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

Scarthome,

What does your MO think. Have they offered suggestions. How many years did MO prescribe tamix?  10?

I hope you can find relief from your pain one way or another. 

Susan -  I hope you get some answers!   The pain you're having just sounds awful. I don't know what your diagnosis is but for me,  there is only so much I will be willing to put up with.   I hope that the vitamin D and glucosamine are the magic cure!   

Hang in there and keep us posted! 

thanks Dawn. Had lumpectomy 2011 left side stage 1, ER+ PR+, her-, had radiation and cmf chemo "light" due to #20 on this test I couldn't remeber the name of. On tamoxifen for almost two years now. Going to have to he some answers soon I can't do this anymore it's too painful. I'll keep you posted. thanks.

You too!   :-)

Anyone have any suggestions for this pain?   I tried doubling my glucosamine, didn't seem to do anything.  Now I'm trying Claritin.  It's supposed to help the bone/joint pain from chemo/Neulasta, so worth a try?  Allergy season is almost here anyway.  

Hello all!

New to this thread, so I will tell as much about me as I can and try to make it brief. I am 42 and was diagnosed last year with Stage 2B IDC, ER+, PR+, HER+, neo-adj chemo (AC/Taxol and Herceptin), lumpectomy, sentinel node biopsy, radiation, Herceptin and Tamoxifen. I started on Tamoxifen approximately 5 weeks ago. This past week I have been experiencing the most awkward sensation in my hand, much like arthritis but a tad more painful. Thank goodness it's not my dominant hand. I find it difficult to grab things and my hand has very little strength, and I still have residual mild neuropathy in my ring finger and pinky. I am glad to see that I am not nuts and unfortunately not the only one having joint pains. So, now what to do about this? I see my Onc in a few weeks see if I can hold out until then. Glad I found this board.

I turned 40 the day I was diagnosed (happy birthday to me!) and after my chemo and I started taking tamoxifen the day of my mastectomy and node removal.  Other than hot flashes (yay) I have noticed an aching pain in my knees and shoulders since I started tamoxifen. Oddly, the shoulder on the side I had my surgery doesn't hurt much at all, and the joint pain often is more than the pain I have remaining from surgery. I was wondering if it was the tamoxifen, and after reading this I am definitely suspicious.

I am hoping once I get the all clear to be more active after my surgery they will fade, as it could be leftover SE from my taxotere, but I am concerned that I might be in for 5 years of joint pain. I sincerely hope not. Before chemo I was very fit and active and although I am definitely not in shape anymore after my chemo, I only put on about 10 Lb during all this so I am hopeful to be able to bounce back and be more active again soon. I really hope this doesn't get in the way of things. I'd hate to no longer be able to run or hike anymore. I am going to start taking suppliments of curcumin, Vitamin B12, Vitamin D and glucosamine as I've heard they help with joint pain (and may help heal up from my upcoming radiation treatments). Crossing my fingers.

hello ladies,

Here is what's happenigng to me and thought i'll share and get some suggestions. 

i've been having stiff joints and pains on my arms that have been steadily increasing since January /February when I first noticed it. At first I thought I was  just getting sore from the long walks and exercises I've been doing. The most irritating is the shooting pain on my right wrist which started as pain right away back in February. I was having PT and lymph therapy then, not due to lymphedema but due to tissue cording and tightness on my left side which were limiting my range of movement then. I told my therapists and oncologist about the sore joints and painful wrists. My therapists were able to get me back to climbing and yoga even though I get shooting pain from the wrist when I do certain movements like just lifting the index finger, holding a pen or scratching. Oncologist said and believes it still the lasting effect of Taxotere and will eventually go away. In March I was told to stop Tamoxifen just to rule it out and the pain persists so now I'm back to Tamoxifen. I also had bone density scan prior to starting Tamoxifen in February and was found with borderline Osteopenia on the left hip. So I was prescribed with vit D 50,000 IU D2 (after reading some of the entries here re: D2 and D3, I will ask if I can have the D3) to take 1 every 7 days for 16 weeks. Those weeks have passed and I was re - prescribed for another 16 weeks. Guess what? Pain still there. Then I noticed around April that might my knees are still at times and weaker. I hike almost every weekend and at one point I rolled onto my side when I was high stepping. Another time I ended rolling on my back in the middle of Best Buy aisle when I cannot get up from crouching when I was looking at something on a lower shelf. I feel weaker too and dragging myself in my long hikes but still I go to build up my strength and endurance again. I haven't resumed climbing nor yoga since my reconstructive surgery on 4/16/14 but I continue to walk either treadmill or around the neighborhood for at least 2 miles and 7 to 9 mile hikes. I do light arm exercises and even with 2 lb dumbbell or even without, my arms shake and are painful, now up to both shoulders, elbows and still right wrist. I was told to take Glucomsamine Chondroitin supplements during my last onco visit in April and been taking it 3x/day since. Pain persists and although I can move I find it limits me due to the pain. I consider myself active BC (before cancer) doing push ups, pull ups, hiking, climbing and yoga. Now I don't know if I can do anything with my arms. I've been off work (I'm a dentist) since the diagnosis and I don't know if I can have use of my hands and how long this will last. Friends also suggest massaging with essential oils which worked for them or those with arthritis. Nope it doesn't work, neither is taking Ibuprofen or even Vicodin.

