Advertisement

Tamoxifen and joint pain

Tamoxifen and joint pain

Postby detfields » Wed Jul 16, 2008 8:00 am

I am a 42yoa male and had two bouts of breast cancer. The second time I went through chemo and an now on Tamoxifen for a couple months. For the past couple weeks I have been experiencing bone pain. Pretty much all over my body but always near the end of a bone (joint). The only exception would be the back of the skull, where I have had pain several times. My question is can this be leftover pain from chemo (my last treatment was 5 months ago) or is it from the tamoxifen? My worst fear is that it could be the cancer has spread to my bones. But I wouldn't think it would be all over my body so quick.
detfields
 
Posts: 2
Joined: Wed Jul 16, 2008 12:01 am

Tamoxifen and joint pain

Postby Apricotjo » Mon Sep 01, 2008 11:17 pm

Hi,
I've been on Tamoxifen for just over 6 months. Apart from the increased surge of hot flushes which is seemingly very common, I'd like to add my experience of joint pain/discomfort.
A year ago before the onset of breast cancer treatment (I've had everything from surgery,chemo,radio,herceptin (on going) and tamoxifen, I was very fit and active.

When I started taking tamoxifen I felt tired but at the time I put that down to inactiveness (been off work from June 07 to end of Feb 08)so I didn't take much notice.

However as time goes on I'm noticing how "creaky" my joints are in my hips, elbows and knees. I went on a walking holiday in July and had to take Iboprufen every day as the pain in my left knee was causing me too much pain.

My main point I'd like to put to the forum which I realise is immensely tricky and delicate not to mention personal, to answer is this: After 5 years of taking Tamoxifen will the joint pain subside or go away? Will the drug cause irrepairable damage? I'm thinking of stopping Tamoxifen altogether as I don't want to be a cripple when I'm older. OK so I survive cancer and remain overweight and unfit because I can't run, go to aerobics, walk up hills and even swimming puts some strain on my knees though of course not as bad. On top of this I know I could take joint care capsules, Evening Primose, Red Clover. But it all costs money - plus paying for Tamoxifen.

I have a friend who refused Tamoxifen when she had breast cancer in 1990 - she's still here!! Also there are folk that have taken everything and still had the cancer return.
So it's a tricky one. I do believe quality of life is really important but it's difficult to make this decision!!!
Apricotjo
 
Posts: 1
Joined: Mon Sep 01, 2008 12:01 am
Location: UK

Tamoxifen and joint pain

Postby carolB » Fri Sep 12, 2008 10:56 am

I'm so glad to have found this site. This morning I discussed with my oncologist coming off tamoxifen after four and a half years. I can't stand the joint, bone, arthritic pain any more. I was feeling pretty vulnerable having taken the decision, because I know I'll always wonder if the disease will return, but having read all your experiences here I know I have made the right choice.
carolB
 
Posts: 1
Joined: Fri Sep 12, 2008 12:01 am
Location: britain

Tamoxifen and joint pain

Postby Choirmom0333 » Fri Sep 19, 2008 12:16 pm

I noticed recently that Tamoxifen is available in both 20 mg and 10 mg doses. Has anyone tried reducing your dosage to 10 mg and/or taking it every other day, etc.?

Knee pain drove me to my GP this past week. X-ray revealed mild arthritis but nothing to account for the extreme pain. I'm going to go off Tamoxifen for one month and see if my knee improves.
Choirmom0333
 
Posts: 2
Joined: Fri Apr 18, 2008 12:01 am
Location: Garland, TX USA

Tamoxifen and joint pain

Postby Morgun » Wed Sep 24, 2008 9:19 am

Hi
Just wanted to make a comment on Tamoxaphen and joint/leg pain. I have been on Tamox for 3 years and also have pain in my hips, legs and sometimes leg and foot cramps at night. The only relief I get is when I am more active, I find walking , hiking and even just sitting on the floor doing some yoga stretches seems to help.If I stop doing any of these things there are days its hard to get out of bed in the morning. Also much more tired,but after talking to a friend who went through all this a few yrs before me told me that she never realized how tired she was on Tamoxaphen until she stopped taking it. So I'm just hoping after my two more yrs on it , my energy will pick up again. Good Luck to All of you Deb
Morgun
 
