arimidex

[Sandra Paquin]

Helen, I am so sorry to hear what you are going through. I have a very similar story. I am 38 with 3 sons (6, 10 and 15). I had a hysterectomy in May because Tamoxifen was damaging my endometrial tissue. After my hysterectomy, I was put on Arimidex. Within a month or two, I could barely walk. I quit taking it. My doctor was okay with it because my ovaries have been removed. I'm getting better, but my joints have a little bit of residual pain. It has gotten much better, though.

[Rebecca]

I have been on Arimidex for almost 4 years (May 2004) after being treated with lumpectomies and 6 and 1/2 weeks of radiation for DCIS. Up until my cancer I walked 3 miles a day for 5-7 days a week). Within 6 months of starting Arimidex I had knee and wrist pain that was excrutiating.I developed carpal tunnel syndrome that was so severe that the neurologist who did my nerve testing before the carpal tunnel surgery couldn't get a nerve response in either arm until well above my elbows. I also developed trigger fingers in both hand.I have had 2 surgeries to correct the above but I still experience pain and aching in my wrists and fingers, sometimes to the point where its hard to lift a magazine. As for my knees , I have developed severe osteoarthritis in both of them,both requiring total knee replacements. I have not been able to do any exercize walking in 3 years.I also have sarcoidosis, and am on long term steroid (Prednisone) therapy, which still doesn't eliminate the pain and stiffness of my knees.I too have burning sensations in my back and tingling in my toes and hot flashes that leave me drenched.Are the makers of Arimidex reading this? Do they care?

[Vivien]

I had early BC lumpectomy; 25 sessions of radiotherapy no lymph nodes. I have been on Arimidex for 3 1/2 years and now I get the most appalling pain across the muscles on the bra line; anxiety; IBS and generally feel unwell. My oncologist tells me it is not the Arimidex.........I think that it is!

[Merry]

Sheila wrote:

It breaks my hear to hear your stories. I know that I got excellent treatment at Northwestern Univ Hosp (Chicago, and none of the doctors have stopped working with me just because I said I wouldn't take the Arimidex. It is a very individucal decision--everyone's case is different and there risks--but we women have the right to stand up for ourselves. I'm not telling anyone not to take it--I just hope that you all know that you do have a choice. My radiation oncologist and I have a running joke--she brings up Arimidex every time I come in and I smile and say, "Nope, haven't changed my mind." She listened to what I had to say and agrees that the decision is mine. We still get along just fine! I'm 52 years old and the quality of my life is just as important to me (if not more so)than the quantity. That's just my personal situation and opinion. And--I feel great!

Am pleased to hear someone who seems to have the guts to just say NO, and it seems reasonable enuf to do just that. Have written before, and am afraid to stop taking Arimidex, even tho' I've been on it for almost 3 years. I just know what the estrogen did, and I took that for 17 years, and nobody questioned anything about it until a few years ago, and people stopped taking it right and left. Am sure the long use of the drug probably caused my grade 1 tumor, and eventually the bilateral mastectomy chosen. I feel with no breasts, I cannot get cancer there, but the Drs. say it's the possibility of cancer occuring somewhere else is the reason I should take it. It doesn't make sense to me, and if it helps lots of women, then fine, but it's not even been on the market that long, to have good test results. Just sounding off, as frustrated, and afraid to do what my heart tells me, just stop taking it.

[PAL]

I AM NOW TAKING ARIMIDEX FOR 1 YEAR AFTER BC LAST YEAR. I AM IN SEVERE BONE AND JOINT PAIN MOSTLY IN MY LEGS I CAN BARELY WALK.ALSO I HAVE BURNING AND TINGLING IN MY HANDS AND JOINT PAIN TOO. I JUST STARTED TAKING OSTEO BIO FLEX WITH MSN FOR ONE WEEK IN HOPES THAT IT WILL HELP. I AM ALSO WONDERING IF IT IS WORTH TAKING THIS MEDICATION AND WHAT KIND OF LONG TERM EFFECTS IT WILL HAVE ON MY BODY.ANY COMMENTS WELCOME

[YoungChick]

I am 37 and I have been on Arimidex for 4 years now. The first year I had very severe joint pain, but that subsided. That said, I have very sensitive joints, i.e. I suffer from bursitis frequently from doing the smallest activities.

