We are 144,987 members in 73 forums discussing 114,800 topics.

Help with Abbreviations

All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Tamoxifen and Joint Pain

Topic: Tamoxifen and Joint Pain

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Nov 18, 2011 07:17AM

dblh1227 wrote:

Just wondering if anyone else taking tamoxifen is suffering from joint pain?  I stated tammie about 8 weeks ago.  After about 3 weeks on my joints started hurting more than usual (I know I probably have some arthritis).  It is worse in the morning and late at night.

I have read so much about SEs from Tamoxifen.........I don't know what to believe anymore.  It seems Doctors don't want to even consider what the tamoxifen could be causing as far as SEs

Thanks,

Heidi

Log in to post a reply

Posts 1 - 15 (15 total)

Log in to post a reply

Nov 18, 2011 08:29AM J9W wrote:

Heidi,  your last sentence sums it up.  My docs repeatedly told me that tamox wasn't causing my joint and bone pain. Which I never  had before taking it and since quitting it, it's almost gone away. After about 4 months on the drug I realized I could no longer walk up a flight of stairs without stopping at every step! Then my thigh bones started to ache and throb - bad enough that when this happened it would stop me in my tracks. I've been off tamox for a year now and am back to being myself. However, let me point out that my dx is the same as yours, only it came in August 2009, and sometimes I feel like I'm playing Russian Roulette because I'm not on any drug. But I can walk and run and jump again without pain. Plus, beware of depression on this drug. I had never been depressed but after about 10 months on it, I realized I was crying at the drop of a hat. That too disappeared when I stopped the drug. 

DCIS, grade 3, 2009. Right mastectomy, tamoxifen for only 11 months.

Log in to post a reply

Nov 18, 2011 08:32AM juliet62 wrote:

it seems to hit my knees especially the week before my period 

Dx 4/21/2011, DCIS, 1cm, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2-Surgery 04/06/2011 Lumpectomy (Right)Radiation Therapy 05/23/2011 ExternalHormonal Therapy 07/26/2011 TamoxifenSurgery 04/18/2012 Lumpectomy (Right)
Log in to post a reply

Nov 18, 2011 09:22AM dblh1227 wrote:

Thanks for the replies..........sometimes I worry about mets - I think we all do to a certain extent even with a DCIS diagnosis.  My oncologist asked me to give it 3-6 months to see if these SEs (which he does not believe can be caused by tamoxifen) lessen or disappear.  We'll see........

 Thanks,

Heidi

Nobody promised me a rose garden...but God gave me one anyway!!

Dx 5/24/2011, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 18, 2011 09:35AM J9W wrote:

I get so annoyed about the docs saying the SEs are not from the drug. I've suggested to my surgeon and to my onc that they come here and read what we are saying. THEY do not take the drug. THEY should read from here to learn what happens in real life - not what happens in a controlled study (most likely funded by the drug company).

DCIS, grade 3, 2009. Right mastectomy, tamoxifen for only 11 months.

Log in to post a reply

Nov 18, 2011 09:43AM dblh1227 wrote:

J9W - I agree.  At least I know that I am not the only one that has had this SE...........

Thanks for sharing your experience with Tamoxifen!  I hate worrying all the time.......it sure does take away from good times!

Heidi 

Nobody promised me a rose garden...but God gave me one anyway!!

Dx 5/24/2011, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 18, 2011 12:47PM cycle-path wrote:

Sheesh. EVERYONE knows that joint pain is one of the potential side effects of Tamoxifen. What a liar your doctor is! 

Estrogen deprivation from menopause alone, even without Tamox, can cause joint problems. Doesn't your doctor know how to read?

http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen 

http://www.medicalnewstoday.com/releases/30060.php 

http://holisticprimarycare.net/topics/topics-a-g/cancer-care/1086-vitamin-d-may-prevent-tamoxifen-associated-joint-problems 

I was going to apologize for speaking harshly but I changed my mind. These doctors really piss me off. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

Nov 18, 2011 01:21PM ProudMom_Wife wrote:

On a couple of other threads folks have posted the following.  It could be the generic form of Tamoxifen you are taking (they use different fillers).  See if you can change manufacturers and be sure to stay consistent.  It might be a trial and error thing.  If still no relief from the joint pain talk with your doctor about possibly getting the name brand instead of a generic.  I changed from Teva to Mylan and the joint pain is no longer there (might be a coincidence I know).  If I have issues, I will try another manufacturer, then talk to my oncologist about getting the real thing.

 http://www.ncbi.nlm.nih.gov/pubmed/20347307 

Abstract
INTRODUCTION:
Small joint arthralgia has been anecdotally reported for many years by women taking generic Tamoxifen (gT). However, it is a symptom that is absent from the side effect profile of the original Tamoxifen preparation Nolvadex. Our aim was to determine the prevalence of arthralgia in Tamoxifen users and to investigate whether it was associated with the excipient profile of the newer, generic formulations of Tamoxifen.
METHODS:
Women diagnosed with oestrogen receptor positive breast cancer between 2001 and 2005 were eligible. Those with new-onset arthralgia following commencement of gT were entered into a one year double crossover study. Patients were swapped from gT to Nolvadex for 6 months, the response noted, and then swapped back to gT for 6 months.
RESULTS:
Of 1020 new breast cancer patients, 918 (90%) were oestrogen receptor (OR) positive and were started on gT as part of their treatment. Of those, a total of 121 (13.2%) suffered with arthralgia. All 121 patients agreed to enter the study and swap treatment to Nolvadex for 6 months 114 patients (94.2%) had resolution of their arthralgia whilst on Nolvadex (p < 0.05).
CONCLUSION:
Our findings suggest that there is an arthralgia syndrome which is prevalent in women taking generic Tamoxifen preparations. Symptoms are abolished when Nolvadex is used instead of gT. This suggests that the excipient profiles are an important factor. We hypothesise that either the excipient profile of gT induces arthralgia, or an unknown excipient of Nolvadex has a protective effect. 

Dx 10/1/2010, IDC, 1cm, Stage IIa, Grade 2, 2/4 nodes, ER+/PR+, HER2-Surgery 11/17/2010 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Chemotherapy 01/05/2011 Adriamycin, Cytoxan, TaxolSurgery 04/25/2011 Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Radiation Therapy 05/16/2011 ExternalHormonal Therapy 07/01/2011 Tamoxifen
Log in to post a reply

Nov 18, 2011 06:42PM PLJ wrote:

I was stiff and a bit sore on Tamoxifen when I started it but with regular exercise, I am fine...no pain at all. Without that, I'd stiffen up.

Living is not about worrying how much time you have but deciding what to do with the time that you have been given. Choose well. Dx: May 3/11. 1 cm Mixed Mucinous Carcinoma inside 6 cm DCIS Stage 1, Grade 2, 0/1 Node, Oncotype 16, ER+/PR+, Her2-

Log in to post a reply

Nov 18, 2011 06:54PM bdavis wrote:

Oh Boy... Can't wait. I start next month.

Betsy... 1.9cm tumor, micromet in SN, ER/PR+ 98% .. Had my BMX and Reconstruction in NOLA

Dx 11/12/2010, IDC, 1cm, Stage IIa, Grade 2, 1/2 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 18, 2011 08:25PM heebie_jeebie wrote:

I just finished my first year on Tamoxifin this month and over the last month have noticed some problem joints - one knee and one elbow, but thought it was related to my work-outs.  Within the last week I feel like I am falling apart.  My neck, back, jaw and shouldars have also started hurting alot.  As I was watching TV just now, I suddenly remembered reading about bone pain as a possible side effect, so here I am, trying to see if that could be the root of my problem.  Of course it is friday and I can't call my oncologist til monday.

Dx 6/15/2010, IDC, 1cm, Stage I, Grade 2, 1/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 23, 2011 09:00PM bdavis wrote:

I was doing research today... haven't started yet.

Is it correct that Nolvadex is no longer offered since the patent ended in 2006? I have also read some women might switch to the brand name... I did a search at Medco, my online drug company, and Nolvadex doesn't even show up on a search, like it isn't made anymore.