Posts: 1
Joined: Wed Sep 24, 2008 12:01 am
Location: Cabada

Tamoxifen and joint pain

Postby lisa1972 » Fri Oct 17, 2008 6:26 am

I have been on Tamoxifen for about a year and the joint pain is driving me crazy.I felt like an idiot last weekend when my toes hurt so bad,it drove me to tears.If I bend down,I have to have help getting back up.My hands and hips hurt too.I am embarrased to tell my oncologist since he says that Tamoxifen or Femara cause no pain.I took Femara for about 6 months and still had the same issues.I know that people think I am crazy for crying cause my toes hurt so bad.I guess I will get a cane or wheelchair,walking is torture sometimes.I have a pain doctor and I take Oxycontin 60 mg 3x daily,Oxycodone 15 ng and Dilaudid PRN and none of them touch the pain in my toes.I have to take it for the rest of my life so I am hoping to find some relief somehow.
lisa1972
 
Posts: 1
Joined: Fri Oct 17, 2008 12:01 am
Location: dayton tn

Tamoxifen and joint pain

Postby Kim in Colorado » Thu Oct 30, 2008 1:34 pm

I have been on Tamoxifen for over 7 months now and have regular hot flashes and mild aches in my legs/joints. I was pre-menopausal when I had chemo and now with Tamoxifen, it appears that I am menopausal. One thing I have found that helps the leg aches is regular exercise. Even just walking around the block seems to help the aches and stretch out the legs. Keep the faith that you will get through this and never give up.
Kim in Colorado
 
Posts: 1
Joined: Thu Oct 30, 2008 12:01 am
Location: Loveland, CO 80537

Re: Tamoxifen and joint pain

Postby lindabotcho1 » Sat Dec 26, 2009 9:48 pm

I to had Chemotherapy including Adriamycin, Cytoxin and Taxol, followed by bi-lateral lumpectomy and 34 radiation treatments each breast. They also removed my ovaries because of the Estrogen Receptor factor. I had bad body aches during the chemo which improved when a few days after ending the treatments. Then I was prescrived Arimadex, which cause sever back, hand, leg and foot pain. That was discontinued and I was put on Femara, with the same result. After that I was put on Tamoxifen, and about 6 months later I began having elbow, lower back, ankle and arch pain. My oncologist said that Tamoxifen does not cause this, and wants me to see a Rheumatologist to check my rheumatic blood levels. I think it is the Tamoxifen. When I get up in the morning, I can barly walk. Once I start moving around, I loosen up and am able to do a little over 3 miles on the treadmill, but as soon as I sit for any length of time, I stiffen up.
I was glad that I came across the posts at this sight. At least I know that I'm not alone.......This has been a very long road.
I am also having a terrible time loosing weight. I eat sensible meals, am monitoring my calories and trimmed them down to 1200-1300 calories per day and religiously working out, with NO RESULTS. This is extremely frustrating. I gained, initially, and have at least stopped the cycle, but would really like to see some results.
Is anyone else having this problem?
lindabotcho1
 
Posts: 1
Joined: Sat Dec 26, 2009 9:27 pm

Re: Tamoxifen and joint pain

Postby rondafranklin » Tue Feb 09, 2010 8:50 pm

I am 2 years and 3 months out from diagnosis and have been on Tamoxifen for 1 1/2 years. I have 6 months to go on it and then I will be switched to Arimidex or Femara for the remaining 3 years. Within the first 2 weeks on Tamoxifen, my wrist was hurting. Now 1 1/2 years later, I feel 20 years older than I am. When I get out of bed in the morning, just placing my feet on the floor is painful. It gets better throughout the day as I get going but then by the end of the day, my knees, hips and legs are so sore, I can't stand it. I have found that taking Glucosamine Chondroitin is helpful WHEN I take it; haven't developed the habit of taking it every day; you'd think I would. I do feel that this is contributed by the Tamoxifen. I take a very small dose of Effexor to combat the hot flashes that the Tamoxifen induces. I do find when I take in very little to NO caffeine, the hot flashes rare. The less caffeine and alcohol, the fewer hot flashes. The more exercise, the fewer hot flashes. I do drink a fair amount of milk and take extra calcium and Vitamin D. Also, ladies, don't forget to get your bone density/DEXA scan tests every couple of years.
rondafranklin
 