Also, I am having very bad G.I. problems. Used to go between both constipation and diarrhea, now for the last 2 months horrible diarrhea. I have had lots of tests, and now I am suspecting that it is the Arimidex. Is it okay to take an Arimidex vacation? I think I might :)

[Muriel]

I am new to this board but I thought I would respond re: arimidex. In 2002 I was diagnosed with stage 2 breast cancer. It had gone to the lymph nodes so I has a mastectomy and 6 wks of radiation. In May of 2003 I started the arimidex and I do have some numbness from my feet to my butt and that happens at night when I am sleeping. I walk 3 miles 5days a week and I play some tennis. I am seeing my oncologist tomorrow to see about the arimidex as I have now been on it 5 yrs. I was thinking I am kind of nervous about going off it as I seem to not have too many problems with it. Am anxious to see what the oncologist tells me tomorrow. I am sorry to hear about all the problems other women seem to be having. Hang in there and hopefully something better will come along. Best to all of you. :)

[Claire in FL]

I had Stage II with chemo, lumpectomy and radiation. Took tamoxifin for 6 months, hated it and asked to switch to Arimidex in 2002. I stayed on in for almost 6 years but 2 months ago I took myself off it for a drug holiday. How I am feeling after 2 months off?

Libido is slowly coming back.
Sleeping through the night.
NO more hot flashes.
More energy, bouncy step
Knees feel young again
Not depressed anymore
No more daily diarreaha
Lost 5 lb.
Blood pressure down slightly

I talked with my husband about the risk of going off it, and we both agreed it was worth the risk since my quality of life is so much better. I was looking at taking an anti depressant, bp meds and what else....medicating to counter act the chemicals in Arimidex is just too much.

Wish me luck...

[Claire in FL]

I forgot to add that my teeth started to fall apart. 5 root canals in 5 years. I took Calcium and D the whole time, but it didn't help the teeth.

[MonicaB]

I was on Tamoxifen for 2 years followed by Arimidex for 3.3 years. I was just switched to Aromasin. All of you folks unhappy with Arimidex may want to try AROMASIN. The doctor at CTCA told me that it would take 3 months for the Arimidex to leave my bones. I just had a root canal on Monday and now I believe that I may need one another tooth in the same quarter of the mouth. I looked up "Arimidex teeth" and found this site. My bone pain has steadily decreased since going off Arimidex and I definitely am not as fatiqued. I still have to sleep on a pillow bed to be comfortable. I have taken a GNC product with 1500 mg Glucosamine, 800 mg of Chrondroitin and MSM (not sure of the amount) for the last two months. My finger joint pain is definitely improved. I see there is a clinical study going on for women on Arimidex that offers 500/400 Glucosamine/Chrondroitin so the medical community is getting the idea but maybe are not dosing high enough. Try AROMASIN - its longterm effects are probably not known yet but it is a definite improvement over Arimidex. Am interested in hearing how widespread sudden onset of multiple tooth problems are.

[Claire in FL]

Thanks for the info! I am going to see my oncologist next week so I guess we will have that discussion then. I am going into month 3 off Arimidex and I cannot get over how much better I feel. I think I was in denial, and it took reading these blogs to realize that I really did have symptoms and that maybe I should see what it was like off the drug.

I still have a terrible nerve damage type of pain in my bad arm (the side with the lymph nodes out) but it isnt as bad as it was about 2 months ago.

It is kind of scary going off it. I am thinking about BC recurrance more often now, which is the bad side effect. Thanks again for the good info

[Claire in FL]

My mamo this week was clear, so I am in year 7 of remission. Still off Arimidex. Feeling more energetic, happier, not as angry all the time, no hot flashes, better sex.

I did some googling and decided to take curcumin (tumeric)supplements and flax seed oil tablets. Plus multi vitamins and calcium +D. Feeling like my old self again.

My onc said that there are no clinicals out there to judge what 6 years after with the aroatase inhibitors so it was more of a safety precaution to go over the 5 year mark. I think I am done with them, and will take my quality of life over the safety in drug prevention.

[Tammy]

Lois wrote:

<quoted text>
I have been on Arimidex almost 3 years and my teeth are now chipping. Never had a previoous problem. also my dentist became alarmed at my last exam due to white patches on my gums, sent me to an EMT doctor who did not see any problem, he felt the white patches might have been due to the chemo and radiation but now I am wondering if this is another side effect of Arimidex. Is anyone else experiencing similar problems with their teeth, mouth or gums?

I have been on Arimidex for about a year and a half. I have metastisized to my spine; originally diagnosed in May 2003. Chemo, mastectomy, radiation. Radiation twice more with second bout. Anyway, about a month ago, one of my front teeth broke off on the inside -- I,too, have always had the best teeth in my family. Had it fixed last week and tonight the other front tooth chipped off! I wasn't sure if it was the Arimidex or the Zometa I'm on, but after reading all these entries, I'm leaning towards the former. Any ideas?

