Tamoxifen and joint pain

Tamoxifen and joint pain

Postby Dianne T. » Wed Nov 22, 2006 7:37 pm

I was on tamoxifan for 6 weeks and began to feel very unwell, including having severe joint pain, throughout my body and almost unbearably in my thumb joint. My oncologist took me off tamoxifan immediately, saying it may have been caused by the tamoxifan, and because it would probably improve my chance of reocurrence of cancer by 1 % anyway, I didn't need to be on it. He told me there is a 6 to 8- week "wash-out" period for the side effects to be washed out of the body. I hope this is encouraging to some of you. I am praying this pain will cease. I've been off about 4 weeks and the pain actually seems to be even worse, but I am not giving up hope.
Dianne T.

Tamoxifen and joint pain

Postby pharmstudent » Mon Mar 05, 2007 1:53 am

There are currently studies being done on post/pre menopausal women taking Aromatase inhibitors (AI) (breast cancer drugs).

Tamoxifen is an older first generation cancer drug (usually the older 2nd, 3rd generation drugs are better with less and more known side effects and are in clinical trials longer), So Doctors wouldn't know if it is or isn't causing the joint pain, but scientists will know soon. The reasons why tamoxifen didn't undergo longer clinical trials because of the benefit/risk ratio--more beneficial to use the drug sooner and save more lives and study the long-term, short-term side effects later. Usually a drug takes 10-15 years before it hits the market unless its extremely beneficial to society.

AI may cause several generally mild side effects, including insomnia, arthralgia (joint pain), bone loss, vaginal dryness, dyspareunia (painful intercourse) and loss of libido (loss of sex drive).

(Some people also take ******* for there high cholesterol can cause muscle pain or enhance it.)

ALways Consult your doctor and pharmacist before you take other medications to relieve side effects.

Tamoxifen and joint pain

Postby Allie » Tue Mar 06, 2007 10:46 am

This is the page on Imaginis that discusses Tamoxifen, and the findings of a recent study by the University of Pennsylvania's National Adjuvant Breast and Bowel Project (NSABP).
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Tamoxifen and joint pain

Postby karen stilwell » Sun Mar 11, 2007 12:13 pm

It has been a while since I visited this site. Here is an update on my story. I quit Tamoxifen on August 24, 2006 after being on it for one year. I made a deal with my Oncologist that if (during my January 07 visit) my estrogen level had gone back up I would get back on the medicine. I am 52 with the estrogen level of a 35 year old. My Breast Cancer fed on estrogen and my body just doesn't want to give it up. The extreme joint pain we are experiencing is an estrogen withdrawal symptom. I have discussed having a hysterectomy and have been assured that my body would really hate me if we did that! I have been back on Tamoxifen (half strenth only) for 4 to 6 weeks now and my hands and feet are swollen to the point I can barely type. It takes two hands to hold a glass of water, my lips and swollen, my mouth is breaking out inside, and gripping the stearing wheel to drive is almost impossible. When I get off the medicine it takes 48 hours or less for all my symptoms to go completely away. The new "deal" I made with my Oncologist is to take Tamoxifen for as many days in a row that I can stand it and then take a week break to get my extreme pain under control. So far that is working but sometimes I wonder if it is all worth it. And then I look at my Grandchildren and say "Yes it is". Once I have been off the medicine for a few days it makes me very sick and dizzy to start it back. My Oncologist said he wants me to take the Tamoxifen to keep my estrogen under control so my Breast Cancer will not come back and attack my Liver. He isn't worried about it coming back in my Breast. Imagine that! Having Breast Cancer in your Liver! So...... to keep my Liver (and other organs) safe I guess I will put on a smiling face and put up with the horrible joint pain I am suffering.

Remember, the only way something becomes a big deal is if you allow it to! So keep a smile on that face and say your Prayers every morning and every night. May God Bless every one of us and give us the strength to endure what we must.

My Love And Best Wishes To You All

karen stilwell
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Tamoxifen and joint pain

Postby Jill1962 » Sat Mar 31, 2007 12:57 pm

I was just looking for info about Tamoxifen and joint pain, I have been taking Tamoxifen for a week and now have pain in my big toe and cramps in my legs similar to cramps before my period, I had the same pain in my toe while taking Taxol. My Oncologist told me that joint & muscle pain is normal after Taxol and that it will eventually ware off. I am always stiff after not moving for a while and then it takes about 30 seconds to get moving again. Having said all that I'm off to play a few hours of Racquetball this morning so I won't let it get the best of me!
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Tamoxifen and joint pain

