Tamoxifen and long term joint pain
Hello BC Sister's,
I am 5 years bc cancer free. I was stage 2 w/ no node involvement had bi-mastectomies w/ reconstruction. No chemo, but I took Tamoxifen for 3 years. I have been off Tamoxifen for 2 years, and had my ovaries removed as I was premenopausal. I was 32 when I was dx. That little ugly pill has ruined my life. Along with the hot flashes and mood swing I developed severe joint pain. I have been off the Tamoxifen for about 3 years, I still have the joint pain from head to toe. It is now worse then it was while I was taking Tamox. I have been to several drs. they're are saying I have osteoartritis. I am now going to pain management as I have to take Norco along with 4 other meds so I can get out of bed everyday. I can't work, my fingers hurt so bad I cant even grip my tooth brush. Is anyone else out there going through this or know of anyone that is?
Any advice, responses, etc....would be greatly appreciated. I can't handle this pain anymore
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Sorry - I can't answer your questions as I am only on Tamox for the last 7 months, I do have joint and muscle pain, and moodiness too but as I say I am activly taking Tamox.
I just wanted to say I'm sorry you are going through this kind of pain 5 years on - you should be able to enjoy the feeling of being 5 years cancer free rather than having this constant reminder of it. I hope you get some good information from some of the other ladies on these forums.
What else can I say - try and stay strong!
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I have taken Tamoxifen for 6months, so can't speak from long term experience. I have had few SE, but have noticed some mild stiffness in my hands upon awakening. The dr. also says this is more characterstic of arithtic pain.
I am guessing that having your ovaries out, and thus snapping off the estrogen switch, probably contributes a great deal to hot flashes and joint pain. If you determine low estrogen levels are the culprit, you'd have to be really careful about addressing that. Good luck--hope you are able to find some relief.
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It's most likely the lack of estrogen, not the tamoxifen, that is causing the arthritic symptoms.I took tamoxifen for 5 years; I had to have a TAH/BSO after 1.5 years, but then continued to take the tamox for the remaining 3.5 years. I used to blame my SEs (hot flashes, insomnia, and achiness) on the tamoxifen, but then realized I really didn't have any significant SEs until after my surgery/loss of the ovaries, so it was more likely the combination of tamox and the lack of estrogen. But they didn't go away when I went off tamox, so that again pointed to the lack of estrogen as the culprit. Estrogen lubricates the joints, and when it is lacking, arthritic stiffness and pain can occur. I tried glucosamine, I've tried tylenol arthritis pain formula, and now I'm trying omega 3 fish oil. Nothing has really helped so far. My stiffness and achiness is especially bad first thing in the am, in my right hand and both legs, especially my feet. It seems to subside after I get up and moving around; but I definitely feel like 82 sometimes instead of 52 ! Still hoping the doctor will come up with something else that will work.
Anne
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The thing that has helped me get through the muscle pain is a hot tub! I find that I can move my muscles and do exercised in the spa. Out of the spa I cannot even point my toes without pain. I think that it adds tone to my muscles. I also find that the more active I am the more the pain increases, but I am not giving in! Keep on moving, and soak in hot tub or bath. I was at my girlfirends soaking so much my husband bought me one and it it the best investment we have made in my health. I would have to get off of tamoxifin or be a cripple without it. I am on Tamoxifin because the stronger drugs they wanted me on were even worse. It was my third try of meds. I had chemo, radiation, and bi-lateral. The hot tub also helps my scar tissue loosen up.
Hang in there and keep on keeing on!
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I have been on Tamoxifen for 2 years. My hip joints are so stiff I feel 85 instead of 55. I have other friends who are having the same aches and pains even though they are on Femara. I thought I was having some other kind of problem until we all started talking about it. Seems to be the lack of Estrogen but there must be something that can help us!
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I have been on Tamox for 2 years this Jan my minor arthritus has spread to knees and hips now aswell.Feet and hands are also bad.I walklike an old lady.I take meloxicam daily and add an Alleve when I get a bad flare up.What are you ladies doing for the pain?
