Tendonitis and Tamoxifen

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Tmh0921
Tmh0921 Member Posts: 714

I was Dx with IDC in 1999, went through treatment, and took Tamoxifen for 2.5 years with relatively few side effects before stopping to have a baby.

Last year, I was Dx with ADH in the same breast as my original BC Dx, and was put back on Tamoxifen. I've been on it for 15 months now and the side effects are increasing. I've has weight gain, night sweats, insomnia, forgetfulness, and digestive issues. All of these have been tolerable, but now I have a new side effect - tendonitis in my heels/ankles. It's PAINFUL.

Has anyone had tendonitis while on Tamoxifen,? If so, have you been able to treat it and get relief? This side effect just may the one that becomes a deal breaker. :(


Tracy

Comments

  • runor
    runor Member Posts: 1,798
    edited October 2017

    Hmmm. I am a lifelong sufferer of foot problems. I have pain in my HEELS and it was not caused by tamoxifen. It was caused by flat feet and when there is any change in my weight the problem gets worse.

    It is possible that your foot problems are not directly caused by tamoxifen. However, if you have gained weight, which changes your stance and distribution, that can cause foot problems if you are prone to them. Thus the tamoxifen is an indirect problem by making you gain weight, but not directly to blame in that maybe it is NOT what's causing your feet/ankles to hurt.

    The only way to know for sure is to have your feet looked at and see if you have pronated forefeet (flat feet) and the plantar fasciitis (heel / foot pain) that goes along with it.

    I have been on tamoxifen for almost 3 months now (I take half the dose, 10mg a day) and even half a dose has gifted me with hair loss, night sweats, hot flashes, totally stopped my periods, leg cramps in bed at night, and constipation. I do think the leg cramps have eased off, but the sweating day and night ... wow, in full force!

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    Just because my mind is in a different place - you haven't by any chance taken Cipro, have you?

    The first time I took it I got a painful lump on the sole of one foot. I suspected it was the problem after I looked up the symptom, but it wasn't confirmed by my MD. The second time gave me a widespread tendinitis (knees, wrists, fingers) and some rotator cuff damage.


  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2017

    Thank you for the replies

    Runor - I have an orthopedic appointment to discuss options, but my oncologist agrees that it's highly likely that Tamoxifen is the culprit. I'll see what the orthopedic doctor has to say.

    NotVeryBrave - I have taken Cipro one time years ago, but only a few doses. I had a severe allergic reaction and had to switch to another medication. I'll ask about this as well, when I see the Orthopedic

  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    in the same topic as NotVeryBrave- have you been on any antibiotics in the last couple months? Tendon issues are a side effect with certain classes of antibiotics

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2017

    Nope, no antibiotics. I haven't had to take an antibiotic in several years.

    I take the following:

    Tamoxifen 20mg

    Celexa 20mg

    Klonopin .25 - .50m

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2017

    I started (and stopped) Tamoxifen three times in four years. Each time I had issues with my Achilles' tendons. I was on AIs for ten months with much joint pain, then went back to T. When the Achilles issues started again,I thought, oh yeah I remember this.

  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    I know my feet, ankles and calves were really stiff in the mornings and my fingers swelled and ached when I was on tamoxifen. But as I used the joints/body partsit let up just to start over the next morning

  • Cathaden
    Cathaden Member Posts: 1
    edited February 2018

    I feel pretty certain Tamoxifen causes tendon problems. Perhaps it is the blocking Estrogen at sites, but I amsuspicious it is the drug itself. I was on Tamoxifen 20 mg.for 1.5 years. No real SE for 9 months, but then developed severe tendonitis in left elbow (no injury or overuse, as it my non-dominant arm). This lasted ~ 3 months, but eventually cleared. Then I started developing migrating joint pain and significant progression of OA in my hands and knees. The joint pain got so bad, especially in my thumbs, that I decided to experiment with stopping the Tamoxifen, as I was suspicious this was related. I received a medrol dose pack shortly after stopping Tamoxifen, which significantly improved my joint pain. I also started low dose naltrexone to help with inflammation. After a few months, joint pain and any tendonitis was 95% improved. 6 months after stopping Tamoxifen, I restarted it at half dose at the encouragement of my GP and medical Oncologist. One month after resuming Tamoxifen, I developed severe tendonitis in my right shoulder (no injury or overuse), which was diagnosed as shoulder impingement syndrome. I continued the Tamoxifen for another month, but the the shoulder pain has not cleared and any activity causes significant pain and flaring.This is pretty intolerable, as this is my dominant arm and makes it difficult even to put on my bra or other common activities. It is a quandary, as Tamoxifen has good evidence for preventing recurrence, but quality of life with the tendons problems are significant.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2018

    I agree that Tamoxifen possibly causes tendinitis. Last summer my shoulder started bugging me. Then in Nov by knee started up. Both have been chronic. I went to PT which helped a little bit. Then I finished Tamoxifen at the end of Jan. It's only been about 2 1/2 weeks and I already have significant improvement in both my knee and shoulder! I think that if you have a problem on Tamoxifen, it only makes it worse. I hate this drug....