Posts: 2
Joined: Tue Feb 09, 2010 8:40 pm

Re: Tamoxifen and joint pain

Postby KarenB » Fri Mar 19, 2010 3:18 pm

I found this post by Googling "Coming Off Tamoxifen". Wednesday was the end of my five years being on Tamoxifen (for DCIS). I am hoping some of the nasty side effects diminish over time. I believe Tamoxifen bumped me into menopause. Although it is not confirmed that I am actually in menopause (because I just got my period after not having it for 13 months!) But when I called my oncologist complaining about fatigue and joint pain, she said it wasn't the Tamoxifen but menopause symptoms. I then Googled "menopause symptoms" and there were about 30 and everything bad I was experiencing was on the list. The worst for me was low energy and feeling depressed and not wanting or having the energy to do all the things I was used to doing. I was always active and exercising but I choose naps over exercising now. I did experience joint pain as well after starting Tamoxifen. It started in my hips and then went to my elbow. I ended up with a rotator cuff tear so I also had shoulder surgery. Prior to that I was diagnosed with arthritis in my shoulder and neck. Then the most recent pain was in my knees, and I thought I would not be able to exercise which I felt I really needed to be able to do b/c it helped relieve feelings of depression. I started taking Osteo Bi-Flex faithfully every day and the joint pain went away. I have zero joint pain now. I had to call my oncologist to ask if I could take it and they said I could. The only time I get pain now is in my shoulder or neck and it is usually after I have not excercised; I think stiffness from the arthritis. I was also told by my general practitioner that I have restless leg syndrome which is sensations in your legs that cause you to need to move them. I also have experienced leg cramping at night which is very scary because Tamoxifen can cause blood clots and I was always fearing what the Tamoxifen was doing to me. Although I was diagnosed with DCIS and did not have to have chemo or radiation, the DCIS was multi-centric (widespread throughout my breast), so I had to have a simple mastectomy. The Tamoxifen was prescribed for me to prevent cancer from going into my other breast, which apparently is riskier than taking it to treat breast cancer. I read a lot about Tamoxifen when I was told by my oncologist that she wanted me to take it. It scared me so much that I asked my breast surgeon if I could have a bilateral mastectomy so I wouldn't have to take the Tamoxifen. She said I wasn't high risk enough and insurance would not cover it. I have prayed these past five years that the Tamoxifen doesn't harm me. Hopefully, it has not. I read somewhere that it takes 3 months to get out of your system. I am so excited to be off of it and I'm hoping many of the side effects will at least diminish. I hope my post helps someone. I feel like I have whined about my symptoms/side effects for the last five years to all my friends, so to see others on Tamoxifen saying the same things I have been saying makes me feel like I'm not alone. Oh, one other thing that happened right after I started Tamoxifen was that my hair became very wavy. I never had wavy hair - always poker straight (and I'm 52). I wonder if it will go back to being straight? Hope not. I wish the best of luck to everyone going through breast cancer challenges, including having to tolerate Tamoxifen side effects. God's Grace & Peace to all of you. Karen
KarenB
 
Posts: 1
Joined: Fri Mar 19, 2010 2:39 pm

Re: Tamoxifen and joint pain

Postby Laurie L » Tue Mar 30, 2010 11:04 am

Hi my name is Laurie also, Ive been dx. with Breast cancer. Had surgery and radiation treatments also, was placed on Tamoxifen. With a blood thinner to prevent blood clots.Im at risk for blood clots. I already suffered from 2 forms of arthritis one is crippling me the other causes constant pain. When adding the tamoxifen to the mix my pain increased ten fold I didnt think that was possible.Joint pain, headaches, muscle cramps, fatigue, insomnia. Not sure what my Oncologist is going to do at this point. Just know that I have to stop taking it.
Laurie L
 
Posts: 1
Joined: Tue Mar 30, 2010 10:30 am

Re: Tamoxifen and joint pain

Postby amy » Sun Apr 25, 2010 2:49 am

As with most of you I too have been experiencing a great deal of joint and muscle pain through taking Tamoxifen. Last year I took myself off the drug for three months and felt considerably better. One of the side effects stated with the drug is an occurance of high levels of calcium in the blood.This can lead to similar symptoms that are being discussed along with excessive tiredness, something else I am struggling with. Has anyone had calcium levels looked at in regard of these symptoms?
amy
 
Posts: 1
Joined: Sun Apr 25, 2010 2:40 am

Previous

Return to Breast Cancer Diagnosis

cron