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Holy Cow...this is the best website - being able to talk with others who are in the same boat is great. I stopped taking tamoxifen about a month ago - was on it for 11 months. I stopped because of bone pain and joint pain. I find it VERY interesting how many of us who are on T have also been told we now have arthritis - how many of us had it before that darn pill came into our lives? I see my onc tomorrow - she'll be surprised that I'm not taking drugs any more. I had DCIS, stage 0, grade 3 - had a mastectemy to get rid of it (family history of bc). So, here's my thought, I was told to take T in order to reduce the odds of me getting bc on the other girl.....so, I'm taking a drug that hurts me to keep me from maybe getting something. Doesn't make sense to me. I'm going to suggest that we do a mammo and mri every six months instead. And, I'm going to exercise.
Look at this info I found:
Beth DuPree, M.D., F.A.C.S.: Joanne, many patients do not want to risk the side effects of tamoxifen or other anti-estrogen agents. There are no naturally occurring substances that have specific anti-estrogen effects but the best way for you to decrease the circulating estrogen in your body is to become as physically healthy as you possibly can by decreasing your body fat content through a healthy diet, regular exercise, and strength training. What many people do not realize is that the drug tamoxifen and the second generation anti-estrogen medications such as Arimidex (chemical name: anastrozole) and Femara (chemical name: letrozole) work by decreasing the effective circulating estrogen in the body. Our natural means of decreasing the circulating estrogen in our body can come by (1) the removal of the ovaries surgically, or (2) the lack of function of the ovaries through menopause and (3) the method that requires the most intense work is by obtaining a physically fit body that is low in fat content and high in muscle content. In other words, a lean physique, thereby decreasing the body's ability to make estradiol through the conversion of fats to estrogen in the adrenal glands.
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I am sorry to say that I was on Tamoxifen for 5 years. I finished long ago and have since had terrible osteoarthritis. I've had 3 surgeries - a neck fusion, a hip replacement and shoulder surgery. It was not until I talked to a doctor a few days ago that I learned my problems are all due to the Tamoxifen. No one ever warned me. I fear that my joints will all deteriorate one at a time.
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This scares the crap outta me! I'm having bad joint pain on tamoxifen but they say it will go away when you stop taking it. Was counting on that. Now it may be permanent? F that! MO is getting an earful let me tell you!
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I just took my last Tamoxifen last night, have been on it for 11 months, switching to Femara on Monday. I managed my SE from tamoxifen with glucosamine/chondroitden, turmeric, ASA, all anti inflammatory meds. I also take Omega-3 supps, CoQ10, magnesium, Vit D and E, and spirulina. I hope by having all these on board already I won't have a rough time with the Femara. Best of luck to you all!
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Hello BC Sister's!!
Here is an update from my 2010 post. I still have joint pain from head to toe. I'm still going to pain management. I feel the exact same way I did when I last posted in 2010. The difference is the injuries and surgeries I've had since then.I broke my leg stepping out of a boat in Lake Havasu, which caused a spiral fracture to my left fib. I fractured 2 bones in my foot while putting on a pair of jeans. I broke my knee cap and I've had surgery for a torn meniscus in my knee. This has all happened within the last 4 years. I will be 44 on the 19th and before all of that I have never broken a bone in my body. My bones are totally brittle now. And yes I blame Tamoxifen! That stupid drug continuest to ruin my quality of life. If I would of known then what I know now....I would have never taken that it. Mind you after taking it for 4 years and being off of it for 6 years now. Everything is just getting worse! What am I going to be like when I'm 54, when being 44 feels like I'm 94!?!? Ugh!!!
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I am sad to hear what all of you have endured with Tamoxifen but also vindicated at the same time. I have been on Tamoxifen for 3 years come next week. I have had so many SE that I am very serious about stopping. The joint pain started for me this summer and I thought it was because I was getting back into running and my body needed to adjust but I can sit for a movie and be so stiff my knees, hips and low back have to be oiled like the TinMan.
Last year Onc told me if I got off it may or may not help but that we could stop the Tamoxifen for 3 mos. and then get back on and maybe we would know what was Tamoxifen. Gyno said would not work that way. So I stayed on. So now I am at my limit want to get off to stop the roller coaster of SE and Gyno says it wont matter - the process has been started my body does not know that menopause symptoms were induced by Tamox and the process cannot be reversed.
I tell you this because now that I read what is being said about joint pain I think it will be the same, once the process starts the body does not know what started the joint pain but it cannot be reversed, not with adding back estrogren and I am ER+PR+.
I wish I would have been given better info before taking it to begin with.
