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

I started Tamoxifen in Sept. I get pains on the back of my knees and on my knees. I have a cold this weekend so I'm guessing this is the reason my left knee is really hurting. I have also had some pain in my elbows and ankles. The pain is usually not bad. I have not been exercising because I was afraid I would damage a tendon, ligament, or my acl. I forg

H Reid,

I feel exactly the same way, my whole body hurts. i am curious too if the symptoms go away if tamox was stopped.

I am 48 - joint pain in knees but don't know if it is the Tamox or just getting older that is the culprit.  But the SE come and go - hot flashes for one month, then gone  but now back with a vengence!  Strike about 10 times per day.  Leg cramps for one month, then gone.  But the weight gain!!! I went for my annual chat my my primary care doc - I am overweight bordering on obese according to my BMI.  Made me want to eat a bar of chocolate when I hear the news.

I 50 and I too have joint pain.   I've been on Tamoxifen since 2010.  At first I had terrible headaches but I wasn't sure if that was coming off chemo or the Tamoxifen or the Zometa.

Once the headaches stopped I felt pretty good so when asked I always replied that I had no side effects from Tamoxifen.

Then I started having neck, shoulder and jaw pain (same side as cancer so that freaked me out) so the ONC took me off Zometa (bone building drug).  I also started seeing a massage therapist and got rid of my heavy shoulder bag and it got a lot better.

Now I have elbow (right), knee (right) and hip aches (first right now left).  Not really pain but more like a funny cold/burning ache.

Sometimes I wake up with it and sometimes I feel it later in the day when I'm tired.  It never wakes me up in the night but if I think about it it's there.

I have been using ADVIL a lot and that seems to help but now I'm off that because I'm having some fat grafting surgery and the PS wants me off it.  ONC once told me that if the ache goes away with ADVIL it's not cancer.  Not sure if I believe him but it does give hope...

I've had a number of scans since the fall (for bad blood work) and there is something on my right hip but drs think it's a benign ostemoma.  I see my ONC on Thursday for a follow up from the latest PET scan.

So we shall see what he has to say....

Marie

I'm so fed up with the terrible SE that i'm taking a break from it. I have horrible joint pain and my back has gone again. My back just goes and i can't do anything for a week.

Also have weight gain and i eat very little. Very bloated all over and my tummy is very painful and swollen. Also the lining of my womb is thick and waiting to see specialist.

Hot flushes that make me sweat like a pig. My eye sight is blurred from chemo and got worse.

Mood swings were bad and couldn't go out.

So i'm going to stop for a month and see how i feel.

I had to stop tamox at the end of April due to issues posted above, and then realized that my increasing blurry vision was all of a sudden better.  I had put it down to turning 50 this year, but come to find out, tamoxifen can cause reversible and some times, irreversible eye issues.  My oncologist, after I reported to her this last se, called me on a Saturday morning to ask how my vision was, and to urge me to get my eyes examed right away.  I was very nervous, I mean, your vision is like, everything, and especially for a graphic designer / marketing person!  I saw my eye doctor, who did an extremely thorough exam and said whatever damage was being caused was reversing because I had stopped it.  Needless to say, I am never going back on it at all.  I follow up with my onc next month and we will discuss this, as I am sure she wants me to go on something else (I am done).

Hello Ladies. I posted a year ago about this. The pain in my feet is now so bad I have difficult walking barefoot. Any body else with similar symptoms? It feels like very bad bruising on the joints at the ball of my foot.

I am really glad I found this discussion! I recently turned 55 and I started Apo-Tamoxifen when I was 53 ( about 15 months on it) I initially had a lot of anxiety and adrenalin rushes with the hot sweaty flashes. The nights are the worst. I still have a lot of flashed but the Anxiety is better. Sadly, I have noticed a gradual increase in joint pain, particularly hips knees and feet for me. I echo what so many here have said. I  feel like much older than I did when this all started. I was fairly active BC. I enjoyed running and even ran a half marathon the month before I was diagnosed. I can barely walk these days let alone run. I too feel like my joints are swollen, especially my knees. I just got my prescription refilled and was told that It is now Teva-Tamoxifen. I am hoping that the change  might alleviate some of my symptoms? The plan is for me to switch to Famera in about a year. I am afraid that things will just get worse on that drug  My cancer was 100% + for Estrogen and 75%+ for Progesterone, plus, I opted not to take Chemo ,so stopping the drugs is not an option for me. My MO also dismissed the Tamoxifen as the cause of my pain and stiffness but I personally think the drug does lead to these symptoms due of it estrogen blocking role. After reading your posts, I feel somehow less discouraged I am not alone with this and  I am too young to feel this darned old! I plan to keep working on the exercise especially some gentle Yoga practice, as sounds like it is helping many of you.   Cheers!