Postby cshook » Sun Jul 22, 2007 9:59 pm

I have been on tamoxifen for 9 mos. and the joint pain just started all of a sudden. I had a/c and taxol, my whole body hurt while taking the taxol but it stopped when the treatments stopped. I will be discussing coming off the tamoxifen next week with my Dr. My family physician tested me for RA but the test were normal. Coincidently since my treatments stopped I became hypothyroid.
Once I get moving and keep moving I am fine, luckily I have a job where I constantly move and I also had to join a gym.
I'll let you all know how I make out with my Dr.
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Tamoxifen and joint pain

Postby rglduluth » Thu Sep 20, 2007 2:21 pm

I have been on Tamoxifen for just over 4 years following a lumpectomy and radiation treatment for DCIS. I recently learned from a friend who just started on Tamoxifen that she was experiencing joint pain and was quite certain it was caused by the drug. This was new information to me and so I googled Tamoxifen and joint pain and landed on this sight. It has been very interesting to read the posts since this forum started... For one... I have had joint pain that seems to have started shortly after I started on Tamoxifen, and it just seemed to come from "nowhere"... It never occurred to me that it could be Tamoxifen related... but my feet hurt all the time (sometimes it feels like I have a broken bone) Getting out of bed in the morning is painful, as ina addition to my feet, my ankles hurt, my knees hurt as do my shoulders. Now I'm thinking that it isn't just "bad genetics" and I'm considering whether I should go off of the drug. I am active and get regular exercise, but the pain is starting to interfere with my desire to do things.
A 2nd issue that really caught my attention was a posting by someone who experienced the onset of severe dry eye after going on Tamoxifen. I also have severe dry eye which has triggered a neuromuscular disorder called blepharospasm. Is this all connected to Tamoxifen? How will I ever know... but I've tried everything for the dry eye and my ophtamologist considers me to be a "baffling" case as nothing seems to work for me. Any one else having problems with dry eye? thanks!
PS my message icon is wearing sunglasses because my dry eyes are so bad that to go outside, I must wear special sunglasses with eyecups that seal my eyes from the air movement! :-)
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Tamoxifen and joint pain

Postby Sandy Eiler » Wed Oct 10, 2007 6:18 pm

I have read with great interest your complaints of your joint pain. I had BC 18 years ago and chemo put me into terrible menopause. My biggest complaint was the joint pain that i experienced. I would wake up every morning with such pain in my hands that i would almost cry. Tons of other ugly symptoms. I was so miserable and scientifically should not have done it but I went on HRT. I figured that if I had a couple of years to live I wanted to be me. I was so annoyed that when my oncologist told me that he had never been sued I told him that most of his patients died. Within 3 days of replacing the estrogen in my body my symptoms disappeared. I am only telling you this to alleviate your mental doubts that you are wrong about the cause and effect of the drug you are on. Estrogen blockers cause joint pain. Remember that Astra Zeneca is also the largest producer of agent orange and PCB's.

Sandy Eiler
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Tamoxifen and joint pain

Postby Judy C » Sun Oct 14, 2007 3:55 pm

I have been on Tamoxifen for 11 years following Stage 1 breast cancer which was multi-focal so required a mastectomy. I have had many lupus/arthritic type symptoms since I was 29 (I'm now 61), so it's difficult to measure how much Tamoxifen has caused. This year I began to have periodic leg, ankle, toe and knee pain which by reading the posts may relate to the Tamoxifen. I have lived with pain so long and it's not so severe or consistent that I can't live with it. I have, though, noticed immediate pain or increased pain if I get off my 3 daily tablets of Glucosamine 500mg/Chondroitin 400 mg. (In researching Chondroitin I found many manufacturers put much less in the tablets than the amount listed on the label--some as little as 4%. The article said that when Walgreens Double Strength Glucosamine 500mg/Chondroitin 400mg was tested, it contained the amount stated on the bottle.)
I'm on 800 mg Ibuprofen daily with helps my arthritis and also my difficulty breathing (another symptom of Tamoxifen--or it could be a relapse my connective tissue diorder--I don't know which). My current main concern is my short-term memory loss which has become very noticable for several years now. I've googled "Tamoxifen memory loss" and found many on chemo and/or Tamoxifen are having this problem. I'm still researching the memory loss, but have found the dietary supplement Acetyl L-Carnitine helps very much. Also I've been able to cut out many stressful situations that cause the memory to act up--that has helped a lot.
When I was trying to decide whether or not to get off Tamoxifen at the end of the recommended 5-year period, I prayed for direction (I am a missionary in Belize without access to good medical care except when I go to the States--so I get many opportunities to practice my faith!). That week a friend came by and brought her sister who was dying of bone cancer. She said she had stage 1 breast cancer, no chemo and 5 years of Tamoxifen the same regimen I was on. Not experiencing any further difficulties, at the end of the 5 years she got off Tamoxifen. Within 1 year she had terminal bone cancer and only lived 2 or 3 more years. She said that the cancer was lying undetected in her bones and the Tamoxifen kept it at bay. When she discontinued Tamoxifen, the cancer spread quickly. She told me, "Never, never get off Tamoxifen." That was 6 years ago and is why I'm still on it. I'm now researching more current research etc. but must balance any decision with those words of warning.
Judy C
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Tamoxifen and joint pain

