Tamoxifen and long term joint pain
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Well to top it all off, I fell two weeks ago on my way to teach aerobics. I fell on black ice in the parking lot and fractured my arm. I am sick of dealing with this bone crap! I have to stay on these meds....my son was only 4 when I was diagnosed. I do this for him....I lost a parent when I was young and don't want my son to grow up without me. I find I do a little better when I take turmeric, omega 3's and a few other vitamins. I am going to talk to my doctors again about the pain though. It is infringing on my life.0 -
mdg, how long were you on the Tamoxifen before they did a bone density test? I have been on it a year and have not had one. I requested one at my last visit, so it will be set up then, but that's not until May. I take Calcium and Vitamin D to hopefully help with the bones. I have hip pain, and have for the past year. I have attributed it to running, but maybe it's the Tamoxifen contributing. I also developed carpal tunnel and cubital tunnel since starting Tamoxifen, and had to have them surgically corrected. I may make it 5 years, but I can say with 100% certainty that I am NOT on the 10 year plan!
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I stopped Tamoxifen based on severe hives that appeared at about 6 weeks. After a 6 week hiatus, I went on Exemestane. At about 3 months, I noticed pain in my left knee. I attributed it to perhaps twisting my knee but it was worse with time rather than healing. About 10 days into the sprained knee sensation, I flew on two consecutive 1.5 hour flights. I arrived at the 2nd airport in search of parties I was to meet - stiffness turned to pain. Sleep alluded me - normal over the counter pain meds barely helped. I regretted not taking my Crocs on the trip - my 2 pairs of comfy walking shoes were restricting with all the swelling. By the end of the week, I opted for a wheelchair in the airport. I could barely hobble and transitioning from standing to seated and vice versa was very painful. My PCP said it was not a blood clot. I stopped the meds and now, 8 weeks later, there is minor pain thorough the day unless I stand for a few hours.Then I start to hobble and my back tires from the compensation. Family peripherally in medical fields argue that it could not be a hormone blocker causing this. But I was well on my way back to feeling good after the rads and the Tamox & Exe sent me in the opposite direction. If I can't walk, transition, carry even a dinner plate and a glass to the table while on these drugs, what is the point. The rate at which my ability to walk was being impacted, I could be bedridden by now if I had not removed myself from the drugs. I was an active disaster recovery volunteer before the drugs - I was framing a house the same week rads ended. The surgery and rads didn't slow me down much. Next steps - exercise, better diet, a no to breast reduction on the other breast and regular mammograms (that is nothing new.)
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I was on tamoxifen for 2 years before I had a dexa. I only got a dexa scan because they wanted to switch me to an AI because I had my ovaries out.
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I was on tamoxifen for almost 20 months. MO wanted me to take it for 2 years, then switch. But the joint pain got too bad, I literally could not function. So I'm switching to Arimidex. I asked, isn't that one even more notorious for joint pain and she said yes, but everyone is different, you just never know, some have bad SEs from one drug and do fine on another, so it's worth a try. I'm also taking a 3 week vacation in between and really hope to be feeling a little better soon.
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I am a five year survivor, status post chemo, double mastectomy and five years of Tamoxifen. I just taking it two weeks ago and my joints are killing me. I did not have this pain while I was taking it. My hot flashes are also worse. I never expected to feel worse after stopping it. Hoping that time will improve this situation. Am glad I saw your post... Wishing all of you relief...
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Hi maggier10, welcome to the Breastcancer.org discussion boards. We hope you find it to be a place of support and helpful information!
We're sorry you're experiencing this pain and hot flashes, and hope that you start feeling better soon... Just as a suggestion, you may want to post or start your own thread under the Pain forum, designed to share important questions and provide support to others experiencing breast cancer and treatment-related pain. Let us know if you need help doing this.
Best,
The Mods
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I have been off Tamoxifen for over a year now and not only has the joint pain not gone away, it has spread to more joints. I see my primary and my onc next week and I'll see if there's anything I can do or anyone else I need to see. My onc doesn't really believe in side effects so hopefully my primary will have some ideas.
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My onc is sending me to a Rheumatologist. I know what is happening to my body is the tamoxifen and it is debilitating. I met with my RO and they said it is definitely the tamoxifen. I asked about medical marijuana and they felt that would be a good avenue to explore. It is legal here in AZ with a medical ID card. I am so close to quitting tamoxifen and I have only completed 1 out of 10 years.