Betsy... 1.9cm tumor, micromet in SN, ER/PR+ 98% .. Had my BMX and Reconstruction in NOLA

Dx 11/12/2010, IDC, 1cm, Stage IIa, Grade 2, 1/2 nodes, ER+/PR+, HER2-
Log in to post a reply

Dec 9, 2011 10:28PM kashree wrote:

I just started Tamoxifen about 3 weeks ago. So significant SEs yet. Although, my doc mentioned to me that joint pains will be one of the SEs.  It's funny cause he told me that if i don't get any SEs then that means the the drug is NOT working & they will need to put me on something else.  SO basically we MUST have SEs to prove that this drug is working?!?!?  So stupid IMO.  A friend who has been on Tamoxifen for almost 5 years now, she suggested regular exercise & stretches.  This helped her through the pain.  For hot flashes, try peppermint tea before bed. This was recommended by my Homeopathic doctor. And it works for me.

We gain the strenghts we have overcome...

Dx 8/3/2010, IDC, 1cm, Stage I, 0/4 nodes, ER+/PR-, HER2+
Log in to post a reply

Dec 9, 2011 11:43PM, edited Dec 9, 2011 11:49PM by cycle-path

kashree: I believe there was a study or something a few years ago that indicated that SE's show that Tamox is working, and no SEs means that it's not working. But that study was discredited.

There was a discussion about this here on BCO several months ago, but I haven't been able to find it. However, here's a web page that explains the situation. Be sure to read all the way to the end.

http://www.dslrf.org/breastcancer/content.asp?CATID=19&L2=4&L3=7&L4=0&PID=&sid=132&cid=1146 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

Dec 9, 2011 11:51PM DiDel wrote:

Heidi

I had terrible joint pain following chemopause. I did acupuncture and it was a miracle cure!! I did 5 sessions but by session 3 was about 80% better and by the 4th session 100% the 5th session was a "maintenance" session. My doctor also says joint pain is not a SE of T... BUT since it messes with your estrogen the lack of estrogen will cause joint pain...Uhhh DOC same thing as saying joint pain is a SE of T.

I hope you find some relief soon.

Diane

Log in to post a reply

Dec 10, 2011 11:02AM, edited Dec 10, 2011 11:38AM by vickilf

I just started Tamoxifen about 10 days ago. I ended up with severe breathing problems and hurt so bad I didn't want to go to work, depressed, can hardly move.  I did read a article that in some it caused asthma. I've decided not to take it. 

 I was one of many, TOLD I NEEDED  to take Lipitor, Mevacore, Zocor (statins for high cholestrol) not that high of cholestrol, but yet I needed to take it, I got major damage from these drugs and spent years and still am spending more years trying to heal from the side effects. My oncologist and I both think my CLL cancer was caused by taking these drugs. I see Tamoxifen can cause a stroke, ER - a worse breast cancer. What aabout HRT, I took this, I was told once again I needed to take this, now I have breast cancer, did HRT cause this too?  I know the choice is ours, what a decision to make.

Here's an article I found, you may want to read:

Tamoxifen: killer "cure"

by Wellness Warrior on May 24, 2010

The breast cancer drug Tamoxifen might well be marketed with the slogan, "If it doesn't kill you, it will cure you"- except that would be an overstatement. The truth is that it probably won't cure you of anything, but may very well kill you, as yet one more study makes clear. According to that study, just published in Cancer Research no less, long-term use of tamoxifen ups the risk of getting aggressive cancer in the other breast by 440 percent. In spite of this finding, researchers insist that women should keep taking the drug because, they say, the benefits outweigh the risks. Then again, they're not the ones at risk.

Tamoxifen has been used for over 25 years both to treat breast cancer, as well as to prevent it. Most breast cancers spread when exposed to estrogen, and since tamoxifen inhibits estrogen receptivity, it has been the standard treatment, although recently aromatase inhibitors, a new class of drugs, have taken precedence. Tamoxifen also has frequently been prescribed to high-risk women who don't have breast cancer as a prophylactic measure to stave off tumors. And, it's been used to treat osteoporosis, bipolar disorder, and prostrate cancer.

But problems with tamoxifen have been surfacing for years, and now this study shows the drug causes an even more deadly version of the disease it supposedly cures. The tumors negatively associated with tamoxifen use do not feed on estrogen, no drugs on the market have been effective in treating them, and the prognosis for cancers featuring these tumors is worse than for estrogen-dependent cancers.!

