Are you 55 or younger on Tamoxifen, & having NEW joint pain?

Well, I *was* on Tamoxifen and experienced sudden severe joint pain, particularly in my lower back, knees, and hips. It was like a combination of the joint pain I experienced while taking Taxol (legs) and Neulasta (lower back), and it was horrid. I had just turned 39 when I began taking Tamoxifen.

However, due to severe neurological problems that coincided with my starting Tamox, my doctors took me off Tamoxifen and started me on Lupron, planning to add an AI once my estradiol level is low enough. My joint pain seems to be getting better with physical therapy (and no Tamoxifen, of course).

I think you will find a lot of women here who have experienced the same thing. From what I have heard, the AIs will have the same side effects as far as joint issues - enjoying my last few months without those...

I too am strongly ER/PR positive (95-100%) and stopping Tamoxifen was not a decision I made lightly. 

I still take Oxycontin and Soma (muscle relaxer) at night when the pain is the worst, but am hoping PT will alleviate the need for this very soon. Quite honestly, they don't help that much with the pain, but do make me drowsy.

I am curious to know why your doctor is still insisting on Tamox despite your ovarian ablation - have you asked about trying an AI instead? My original plan was both Lupron or Oopherectomy and Tamox, so my MO apparently felt the same way - I would like to be more educated about why doctors recommend this. Is it because we are so strongly ER/PR+? Our age? Tamoxifen's efficacy vs. AIs? Please let me know if you know the answers to these questions, thank you!

I was 50 when I started tamoxifen and I could not get out of bed and walk straight away...had to ease into it and limp to the bathroom.  I could not walk as fast (my 17 years older husband would outwalk me--this from someone who used to jog, yoga, lift weights ).  I sobbed at my oncologist's office and they did nothing.  Oh, and I was taking aspirin.

Oh yeah, I'm havign loads and loads of aches and pains and I'm 32.  The doctor gave me a bone scan just to make sure and it came back clean. Phew.  The Dr. Agreed it could be tamoxifen related. I'm also getting massive migraines, which again is tamoxifen related.  It's doign a lot of crazy thing s to my body! it sucks.

I've been on the Tamox a few months now, and I'm starting to see some pain.  I'm 40.  I find it worst when I get up after sitting for a while...heading upstairs to bed at night after a long day and then some time on the couch...I move like I"m 80.  But most days, during the day, I look pretty mobile.    Recently my writst  has been having shooting pains...weird, eh?  

I started taking Tamoxifen in 2008.  I definitely had new joint pain, to the point where I could no longer cross my legs.  I lost a great deal of weight during the first year I was on the Tamoxifen, and still had worsening pain. 

I started taking a yoga class geared for cancer survivors.  The slow, gentle stretching and movement helped. 

I started taking glucosomine and chondroitin and co-q 10 twice a day.  That also helped.  When I tried cutting back to once a day, the aches started up again.

I am now 3 3/4 years into taking Tamoxifen, and plan to continue for another year and a 1/4.  I am also mostly pain free, even walking a couple of miles a day most days.

Find the combination of exercise and supplements and drugs that works for you.  It may be different than what works for someone else, but the search is worth the time and effort.

Reading all of these responses makes me wonder how many of us have had the bone scan/PET/whatever to rule out mets for this type of pain? All of us? Personally, I'm glad to have the peace of mind, but wondering WHY our oncologists are so reluctant to admit that hip/leg/knee pain is clearly a common side effect of Tamoxifen?!

I had severe joint & bone pain from Tamoxifen & AI's.  I discovered that a number of them, especially the generics are made using lactose as a filler.  As soon as I switched over to a tamoxifen without lactose, most (not all) of my pain disappeared (I'm almost scared to post this, don't want to jinx it)   I previously had no pain or arthritis & was diagnosed at 50. 

I'm 27 and when I was taking it, I felt like I had Carpel tunnel in my wrist and my ankles hurt so bad. I stopped taking it and my wrist is 100% better!!

Wow...I am learning a lot and I'm glad you started this thread!

I've been on tamoxifen for many months. I've also had aggressive chemo and rads, surgery that removed my L breast, part of my chest wall, 15 nodes and about 1.5 inches of a nerve under my armpit....but I never connected my pain to Tamoxifen!

I'm 40, have intense pain in my left wrist, moderate pain at my tailbone, terrible cramping in my feet, and an almost painful tingling that comes and goes all day every day with my left arm. The nerve removal has caused numbness to my upper arm that has been there since the surgery...These all seem to be getting worse.

PlantLover - I'm on the A Team ( Arimidex) and old, so this isn't a comment on your post - I have not a DOUBT it's the Tamoxifen, from all the young women in the support group I share with in the off line world:

Best suggestions I've heard from Massage therapist who spoke to us for hips esp. is very VERY VERY gentle stretchiing of the muscles around the whole area, to keep joint as mobile as possible. Even helps me with A & being old.

Also, ACUPUNCTURE has done wonders to reduce inflammation in the joints where I was experiencing most pain, KNEES.  If ruthbru, and clair were on this thread ( Arimidex SE's) I can hear them praising movement, exercise - but as one of the laziest people I know, wouldn't be honest of me to say that...even tho I KNOW it's TRUE!  Gentle to begin with...always gentle....