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I am being switched from Anastrzole to Tamoxifen as of today, because of Extreame joint pain and increased hot flashes but reading the post's above it sounds like I am just trading Hell for the fire😣😡
Shary
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wow, this is so depressing... I have only been on Tamoxifen for a couple of months. But my Gyn mentioned switching from Tamoxifen to an AI since I am menopausal and he thinks Tamoxofen has to many SE. But I read that AI's have horrible side effects too. Joint and Muscle pain..I am only 46 and a personal trainer, I worry about the side effects and my QOL on these drugs, the long term effects of these drugs are down right scary.
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I have been on tamoxifen since may, and I had joint pain in my knees and hips. That has gone and now I have it in my left shoulder, neck area. Is it normal for it to move around like that?
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I am on exemestane (aromasin) and that is supposedly the one with the least side effects! I can barely walk after 14 months of this crap. I am absolutely exhausted from this pain. It wakes me up in the middle of the night with leg cramps and foot cramps, something I never had before this (except the very rare charley horse like everyone else) but that is the least of it. The joint pain, brain fog and exhaustion are just ridiculous! Why do we do this?
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smrlvr - I have joint pain from tamoxifen and it does move around. The stiffness, like after sitting still too long, is pretty constant, and there's always a dull ache everywhere, but the really sharp pains do come & go. Might be the right shoulder this week, left hip next week, no rhyme or reason to it.
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I'm on exemestane, I hate going to bed at night because my hip starts aching and when I wake up my hands fingers hurt. Not to mention the constant ringing in one ear. Obviously our bodies are not happy with these drugs. I am about 3 years into treatment and I will be extremely unhappy if the side effects don't let up after I stop this stuff in 2 years.I never had any pain before this crap!
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So far so good, I took my first Tamoxifen yesterday and my SE'S have not been to bad for the last 24 hours, but I tell you the fatigue I have had this last month has made me feel like I was back on chemo again. Just when I was starting to feel almost like myself again they give you this stuff and it's all down hill again.😝
Shary
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Well reading this thread is of great concern to me. I'm supposed to start Tamoxifen soon and I had read previously about achey joints being a problem. The thing is, I already have experienced achey joints for most of my life as a part of PMS symptoms. Also my body is still having issues from the chemo, just achey and tired.I'm fearful of taking a hormone blocker, I don't want to deal with SE's like this for 5 years. Not to mention how it could affect my mood and sex life. ugg, sometimes we just can't win with this dreaded disease!!
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I was on exemestane (Aromasin) for 3 months last year and was so stiff that I could not use my hands to crochet or walk without being stooped over and I could not sleep without meds. My MO switched me to Tamoxifen and I have been on it for a year now. The joint pain and the foot/leg cramps are bad, but not as bad as they were with Aromasin. The pain does seem to "move around" from my ankles, knees, hips, lower back and hands. I am finally able to sleep without meds but the aching is worse at the end of the day and at night. I can only lay on my back - when I lay on my sides my hips ache. My MO recommended Magnesium for the foot and leg cramps and started me on Celebrex for the joint pain - haven't been on it long enough to know if it's going to work but anything is worth a try...My mom developed mets when she stopped her Tamoxifen and passed away the week I was diagnosed so with that family history and the strong ER/PR+ pathology I don't feel I can stop the Tamoxifen so I'm just looking for ways to cope with the SE's...(((Hugs))) and good luck to my Tamoxifen sisters:)
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I stopped Tamoxifen in January because of depression and severe joint pain. I thought it would go away as it's been 6 months. I can't bend my right knee or walk down the steps in the morning or after I've been sitting. My knees are so painful. When I try to walk at a brisk pace my hips pop, my knees and ankles hurt. Now my right pointer finger feels arthritic too. Not even sure who to tell or see. My oncologist is not a believer in side effects. At least you guys have the same thing going on and I'm not alone. The brain fog hasn't really disappeared either. The only thing that's gotten better is my weight. I've finally started to deflate!