Postby Iris » Tue Oct 30, 2007 1:54 pm

Thank God I found this web site! I had a feeling Tamoxifen was causing joint pain, especially my knees. I have another side effect which may be just old age-I'm 63. I have been on T for almost a year and suddenly, about 7 months ago, my belly "dropped". I have a different figure now. Anyone else?
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Tamoxifen and joint pain

Postby mel72 » Sat Nov 03, 2007 10:59 pm

I'm glad to know that I am not crazy! I have been on tamoxifen for 4 months and I have started having pain in my hip, knees, feet and recently in by elbows. I'm 35 and at times feel like I'm 85. I have a follow up appointment with my oncologist on the 16th and plan to discuss this in detail with her. Any tips for meds to take to help with the pain? Anyone had any good advice/info from doctors concerning the pain?
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Tamoxifen and joint pain

Postby annieroonie » Mon Nov 05, 2007 10:01 am

This is the 1st time to this website looking for info on joint pain in connection with Tamoxifen. I've been on the drug for a little over a month. Everything was pretty much no big deal until my fingers started swelling with joint tenderness in the past couple of days. What I have noticed after reading the other joint pain/Tamoxifen postings is that no one has mentioned the possibility of caffeine being a culprit in cahoots with the Tamoxifen. I'm a heavy coca-cola drinker and I also love my coffee. Has anyone found any info on the caffeine connection?
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Tamoxifen and joint pain

Postby annettefarrell » Mon Nov 12, 2007 6:36 pm

Ladies I am getting really concerned reading this forum. I am 40 years old and premenopausal. I was diagnoised with BC in March this year, aged 39. I already knew, but my bone scan showed I have arthritis in lumpar 5 and 6 of my back, arthritis in both knees and also have no cartlidge. About 5 weeks after 4 cycles of AC Chemo I notices my hips being very stiff if I was sitting for a while or driving for a while. I am due to meet my Oncologist on Wed this week to discuss the Hormone Therapy I will be put on. I am very concerned that my joint problem will get even worse with Tamoxifen. I have two young children so I need to go on Hormone Therapy and also work full time. Is there any other better option out there for me? Advise would be greatly appreciated.
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Tamoxifen and joint pain

Postby Loudearmas » Mon Nov 19, 2007 9:56 pm

I've been taking tamoxifen for 4 years now after single mastectomy, chemo. Although, I've experienced joint paint on and off in the past, recently it has become really bad. I feel it in my ankles, hands, knees, elbows.....I've been wondering what the heck it's from. I guess I should talk to my oncologist about it. I only have one more year on the med, but not sure how I'll feel if the pain gets worse. I also am on zoladex. anyone else?
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Tamoxifen and joint pain

Postby Melody » Wed Nov 21, 2007 2:41 am

To all ladies,
yes Tamoxifen causes bone pain, dry eyes, weight gain.. so on and so forth.
I am writing from my mother's experience with this drug. She did not have chemo but did have radiation. She is taking this for prevention. We have a family history.

What she have tried is glucosamine/chondrotin combo. She told me it does work. I bought her the liquid one. The tablets are too large to swallow. I would also recommend taking calcium supplements.

Her leg pain and swelling have started about 10 months ago. She is on Tamoxifen for about 3 years. I hear her complaining almost every day. It's sad.

I suggest taking pain relievers such as Tylenol, advil, (they also come in pm these are with benadryl) it can make you sleep. If these don't work, ask your doctor for prescription pain relievers. But be cautious, b/c they will make you drowsy and sleepy. It's hard for you and for her. She babysits my child. My mother was prescribed ******** (ultram). This drug works! BUT it can knock you out!! She was so groggy. All she wants to do was sleep....

other advice: heat therapy, massage, maybe acupuncture. Although, they temporarily relieve pain, it is better than nothing.

Currently, research is being done on Tamoxifen vs. Evista. They are both beneficial. It's just that Evista does not have the side effects that Tamoxifen have. Hopefully, they will come up with better meds soon.

In the meantime, if you are put on Tamoxifen, get routine follow ups. Eyes checked, see your gyno for any abnormal bleeding. My mom have developed cysts. They are harmless, but can be painful.

Take care everyone and stay strong!!!

Please, if there's a natural remedy out there for bone pain, spread the news! Help us all out.
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