I have an onco visit on 6/23/14 and will definitely ask their opinion about vit D3 and if Tamoxifen really benefits me. I am ER+ 29% and PR+ 67%. They told me I'll be on Tamoxifen for about a year then switch to AI since I'm pre-menopausal. I'm turning 48 at the end of the month.

Hi, new to this thread, I'm 51 and  I've been on Tamoxifen for 2 years with out much problem but suddenly developed bad pain in both knees. Very active (farm and riding) and it did not seem to be related to exercise at all. After one week I took a double dose of my forgotten D3, calcium, magnesium supplement and that night it was manageable. Oncol says yes it is the Tamoxifen, that sometimes it will have effect like this even after so much time and that I fluked the right treatment - Vit D supplements and to keep moving - exercise is good. Knees burn now rather than ache and at least I can sleep (in between hot flushes at least!!)

I have ben taking Tamoxifen for three years.  I am 51 years old and I am experiencing joint pain.  I did not feel it as much the first two years, but this last year I definitely feel it.  I exercise regularly, it has not stopped me but I had to modify my routine.  My hands and wrists hurt when I do pushups or dips, so I do not  do them anymore.

I recently say a rheumatologist and she did an ultrasound of my hands and wrists and saw no damage.  She thinks it is caused by the Tamoxifen, on the positive side, she explained that Tamoxifen does not damage the joints like rheumatoid arthritis, so when you stop taking it, the pain should go away.   I hope so...

o yes.....lots of joint pain....I'm also on iv once a month treatments of zometa which causes these bone flares as well.

Update, I guess it was not the Tamoxifen causing the joint pain.  I have been diagnosed with Rheumatoid Arthritis.  This showed in the blood tests,  I am early stage so there is no joint damage yet.  Funny thing is that the wrist pain went away so I am back to doing pushups, dips,..  I plan to continue exercising for now.

I have not  started treatment yet.  Who knows what side effects those meds will cause.  Overall, I am just grateful to find out early. 

Jennie,  we just do not know what is around the corner waiting for us.   Right now, I feel great, especially since my wrist stop bothering me.  I modified my computer workstation, that seemed to help.  I will find out soon know what drugs, if any, the rheumatologist will recommend. 

In my case, I wish Tamoxifen was the culprit.  

Currently 47, been taking tamoxifen for two years.  Thanks to all of you for making me feel sane again.  

I was always active, ran, biked, kayaked.  Once started taking the tamoxifen, started getting horrible muscle cramps. They come out of nowhere, and simply prevent me from using whatever muscle it is (and it could be anywhere).  My Doctor told me that was completely unrelated to the tamoxifen, and I was probably just dehydrated.  I was not happy with that response.  The cramps continue, though I have found that mineral supplements can provide some relief.  But the JOINT PAIN is what is killing me.  It started in earnest a few months ago.  I intially just thought it was fact that I was aging and running too much. But the pain doesn't go away if I rest.  The pain doesn't seem related to exertion at all. And, much of the pain goes away while I am active. As another said, the slightest exertion will result in extreme joint pain in that area that lasts for a week or ten days.  The pain is not related to physical activity anyway; it migrates around my body.  And, yes, as many of you said, its much much worse in the morning.  I'm often scared to walk down the stairs when I awake, because I'm not sure my legs will carry me to the bottom.  Once I get moving, I feel much better.  

Has anyone had any luck getting a medical provider to take this issue seriously?  If I get a response at my next appointment similar to the one that she provided for the muscle cramps, I'm going doctor shopping. 

Tangandchris, imhave been on tamoxifen since may, and I do,get the traveling muscle and joint pain.  What alternative do,we have?  I manage it through staying active and getting enough rest.  It doesn't make it go away completely, but it keeps it tolerable.

The docs all seem to have a knee-jerk reaction to automatically deny anything is a SE of whatever they are giving you!  For sure all of mine did.  

My MO gave me the same song & dance about "tamox doesn't cause joint pain" but about 2 minutes of research here and elsewhere was enough to see that it does, quite often.  I knew there was nothing else different, anyway.  Once it got so bad I was basically crippled, suddenly the MO changed her tune. Made me angry, but at least she's offering suggestions now.