[Liz]

I came off Arimidex last August but last week one of my teeth broke off on the inside.This also happened when I was taking Arimidex. I subscribe this to Arimidex as I have always had very strong teeth.

[Susan]

Geez! I was only on Arimidex a month before I cracked my first tooth. They capped it, but I ended up having to have a root canal on the tooth when it abcessed. Then I had to have a root canal on another tooth - this time a front tooth- within a month. I have tingling/burning sensations in my wrists, right forearm, my right thigh, my right ankle...actually, they are pretty random. Just pop up whenever, but mainly on the right side.

I'm still trying to figure out why I'm taking this drug, considering I've had a complete hysterectomy.

I'm switching to Aromasin to see if it works better for me. Wish me luck.

[Cynthia Williams]

Liz wrote:

Here's a side effect not mentioned so far.I have always had very strong teeth but during the last year they have started to break off. It has suddenly occurred to me that this may have something to do withh Arimidex.Have any of you experienced this problem?
Also a question for Kathleen - you say that you wish that you had chemo. I'm takng Arimidex even though I had chemo - are you saying that maybe I don't need to take it.

I recently had 6 caps put on my front teeth. They weren't great to begin with but after three years of Arimidex they were chippng and cracking. I didn't associate this with side effects but am now wondering. My worst side effect is nausa, it's constant. Of course I have not troube eating and eat really weird things to get rid of it. I don't know how much more weight I cand gain and still be healthy. It's frustrating.

[Claire in FL]

Claire in FL wrote:

My mamo this week was clear, so I am in year 7 of remission. Still off Arimidex. Feeling more energetic, happier, not as angry all the time, no hot flashes, better sex.
I did some googling and decided to take curcumin (tumeric)supplements and flax seed oil tablets. Plus multi vitamins and calcium +D. Feeling like my old self again.
My onc said that there are no clinicals out there to judge what 6 years after with the aroatase inhibitors so it was more of a safety precaution to go over the 5 year mark. I think I am done with them, and will take my quality of life over the safety in drug prevention.

Well I spoke too soon. In December was diagnosed with BC traveling to my lung. now doing chemo, etc. with update that I will be back on Arimidex indefinitely. I stopped the drug in April. Not exactly a drug holiday....

[Ann Guiles]

My daughter -59 - had stage two breast cancer - 15 months of chemo - partial mastectomy - 7 weeks of radiation, now on Arimidex, suffering from numb fingers, toes and mouth - oncologist said nothing to be done but live with it - does anyone out there have any suggestions? She is really suffering - wondering what wuld happen if she went off it!

[Marilyn]

Ann, I had to stop taking Arimidex four months ago due to extreme side effects.
It got so bad that one day while out at a restaurant, I could no longer walk.
I had been on the pill for 23 months at the time. I was getting the same kind
of treatment from my oncologist as your daughter. No help, no options, just
"take the pill." I was on a cane for several weeks, and still have difficulty with
walking--along with a trigger finger. My hand had become almost useless.
I am still in some pain, after seeing a hand doctor and wearing a splint and icing the area regularly. I am now in the middle of physical therapy, hoping
I can get over the terrible weakness (the pain has just about left) from my legs.
I still have to go up the stairs one at a time.

I changed oncologists because of his lack of sensitivity and just plain lack of straightforwardness. He didn't want to hear about my other side effects and didn't prepare me for any of the many side effects I endured.

My new oncologist wants me to begin Femara. I see her Monday, and hate to
go through the sleeplessness, dizziness, pain and ache, and do not want to
become a cripple again. Also, my bone density has gone down considerably.
Something else my former oncologist was not truthful about with me. I was stage one ductal, and am still wondering if I just should stop before my body
gets unreparably damaged.

It sounds like youur daughter needs to see about another oncologist. She has been through enough.

[Ella]

Sheila wrote:

It breaks my hear to hear your stories. I know that I got excellent treatment at Northwestern Univ Hosp (Chicago, and none of the doctors have stopped working with me just because I said I wouldn't take the Arimidex. It is a very individucal decision--everyone's case is different and there risks--but we women have the right to stand up for ourselves. I'm not telling anyone not to take it--I just hope that you all know that you do have a choice. My radiation oncologist and I have a running joke--she brings up Arimidex every time I come in and I smile and say, "Nope, haven't changed my mind." She listened to what I had to say and agrees that the decision is mine. We still get along just fine! I'm 52 years old and the quality of my life is just as important to me (if not more so)than the quantity. That's just my personal situation and opinion. And--I feel great!

I too have refused the Arimidex, after being treated with TCH for breast cancer this year (2009) and haveing a bi-lateral mastectomy. Wonder how you are doing now -- your post was in 2006.