earth ! And I loved high heels.

My teeth have about had it, won't repair anymore, crumbled away slowly this last two years.

I went thru a stage, at about year 3, with terrible leg cramps, mainly at night, but they only come now and then nowadays. ( Tried Potassium, and quinine sulphate tabs, no use.)

I had 'clicky' fingers and toes, but they seem to have quietened down now. Also lots of joint pains, that certainly weren't there before the start of Arimidex, and a general feeling of malaise, and acheyness that never was there before.

I didn't have a bone scan at the start of Arimidex, no-one thought to tell me I needed one, and as a result, after lots of hip pain, and a request for a scan it was found that I had Osteopenia, I had to ask for Vit D and Calcium, which I should have been taking when I started Arimidex, again no-one thought to inform me, and if I hadn't asked for my scan I'd still be sat curled up in a ball thinking I had spine mets !!  

My Onc has consistently denied Arimidex is causing most of these symptoms, she says 'no-one else has reported anything like this'    ggggrrrrhhhh.

Isabella.

Dx 5/14/2003, IDC, 1cm, Stage I, Grade 1, 0/26 nodes, ER+/PR+, HER2-
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Feb 17, 2010 04:34PM ananda8 wrote:

Isabella,

Get your Vitamin D levels checked.  This article links bone and muscle pain from Arimidex to low Vitamin D levels.  Show it to your darling doctor.  Your vitamin D level should be at least 40-50 ng/ml

http://news.wustl.edu/news/Pages/6902.aspx

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 17, 2010 05:30PM Anna2 wrote:

Yes, I believe it is a side affect. I have been on Arimidex for 9 month now. I have experienced leg cramps in both legs almost every night. My legs don't bother me in the daytime, just at night. I take Calcium supplements. I think it is a side affect of the Arimidex, at least that is what the information that I read stated. It also said you should tell your doctor if your legs hurt. I told my oncologist, but he said it was not anything to worry about. I am 53.

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Feb 17, 2010 06:38PM molly52 wrote:

Isabella,Six and a half years.......You have my sympathy.  I am in my last year and counting every day until I can stop. I am curious why your onc has kept you on Arimidex beyond the 5 year point. To my knowledge, there is no testing proving the value of extending.

Lots of doctors keep saying  "no one else has reported anything like this" and will do as long as they remain in DeNile. I don't think they do us any good to deny our side effects. 

In Australia they are doing a study on side effects with an aim to try to improve them.  Their reason for doing the study is because 30% of women stop taking AI's because of side effects.  Tell that to your onc.

It seems like you have been through hell and back.

Have you considered getting a new oncologist, or at least obtaining a second opinion about remaining on Arimidex for so long?

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Feb 17, 2010 07:05PM deborye wrote:

No one informed you to take Cacium and Vit D?  That was the first thing my onc mentioned when she put me on Arimidex.  July 26th will be the 3rd year on Arimidex and yes I do have SE, I guess I am lucky they are not that bad.  My Vit D was in the normal range is what I was told and the bone density tests are normal also so far.  I am amazed how it can effect others.  Hugs to you and hoping something can help.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 17, 2010 07:47PM ananda8 wrote:

  I will be 67 years old at the end of the original five years.  How much estrogen will my body be making at that age?  If my onc wants me to stay on Arimidex at that time, I  intend to tell him the following:

"If the purpose of Arimidex is to stop estrogen production, then please measure my estrogen level today and in six months.  If there is an increase in estrogen at that time, then I will go back on Arimidex. If there is no increase in my estrogen level then I will stay off of Arimidex until such time as my estrogen level starts to rise."

Sometimes I think cancer treatment is based on habit rather than analysis.

Just some thoughts.

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 21, 2010 04:23PM Isabella4 wrote:

molly

In answer to your question as to why my onc. is keeping me on  Arimidex..she isn't...I requested that I be allowed to stay on because of my 'extensive vascular invasion', fully expecting to be turned down. I had read that a lot of American oncs were keeping patients on Arimidex going up to 10 years, and even longer, explained this to her, and my reasons to carry on and she said 'I can see where you are coming from, because of the vascular invasion you can continue for 'the forseeable future'.

Its NOT very easy to change oncs over here, the best I can hope for is to come across a red hot 'oncs assistant' which I did the last appointment. He spent over an hour with me, answering my questions last summer. MUCH better than the onc herself EVER did. I had total faith in him in that hour, more than all my other bc doctors put together, over the last 6 years. WHERE was he at the start of my journey??? Probably still in school !!!

Be well.

Isabella.

Dx 5/14/2003, IDC, 1cm, Stage I, Grade 1, 0/26 nodes, ER+/PR+, HER2-
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Feb 21, 2010 04:41PM deborye wrote:

I heard that also, staying on Arimidex for more than 5 years.  I am curious as to whether my onc will do that for me.  I was er/pr over 90%. 

I was 54 when dx'd, now I am 58, I do have the muscle aches and hot flashes but I am curious, has anyone experienced restless leg syndrome or developed cataracts?

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 21, 2010 04:55PM ananda8 wrote:

I have the beginning of cataracts.  They may or may not be related to Arimidex since my eyes are green and I spent 3 years in the Tropics out in the sun.

One side effect that has not been mentioned but has happened to me is the complete loss of my inner labia.  My doctor said it was due to Arimidex eliminating all of the estrogen in my body. 