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I've been on Tamoxifen for a year, seemingly without problems. But then my fingers started triggering with very severe pain. I didn't even think about Tamoxifen being the cause until another woman from my cancer support group told me that was a common side effect. I started out with such a minor diagnosis-- stage 0, grade 3 DCIS-- and didn't expect all the issues that have resulted from treatment. I have PTSD from the wire procedure, lymphedema and cording from rads, and now my hands are useless. I can no longer play the violin or piano. Can barely lift a cup of coffee. I'm going off the Tamoxifen, and don't care if I get another tumor. I can't live like this. The idea of dying is looking better and better.0
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I am sorry you have had such bad side effects from the Tamoxifen and are disheartened from adding this new one to your other issues. I just started Tamoxifen a month ago and so far not problems. Being aware of potential problems that have been discussed so far gives me a heads up to be more diligent of my body and how it feels. My myofascial release therapist talks frequently to me about staying present in my body and feel the intricacies of all the sensations I experience. In doing so I can pick up early minor changes that are both pleasant and unpleasant and not stuffing down the unpleasant ones. I hope that now that you are off Tamoxifen those side effects diminish and you can again enjoy playing your musical instruments.
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I know how you feel. On top of my depression, confusion, inability to verbally express myself due to the words not coming out my mouth, suicidal thoughts, from the tamixifen, now I'm experiencing bad lower back pain, arthritis in my hands to the point it hurts to hold a brush, my hands...I need my hands. If that's not enuf now my eyes have 15% vision loss. My primary eye doctor took a visual field test and says she doesn't believe the results, which makes no damn sense bcuz she is the one to tell me I lost 15% of my vision. She refers me to another doctor that tells me it's my age not the fact that I have been on tamoxifen for 17 months.becuz of all these side effects I had to apply for SSD. But I'm a little worried about getting approved because of my doctors not acknowledging my side effects.
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I took Tamixifen daily for 5 years, and ended 5 years ago. Yes. Joint pain in toes feet ankles knees hips lower back fingers wrists elbows. Also frequent horrifying muscle cramps in feet/legs. When i was still taking tamoxifen the cramps would start in my feet and run all the way up to my neck but now they stay where they started. My doctor claims there are no long-term side-effects from tamoxifen. I say she is quite wrong.
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I’ve probably sickened everyone by writing about my experience with tamox SEs but here I go again....my feet felt like they were beaten with a baseball bat, achy hands and wrists, leg spasms and cramps that were straight out of a horror movie...once watched my calf muscle flip backwards. All that until I started weight training. All gone now. I find squats and lunges a must. If I take a break from the gym it all creeps back. I’ve also noticed a marked difference in hot flashes and energy level. Cardio alone didn’t cut it. Can’t recommend weight bearing lower body strength training enough! Made tamox so much easier to take
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Hi Everyone! I have been on Tamoxifen for about six months. The SE's seem to change as The big T builds up in my system. The self-showering version of hot flashes has come and gone. I was (note the past 😬 tense)literally crippled when getting out of bed for a while. I spent a lot of nights where I wasn't able to sleep- reading every thread for a solution to the muscle/bone pain. Somewhere here on BC.org, I found where others were recommending regular Claritin-(not the Claritin D) for leg pain. I figured it couldn't hurt, so I started the 12 Hr redi-tab each morning. I was shocked that it greatly reduced the pain. I had even gone out and bought 2 pr. of those newer memory foam slip on tennis type shoes. Now I don't have the pain and my seasonal allergies are taken care of too. I will say the leg pain was actually worse for me on Femara than the big T. I've tended to forget that much of these SE's could also be a SE of Extreme lack of hormones too!
I know several doctors who tend to say none of our SE's are caused by Tomoxifen. Luckily my MO was not one of them. She is really trying to work with me on SE's so I'll stay the course on Tamoxifen. Well, my TV just went off so I suppose I should be sleeping! Nite All
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I'm glad you've had fewer SEs through weight bearing exercises. I also lift weights three times a week and another three days a week I run at least 6 miles. I've been on Tamoxifen for 6 weeks and I do feel a slight ache in my plantar's fascia, it could just be coincidental. No other joint pain that I haven't chalked up to occasional exercise-related soreness.
I'm a believer. Yoga would probably work well for SE sufferers as well. It's hard to establish a routine of working out but it is essential to try!
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Paco - I wasn't lifting or exercising beyond walking (slowly) for the first 6-9 months of tamox, so I got the full brunt of SEs approx. 5 weeks in. Lemme' tell ya....I'm so glad you're active and please do keep up the great work on your regime, because for some the difference is crazy! Yoga is awesome! I poo-poo'd it until I tried a class and man-oh-man what a workout! I went in at the insistence of a friend and thinking it would be a cakewalk compared to weights and cardio. I couldn't have been more wrong, it uses so much core strength/balance. I loved it so much I try to attend a weekly class after weights in place of cardio for the day. You're so right....it is essential to try, it can make such a difference!