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I too am having the joint pain, while I did have a little joint pain in my knees and hips before Tami and I am post menopausal, it was nothing like what I am dealing with now. I have been on Tami since July 8th (approx 7 weeks) and SE have started, hot flashes, brain fog, and PAIN!!! I have pain in my left ankle and heel area that can be unbearable at times, I hobble around like I'm 90 and I just turned 54. I see my Dr. in October and I was telling my husband the other day that I don't think I can make it 5 years on this drug.0 -
I don't know if tamoxifen is to blame for my achy joints or just the fact that I'm post menopausal, but I haven't had a period for about 3 years and finished 3 years of tamoxifen at about the same time. If I were still premenopausal, I would expect the aches and pains of tamoxifen to have cleared up by now. But I really believe that it's menopause that is the biggest culprit here. I did notice that many of you on this forum have had oophorectomies, and I can't help but wonder if that may be a major contributor to your symptoms. While I was on tamoxifen, I did have pains that moved around to different areas, and most of those pains are gone, but now for past couple of years, I've had new pains in entirely different areas, that come and go. I sometimes wonder if I suffered any long term effects from tamoxifen, but I'll never really know.
I am determined to keep up with my exercise, but yoga is getting harder and harder for me to do., with the deterioration of my joints that I feel getting worse by the year. While on tamoxifen, I used tumeric for pain and found it to gradually start to work after several days. Haven't used it in awhile, but plan on starting up again.4ë
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Just skimmed through this thread and wanted to add my story. I was started on Femara almost 3 months ago and have suffered from joint pain in both of my hands almost immediately upon starting it. So much that it has stopped me from being able to do my job which is a dental assistant. Definitely need my hands for that. My MO stopped the Femara yesterday and wants me to start on Tamoxifen one week after my exchange surgery which is in one week. After reading the stories I am questioning his decision. Sounds like the Tamoxifen is going to do the same thing or worse! I don't understand his thinking and I don't want to be on a roller coaster ride of meds. Need to be able to do my job. He says at this point I am technically disabled. Not where I want to be. Need that pay check!
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I think it is different for everyone...I have been on tamoxifen for 3 months with no real side effect. (only hot flashes) I have read of others switching drugs because of side effects and having better results. My Dr mentioned switching to an AI but since I am tolerating Tamoxifen well I hate to make the switch.
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I'm taking Tamoxifen and I be in pain from head to toe and my Dr says it's all in my imagination but I'm on Roxicodone and Norco and It doesn't do me any good
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My MO also said the pain is not from tamoxifen. I am so frustrated. I am a fitness professional and love to workout. Some days my hands hurt so bad I can't do yoga at all. I have severe bone pain in my feet and it gets worse if I work out. I do get regular pain in my hands making it hard to do things. I have been on tamoxifen for 3.5 years now. I was suppose to switch to an AI because I had ovaries out 2 years ago but in that process they found out I have severe osteopenia. I have been on bone building meds for 1.5 years and my doctors have decided to keep me on tamoxifen for now because they were worried an AI would cause further bone damage. I am sick of being in pain. I feel like I am 85 when I get up in the morning...my feet hurt so bad. I can feel EVERY bone in my feet. I am 49 right now and wonder how I can continue to exercise when I am in pain like this.0 -
I was having that same thing when they took me off of Tamoxifen and put me on Aromasin.... Never connected the dots with the change in medicines. Family dr. said I had platar Fascitis.... I got new sneakers.. they helped some. Then when I could not make a fist and I was upset, I spoke to the pharmacist and he said it was the medicine - Aromasin. So I went back onto the Tamoxifen.
Don't let anyone tell you it is not the medicine that you are taking, we are NOT one medicine fits all. My oncologists had changed the medicine because he thought I would do well with the Aromasin, apparently not. Talk to your pharmacist and then talk to a health store (reputable) about what you can supplement the medicine with to counter the side effects.
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mdg - I had been on tamoxifen for 3.7 years when the hip/knee pain became so bad that I spent time in physical therapy, eventually went to a chiropractor (which I had never done before - but I was that desperate), and subsequently spent over a year in deep massage therapy before I finally decided to quit taking it. By that time I only had 5 more months to make it for 5 years. Both the MO and the RO always suggested it was my age and not tamoxifen. I quit because it was time for me to see if the pain would go away or if this was going to be a part of my life for the rest of my life. To my surprise within 3 months I was so much better, a huge relief from the constant pain that had me limping for 1.5+ years. I guess I bought into the suggestion that it was my age, now 74. I am not totally free of pain (I have been off since July 17th) but damn close to it.
I only mention this because if any doc had suggested it was perhaps the meds and that when I went off I stood a great chance of the pain going away.........I would have stuck it out on the tamoxifen for those last 5 months. Sending good thoughts and wishing you well.
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