When I am home I drag myself to the health club to exercise.When we travel I swim. it  keeps my joints more mobile.When I get lazy I suffer even more.

I was 47 at diagnosis and was perimenopausal with hot flashes and sexual difficulties already starting. I developed persistent knee and neck pains while on tamoxifen, and hand and hip pains  that came and went, as well as stiffness if I stayed in one position too long.  I also noticed that on long drives, I would get an annoying ache in my right buttock.

I took a couple of short breaks from tamoxifen during the 3 years I was on it. Neck ache  improved with 1st break, stiffness surprisingly got even worse for a short while with 2nd break.  When I quit for good in Feb 2011, not much difference in aches.  I hadn't had a period in almost 2 yrs at that point. I waited a few months, then started aromasin, which gave me foot pain that made walking difficult, and overall dryness,  so I quit that after 2 months. Was afraid it would speed up the overall aging process!   I'm 53 now.  It's been a year and a half since I've been on any medication and I still get bouts of arthritic type pains in feet that come and go, but no longer any hand or hip pain.  Find that I have to be more careful at the gym, can pull something much more easily than a few years ago and then the pain from that seems to stay for weeks. When I do 3-4 mile hikes with my walking group, or spend the entire work day on my feet, I always start to feel some type of foot pain by the end.  I have kept my lower back limber with yoga, and weight maintained with lots of stair climbing. And since I recently started using more hand weights and stopped using the treadmill, right now nothing aches!

 Much of what I was previously feeling could possibly be attributed to the aging process. And having gone through menopause while on tamoxifen, it's  hard to say which was the culprit. Things that definitely have improved for sure though are: no more right buttock ache on long drives, no more neck ache, less knee pain going down the stairs, less hot flashes, and better immunity.  Had some horrible colds and kept getting eye irritations (burning and chalazion bumps) while on tamoxifen. 

I also agree with turmeric being helpful for reducing aches and pains. My Onc had suggested it to me.

Hello all,

I have been on tamoxifen for almost 18 months. I definitely have hip pain - it started over the summer in my right hip. After about a month I did have an MRI which showed nothing (thank God).  Then that hip slowly got better and it moved to my other hip! I am back exercising now and find that it is making all of the difference in the world.  I find if I am not exercising I get very stiff and sore.  I am 41 years old and sure it is from the tamoxifen (as is my doctor).

I also have problems with my feet (extreme pain when I stand for too long, when exercising, when I ski). On that I am not sure whether it's the tamoxifen or some permanent damage from the chemo (I did have some neuropathy during treatment) but either way it's definitely new.

When I first started the tamoxifen I had a couple of other symptoms - hot flashes and leg cramps.  The hot flashes have completely disappeared and the leg cramps are much less frequent. 

I have had 5 periods in the 18 months since I started tamoxifen.

I'm trying to focus on exercise because I'm not willing to think of stopping the tamoxifen and I would love to feel more like my age!

Rose

Tammy

No advice here just a big cyber hug. The Tamoxafin is very hard on us. I know since being on it I have had tinnitus, worsening hot flashes and just feel not so great a lot of the time. Plus I am very stiff and have to exercise  every day or I really pay for it. I hope you find some relief somehow as it sounds like your qol is not so great. Perhaps there is a natural supplement that you can take. It looks like your BC was quite early and low grade. There must be some options for you. 

Hugs. 

Hi Pink Heart,

My oncotype score was 17, so I was just on the fence with chemo.  My onco recommended chemo and I went with it.  I do have to take it for 10 years now.  My doc does not want me to take a break but I'm going to anyway.  I'm just not telling her!  I'm choosing quality of life too.  I can't continue to live this way.  If the cancer does come back, I'll deal with it then.  But for now, I just can't handle the SEs.

luci

I have had hip and joint stiffness since taking Tamoxafin and I had a clean ct scan to rule out any other issues. It has subsided significantly in the last month. Exercise and yoga really help. 

Jennie

I have the same issues. I find that lots of stretching and yoga helps. Also I have been using essential oils like peppermint on my hip and that has helped a lot.