  • gentianviolet
    gentianviolet Member Posts: 316
    edited February 2018

    I didn't respond well to Arimidex( I took it for 4 months), many knee issues that kept me up at night. Finally my onc put me on Tamoxifen and although I did feel less knee pain after about a month, T still gave me issues. The pain was better than Arimidex but by the time I had been on Tamoxifen for 3 years the pain in my left hip was extreme enough that it made me me limp. I stayed with it for another year and a half,,,,,,limping the whole time.....and finally quit Tamoxifen at four and a half years. My MO and my RO both told me that it was not the medicine but that I was getting older, (at that time I was about 73). By the time I was off of Tamoxifen for 3 months all the pain was gone. No pain at all, not anywhere. So I did have problems with Tamoxifen, tendonitis in right wrist and right ankle too, but I have met several women that have not had any issues. Weird, wonder why it is so painful to some and not others? Sending good thoughts to all, Barbara

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited February 2018

    I ended up seeing an orthopedist and after an exam and x-rays, etc. to confirm there wasn’t an injury he told me it was very likely the Tamoxifen. He said it’s not that uncommon in hormone blockers, and that the change in hormones caused by the medicine can impact tendons and ligaments.

    It’s very similar to the sciatic nerve issues I had while pregnant. My chiropractor told me hormone changes can cause loosening of ligaments which allows bones to shift and press on nerves.

    Anyway, I stabilized my ankle for a few weeks with a stiff brace and the tendinitis resolved. I’m grateful, not being able to walk without pain was going to be a deal breaker for me continuing Tamoxifen.

    Tracy

  • Dstaylor
    Dstaylor Member Posts: 1
    edited March 2018
    • I've been on Anastrazole for 1.5 year now and the joint pain is getting worse. I was okay with waking up stiff from my fingers to my ankles because it would work itself out and I knew that once I stopped for the day I would stiffen back up. Now my thum and wrist are a game changer and has been bothering me for about three months...and increasing. I knew it was the anatrazole but it has gotten so painful with using my right hand. I saw my family doctor and asked for an X-ray to see if arthritic changes or a fracture. Explained I was on anastrozole. X-ray came back with mild degenerative changes. WHAT! So I got on your website and found that it is tendinitis. Hopefully I'll be better equipped to discuss with my doctors. Thank you for the insight.
  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Dear Dstaylor,

    Welcome to the BCO community.We are sorry for what brings you here but glad that you reached out. We hope that you will stay active and find support and useful information from the shared experiences of our members. Please let us know if there is anything we can do to help you navigate the site. The MOds

  • ShockedAt48
    ShockedAt48 Member Posts: 138
    edited June 2018

    I have been on Tamoxifen for 10 months. Not too many side effects. Sometimes I have uterine pain. My knee started bothering me in March and has not gotten any better. I don’t think I injured it. X-ray results were normal. The other problem is my shoulder also hurts at times. I wonder if it’s the Tamoxifen. My gut feeling says it is. I was fine before I started taking the medicine.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited June 2018

    I've had a lot of different joint issues, but most of them started after taking Cipro for an infection. I think that changes with aging and perhaps perimenopause are some of the culprits as well.


  • Paco
    Paco Member Posts: 208
    edited June 2018

    Tmh0921

    I have been taking Tamoxifen for about 6 weeks and I've noticed an consistent, dull ache in my Plantar's fascia, the tendons under my left foot. Now, I've suffered from Plantar's fasciitis in the past so I can't attribute it 100% to the Tamoxifen but the timing is interesting. I run 3/4 times a week and do weight bearing exercises the other 3 times a week and I do believe that has helped mitigate joint issues that might or might not crop up as a result of the therapy.

    My husband, also a runner and avid weight lifter, got pneumonia a few years back and was prescribed ciprofloxacin as an antibiotic. He was laid up for WEEKS after that with intense pain in his calves and ankles. It took him about 3 months to fully recover from that. Crazy how meds can affect a body, in unintended ways.

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