Last thing, the plantar fasc., funny because I had trouble a few weeks back and couldn't figure out why. No injury or impact etc... Then I took a good look at my workout shoes only to discover the heels were a bit worn over. I bought a new pair and used drugstore Dr. Scholls inserts - the pain diminished overnight. I was thankful it wasn't the tamox. I'm thinking your plantar might have something to do with shoes or the need for shoe inserts to absorb the impact from running? Runners do tend to get this. Might be worth a shot?
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Egads, I have been seriously contemplating extending my Tuesday / Thursday 5:30 AM strength class (I do Body Pump and I'm addicted to it) with the 6:30 AM yoga class. Your testimonial was the encouragement I needed! Yes, I'm thinking I need an insert for my shoes. I've struggled with tendon problems in my feet and ankles in the past so it could just be overuse, worn out shoes, or age (I know, I'm not getting any younger, go figure!)
It can be hard to decipher the origin of random aches and pains so I'm trying to consciously choose not to chalk them all up to the drug. Largely because I have every intention of continuing for the 5 or 10 years so we gotta start to get along, me and friend Tamox!
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Paco, I hope inserts work for you as they did for me! Let me know how it goes for you. I completely agree that all avenues should be taken before simply loading it on the meds...I’ve been guilty of bad mouthing tamox many times. I like your ‘friend’ statement...much more positive! Impressive work out you have going, kudos. And yes it’s soooo addictive. I get withdrawals when I have to skip a day! Not to mention the SEs creeping back if I’m on vacation and miss a week or two. The gym is my plasma lol!
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Can I just say I love my onc? Saw him yesterday and let him know that in addition to the hot flushes, brain fog, and exhaustion, my hands, elbows and ankles are very achy. My knuckles have swelled to the point I cannot wear my rings. And I just tore my meniscus warming up for a run (tamoxifen related— don't know. Had no knee issues until after oophorectomy in November). And now my other knee is cranky.
So my onc was very empathetic and said let's try and make some changes so we can keep you on the tamoxifen. He said to start by taking it M-S and skip sundays. He put me on low dose Effexor as well, saying these two changes may help to “smoothe out the edges" of the side effects. I previously took the tamoxifen for a month or so, felt crappy, went off for a couple weeks, repeat. He said for sure the joint issues are tamoxifen related. I will see him in a month to gauge the response. If the response is not what I need we will look at other options.
It is so nice to have a doctor that listens to and thinks about what I have to say, and then works to find a solution. And also I appreciate that he did in fact acknowledge that the joint issues are tamoxifen related. On a side note he also said it was ok for my ob-gyn to write a script for an estrogen cream/product, which I am now finding I need since the oophorectomy.
I wish you all relief from the joint and other issues
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I was instructed to take Claritin 24 hour tablet once a day and it has done wounders for the fingers and hips. Decreases the pain
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Hello Breast Cancer Sisters, I haven’t been on here in years. I am now a 20 year survivor.(IDC Stage1B, Grade1, No Node Involvement, ERT+ PRT+ Pos, HER2- Neg) My treatment was bilateral mastectomy and hormone therapy. In the past 20 years I have had 7 reconstruction surgeries. My last one being four years ago and already they have ruptured. One of them is halfway in my armpit. I need to make an appointment with the plastic surgeon. The hormone therapy was Tamoxifen. Last time I posted on here was back in 2014. My issues were that I was having severe joint pain from tamoxifen. I was on it for three years. I was also getting Lupron shots to suppress my ovaries, but that didn’t work, so I eventually had my ovaries removed. I was 34 years old when I was first diagnosed. So I was pre-menopausal. I eventually had to stop taking the tamoxifen. It was making me feel like I was 80 years old. Every joint and muscle in my body hurt from head to toe. I couldn’t even open my car door because of the pain in my hands. So fast forward 20 years to now I am 54 years old and my joint pain has only gotten worse. I blame the tamoxifen and the lack of estrogen. I’ve been in pain management for the past 15 years. I was wondering if there’s anybody out there that has long-term joint pain from tamoxifen.
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Hi hotmesseryn
I took Tamoxifen for 5 years and finished Feb 2024. I still have joint pain so not as long as you. I keep hoping the joint pain will disappear. I noticed tonight that one of my fingers middle joint not only hurts but looks deformed. Yikes, is it just swelling as I don’t remember injuring the finger. I will get this checked out. Sorry to hear you have had joint pain for so long. Going with out estrogen really sucks.
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