All the tamoxifen on the market now is generic.  I just asked the pharmacy if they would stock APO for me, the Dr doesn't need to specify but you may have to call different pharmacies.  Here in British Columbia we get our tamoxifen from the hospital (it is free & considered part of our treatment) so women here just have to get their MO to check if their local hospital carries it. 

PlantLover~ 

I have been through hell and back over the past 10 years with several heart attacks, bc diagnosis, double mastectomy, recon, lymph node removal w/ extreme, refractory axillary webbing, etc.  I am way too familiar with side effects from medications from heart meds to breast cancer.  

For me, the tamoxifen reared it's ugly head 5 days after I started it with the SEVERE HIP AND KNEE PAIN that took me down, down, down.  I walked in pain literally dragging/sliding my feet.  It was 100% the tamoxifen.  I am not back on it yet -- hoping to get through the pain from post-mastectomy pain (7 months ago) and some plastic surgery pain that an egotistical PS sits tight lipped about for some strange reason.

I have a topic I started about tamoxifen and arimidex therapy which announces the new studies that show that ~50% of breast cancer patients are not adherent/taking these meds because the side effects are unbearable.

Despite these highly credible studies, oncologists (mine included) are now prescribing these drugs to BC patients for TEN years versus FIVE. 

I have not resumed taking Tamoxifen.  My med onc reduced the dose in half.  He has no comment when asked about the new studies of bc patients being nonadherent.  Once I get off the oxycontin (from surgery complications), and am feeling good again, I will try the tamox again.  BTW, the oxy didn't even touch the hip and join pain from Tamox.  My onc was dead silent about that, too when I told him.  He didn't bother to bring up NSAIDs because I am supposed to avoid them per my cardiologist. 

If that intense pain comes back when I start it again - I will stop it and simply my live with a good quality of life.  My grade (1) and oncotype test scores (11) are low, I had mastectomy and radiation, so I'll take my chances.  The tamox doesn't guarantee it won't come back anyway.

Also, both Tamox and Arimidex are not good for the heart per studies.  So I had two med oncs disagreeing over which would be "least" detrimental to my heart.  I need my heart to keep ticking to stay alive, so another reason why I'm not jumping to take hormone therapy. 

I cannot understand why the "new" recommendation is to prescribe these meds for TEN years. 

Are the med oncs going to "recall" all the other BC patients who only took it for FIVE years?

Blessings to all BC sisters!

I emailed TEVA for info on their drug, this is their response. It gives the list of ingredients at the bottom of the message. 
This email is in response to your request for information about Tamoxifen Citrate Tablets USP manufactured for Teva Pharmaceuticals USA. You stated that you are experiencing many more side effects since switching to Teva's Tamoxifen Citrate Tablets USP, and is there a difference between Tamoxifen Citrate Tablets with the imprint of barr/904 and Tamoxifen Citrate Tablets USP with the imprint of 93/782.  Please note that Barr's Tamoxifen Citrate Tablets, imprint barr/904 have been divested to Watson Pharmaceuticals, please contact them regarding the formulation of their product.  Teva's Tamoxifen Citrate Tablets imprint 93/782 has the same active ingredient, Tamoxifen Citrate, however it has different inactive ingredients.  I have included below a listing of the inactive ingredients contained in Teva's Tamoxifen Citrate Tablets USP.  Information regarding your side effects has been forwarded to our Pharmacovigilance Department for reporting purposes.

Each tablet contains the following inactive ingredients: croscarmellose sodium, hypromellose, lactose (monohydrate), magnesium stearate, polyethylene glycol 400, povidone, corn starch, and titanium dioxide.

I hope this information is of help to you.  Thank you for your interest in Teva Pharmaceuticals USA.

After I got this email I researched the Watson brand and the ingredients in theirs is:Croscarmellose sodium, lactose monohydreate, magnesium stearate, microcrystalline cellulose, pregelantinized starch.

Nolvadex the original drug had, carboxymethycellulose calcium, magnesium sterate, mannitol, and starch.

I am 55, I started on Watson brand Tamox when I was 52 switched to Femara after 11 months. On Femara for 15 months, went back to Tamox Teva brand for 6 months 10mg. I was worse on the Teva brand, however I was still dealing with the Femara's side effects.

PinkHeart

I'm so sorry to read about your SE's too.  I just wish I could put into words how much I have been helped - KNEES especially - ANKLES TOO...by acupuncture.  Also going gluten free.

The extension beyond 5 years - as it was explained to me by my docs at Dana Farber, is cuz it seems to be doing so much GOOD preventing reoccurence of bc.  Bottom line.  I know too that the non-compliance  because of SE's is something that is a REAL CONCERN.  There is a Clinical Trial ( think it's a Phase III, but not sure) for women who have COMPLETED at least 4 years on an AI: it divides the participants into two groups, one group takes Femara every day for 5 years, the other group takes Femara eveyday for NINE MONTHS (9) of the year, with 3 months off (no AI)

Expect it will be a long, long time before we get data on this, but it's encouraging - know the issue of compliance is one of GREAT CONCERN, as well as QOL for those of us taking an AI.