Ladies,

You do not want to lose your inner labia.  It is extremely painful while it is happening because it hurts as they shrink.  After they are gone, you have very dry inner surface to the outer labia because the missing inner labia was the source of lubricant.  This makes it painful to sit for any length of time. It makes it difficult to sleep on one's side because the outer labia rub against each other without any lubrication.  I have to use cream every night so I can sleep.  I also miss the extra padding that the missing tissue gave. 

No one knows all the side effects of this extremely powerful drug.  At the end of my five years, I will have my estrogen levels checked and I will not go back on Arimidex until later testing shows the level going back up.  If my estrogen levels do not go up, then I will not take Arimidex.

I hope I didn't offend or embarrass anyone by the frankness of this post.

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 21, 2010 05:06PM deborye wrote:

Yup, my labia are gone too.  That's the estrogen being sucked out of our bodies.  I agree, I don't think the professional know all the side effects either.

How about the restless leg syndrome it was driving me and my DH nuts.  I doesn't happen every night, strange.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 21, 2010 05:26PM MinAZ wrote:

I'm at the three year point. I asked my onc last month about taking it beyond five years. He said studies are ongoing, but at this time they can 'offer it' to high risk women. So I guess it's our choice. I don't consider myself high risk, so don't expect to continue unless there is some new research by my five-year point.

As far as joint pain, I had gotten a fair bit after about two years. I had knee issues before, but Arimidex made things worse. I have a lot of trouble with one hip, but I think it's a piriformus muscle issue to a great extent. My trainer works on it before my workout and I'm doing much better. Also, I started taking glucosamine and that is helping a lot with my all joint pains. I'm still feeling old old old when I get up from sitting for a while, but things get better as I get moving.

Minz

Dx 10/15/2006, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Feb 21, 2010 06:22PM deborye wrote:

July 26th will be the 3 year mark on Arimidex.  It's doable.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 21, 2010 08:00PM ananda8 wrote:

deborey,

Here is a link on RLS with some interesting information.

http://www.rls.org/Page.aspx?pid=543

You may want to log everything you eat to see if you are missing any vitamins or minerals mentioned in the link.  FitDay is an excellent site and you can keep your log for free.  The report function will give you a break down of your daily nutrition as well as in total for any period of time you wish.

http://www.fitday.com/

I hope this helps.

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 22, 2010 06:33PM deborye wrote:

It is not consistent and when I do have it, it is only when I am in bed trying to sleep.  My vitamin levels are in the normal range.  But I will log in the times and what I have eaten during the day.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Feb 22, 2010 07:24PM ananda8 wrote:

When I logged everything for a week into FitDay, I found out I was not getting enough calcium and D but that did not surprise me since I don't eat dairy.  What was surprising was I was not getting enough Vitamin E or Pantothenic Acid.  I was very low in Vitamin E.  I stopped my multi-vitamin because all of my other vitamins were at or above 100%.  I now take Vitamin E once a week.  I have increased my D and have always taken calcium.

“Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.”
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Feb 23, 2010 06:50AM Cat1 wrote:

Ladies, I've been on arimidex only 4 months with the hot flashes, joint pain and weight gain.  The joint pain is the hardest.  Sit even for a short period of time and your so sore and stiff to get up it's like I'm 90 years old. 

I'm having numbness in my arm at nite and was wondering if anyone also has this problem.  It's only on the cancer side.  I noticed that this is a possible side effect when I looked at the info sheet from the pharmacy.  I mentioned it to the onc and he did the usual that it wasn't from the drug that it was probably a pinched nerve.  Well, I didn't have this problem before taking this drug so bull. 

Anyone else have numbness in their arms? 

Plus my onc said that after I have my hys this summer, I could stop taking the drug!  Anyone else every told this?  I'm going to hold him to this statement, I want off this drug!

You guys have some good info.  Thanks for sharing!

Dx 2/5/2009, IDC, 6cm+, Stage IIIA, Grade 2, 2/8 nodes, ER+/PR+
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Mar 14, 2010 09:25AM aj21 wrote:

I have been on Arimidex for 2 years now after being on Tamoxifen for 2 years.  Tamoxifen was not working for me - the hot flashes, bloating, anxiety was unbearable.  Arimidex was fine for a year but now I have severe pain in my feet, knees, hips and cannot move without pain.  Also my left arm goes completely numb at night. Fine during the day.  I thought it was due to all the IVs and chemo that had damaged all the nerves and ruined the circulation.  I sleep with a pillow under my arm.  Not much help from the oncologists - all they care is that you don't have cancer any more.  

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Apr 17, 2010 04:03PM MiracleMileM wrote:

The joint pain and creakiness got a lot less bothersome when I doubled my vitamin D3 (now 6M) and omega 3.  For those leg cramps, immediately stand up and stand on the toes of your cramping leg.    

I keep close watch on my potassium and calcium - blood test once a month before zometa and both are fine. 

 But no solution for the extra weight and budha belly side effects.  Maybe a fat farm.

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Jun 3, 2010 06:37AM jamin40s wrote:

I agree with notself about the estrogen levels they told me the chemo sterilized me. I had the testing done and my levels were post menopausal.  I am only 47 and I feel like I am 90 with the arimidex side effects. I am going to proceed with my own study and go off it for a period of time. I don't believe that at 47 all of this pain is "age related" 

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