The study followed 1100 women aged 40-79 who received treatment for estrogen-receptive breast cancer between 1990 and 2005. Those who took tamoxifen were 60 percent less likely to develop estrogen-dependent breast cancer in the other breast compared to those not taking the drug. But those women who took the drug for more than five years, as already mentioned, had a hugely increased risk of developing estrogen-negative tumors. The study did not include women who took the drug long-term to prevent breast cancer in the first place. If it had included that group, the risk most likely would reflect far higher numbers.

So, you might conclude, since the drug does seem to provide significant short-term protection, you can safely take it for the recommended five years (that's the standard regimen) and then stop, thus reaping the benefits and avoiding the risks. Doctors point out that in the study, the overall numbers of women developing the aggressive breast cancers remained small (an interesting double standard as we'll discuss in a moment). The tumors appeared in only 14 of the 358 women treated for longer than five years. But, two troublesome key points make those arguments look lame. First, tamoxifen causes life-threatening problems other than breast cancers. Also, studies have found that while tamoxifen may prevent estrogen-dependent breast tumors, it does very little, if anything, to prolong life expectancy, at least when used as a cancer preventative. Let's examine these issues in a little more detail.

First, the other health problems associated with tamoxifen include blood clots, strokes, uterine cancer (about double the risk), ovarian cancer, liver cancer, gastrointestinal cancers, and cataracts among them, as well as the usual chemotherapy discomforts - nausea, vomiting, headaches and so on. "Any sort of treatment has risks and benefits, and the benefits for tamoxifen are very clear, particularly with respect to reducing mortality," says lead researcher Christopher Li, MD, of the Fred Hutchinson Cancer Research Center in Seattle. But are they? A huge study of 13,000 women by the National Cancer Institute back in the 1990's found that while tamoxifen did indeed cut "the incidence" of breast cancer by 30-50 percent in the high-risk group of women who took it as a preventative, seven years into the follow-up, women in the no-tamoxifen control group had fewer deaths from breast cancer than those in the tamoxifen group - marginally fewer, but fewer none-the-less.

And, as I've written before, those statistics touting the huge percentage reductions in new tumors from tamoxifen's effects do not hold up on closer inspection. About ten years ago, newspapers cited studies proving the efficacy of tamoxifen that consistently read something like "The National Cancer Institute's Breast Cancer Prevention Trial reported that there was a 49 percent decrease in the incidence of breast cancer in women who took tamoxifen for four to five years." That's stunning. If your doctor told you that using tamoxifen cut your chances of getting breast cancer by 49%, would there be any question in your mind on whether or not to use it? But if you look past the statistics, the truth is that according to the study, your odds of getting breast cancer without using tamoxifen were only 1.3%. With tamoxifen it dropped to .68%. And yes, that could be represented as a 49% difference between the two numbers. But the reality is we're talking about a difference of just 86 women out of 13,388, or just a little over one-half of one-percent (0.64%) in real terms.

If you already have breast cancer, it's your call whether or not to take on the risks tamoxifen brings. On the other hand, if you're going the mainstream medical route, you may want to consider the fact that aromatase inhibitors beat tamoxifen in terms of survival rates, plus they have far fewer side effects. The only proviso here is that these drugs work only for post-menopausal women, and they cost more than tamoxifen.

But if you're taking tamoxifen as a cancer preventative, you might want to think very carefully about the payoff versus the potential cost. And you might want to view the following statement made by Dr. Li regarding his recent study with a skeptical eye: "Certainly none of the data has suggested that we stop using tamoxifen or change the way we apply it."

Keep in mind that there are natural alternatives available that are at least as effective as tamoxifen - alternatives that not only strengthen your body and reduce your vulnerability to cancer and other deadly diseases but that have the added benefit of not triggering even more vicious diseases than those you seek to fend off. In fact, the self same Dr. Li just released the results of another study a few days ago that found that a simple change in diet can drop your risk of breast cancer by 40%. That makes it virtually as effective as tamoxifen, but with only beneficial side effects.

Dx 6/21/2011, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-