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 Breast Cancer Diagnosis
 Tamoxifen and joint pain (Page 1)
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| Author | Topic: Tamoxifen and joint pain |
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Laurie Visitor Posts: 3 |
posted September 29, 2001 02:08 AM
 
I've been on tamoxifen now for about 6 months. Over the past two months I've suddenly started to have pain and some swelling of the joints in my hands. The pain is significant enough to make shaking hands uncomfortable. I also have noticed an increase in stiffness and pain in my knees and hips. Has anyone had a similar experience? I have heard that chemo has been related to arthritis-like symptoms. I didn't have chemo so I feel my symptoms are related to the tamoxifen. I'm interested in hearing from others who have had a similar experience. Have found anything that has helped reduce the symptoms (chondroiten, etc.)? Did the symptoms resolve when you discontinued the meds? My oncologist hasn't seen patients with tamoxifen induced arthritis but says he has seen some reports in the literature. Any feedaback would be greatly appreciated. Thanks, Laurie IP: Logged |
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Crystal S. unregistered |
posted October 04, 2001 06:48 PM
I have been taking tamoxifen for about 10 weeks. I have been experiencing 'bone pain' and the doctor has put me on Darvon. The pain reduces me to tears on occasion. This is a known but rare side effect. My hands and hips are the worst. I am hoping the pain will not continue at this level as I am convinced I can not endure this for the 5 year regimen. My doctor seems to think this is something we will be able to control. Crystal IP: Logged |
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Teri Visitor Posts: 1 |
posted November 29, 2004 01:00 AM
quote:
I am experiencing the same side effects with my Tamoxifen treatment. I have been on it for the past 6 weeks and have had aching joints in my kmees, elbows and fingers. Can you let me know what feedback, information', or recommended treatments you have received. Look forward to your response IP: Logged |
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laura12 unregistered |
posted February 28, 2005 11:14 AM
I have been on tamoxifan for over a year and for the past month or so have had developing pain in my hip and now my knees. For some reason it seems to be worse when I am sleeping. I did have chemo but am not sure if it is related to that, tamoxifan, or something else. IP: Logged |
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SOOZQ Visitor Posts: 20 |
posted April 23, 2005 10:39 AM
I've been on tamoxifen since September 2004 and luckily have not noticed joint pain...yet. The thing I noticed was an increase in number and severity of hot flashes, and most surprisingly, a problem with my vision. At first I thought I was crazy...things were blurry and my vision isn't bad - 20-50. I asked the pharmecist, he said he couldnt find anything. I asked the oncologist, and he recommended I see an opthalmologist. When I did, he examined by eyes and said there were deposits on both corneas - a series of dots and long marks, a frequent occurance for tamoxifen users. He indicated that years ago when tamoxifen doses were higher, the corneal problems were far greater. The marks will be there as long as I keep taking tamoxifen. It also causes dry eye. I thought I was tired, my eyes would burn. The remedy? He put me on drops that encourage the production of tears (I think its an anti-imflammatory medication) and gave me various forms of drops to use throughout the day. When that didn't totally do the trick, he "installed" plugs in my tear ducts to act like a bathtub plug. Any tears produced would remain in my eye rather than run down the "drain." My oncologist has now switched me to Arimadex (not because of the eyes). He indicated that he now feels it's a better medication. The hot flashes have subsided a little bit and I haven't noticed anything else...the eyes are still the same. Thank you all for listening..and keep fighting the cancer beast!! Susan IP: Logged |
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Sylvia Avina unregistered |
posted May 02, 2005 11:49 AM
Hi Laurie... I've been on Tamoxifen for 3 weeks and I have exactly the symptoms you describe. I did have chemo (A&C, and Taxol), but no joint issues until now. I've also been taking 2000 mgs of Vitamin C and iron pills. I have no solutions for you but I share your pain. take care Sylvia
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Jennie unregistered |
posted May 05, 2005 07:32 PM
I have been taking Tamoxifen for about two months now, and have very bad joint pains, particularly in places where there was a weakness before. Now my hands are almost too painful to use at times. I spoke to the Breast Cancer Nurse at the hospital who said - yes - it does do that - but did not offer any help. It seems this is a well known side effect even if it's not in the medical journals. I am also experiencing the most horrendous sweating drenching my clothes which seems to come when I am stressed- either physically or mentally. My GP said to carry on for another month and if there was no improvement to go back and see her again. I am now getting blurred vision, but am not sure whether this is tamoxifen directly or merely the fact that salty sweat is dripping in my eyes! My sympathy to everyone who is suffering similarly - the bits in between the side effects must surely be worth having? I keep trying to tell myself that - I wish you all good health and a long and happy life. Jennie IP: Logged |
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SOOZQ Visitor Posts: 20 |
posted May 07, 2005 07:39 PM
Jennie, Check out my earlier post regarding tamoxifen and vision problems. I noticed a problem with my eyes fairly quickly after taking tamoxifen. Although the "tear duct plugs" seem a bit wierd, they were painless for the opthalmologist to put in and I could tell a difference in about 2 hours. Please check it out - don't suffer if you don't have to. Let me know what happens. IP: Logged |
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toughcookie unregistered |
posted May 16, 2005 01:47 PM
I have been on Tamoxifen for about a year now and have recently begun having problems with severe bone pain. I was switched to Tamoxifen from Arimidex for the same reason and got some relief for a about 6 months. I'm also on diclofenac, an anti-inflamatory, which I just found out intensifies the effects of Tamoxifen. There is a long list of meds that increase or decrease the effects of Tamoxifen so you may want to check that out. As far as the sweats or hot flushes go you might want to talk to your doctor about using Evening Primrose Oil. I went to see a holistic medicine practitioner hoping to get some relief using acupunture. She recommended trying 1000 mg of Evening Primrose Oil twice a day first. It's made an amazing difference. No more soaked sheets! My oncologist said it was safe as far as estrogen production was concerned. I was told to stay away from soy products, phyto estrogens, black cohosh. Hope this helps. IP: Logged |
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Sister unregistered |
posted May 18, 2005 10:38 AM
Laurie: I have been on tamoxifen for 3 months following radiation and A/C chemo. I have been having pain in my knees and my hands (particularly the thumb on the side of my cancer). I can't find any medical literature listing these side effects, but the pain started within days of starting tamoxifen. I have been taking Aleve daily and it seems to take the edge off. If anyone has found something that really works on the pain, I'm listening. IP: Logged |
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Heather, Chester unregistered |
posted July 09, 2005 03:48 PM
I have been taking Tamoxifen (following surgery and radiotherapy) for two and a quarter years now. For the last six months or so I have had increasing trouble with my joints. My finger joints seem to be getting more swollen and painful every week, to the point that I'm concerned I may have to give up my job. I'd wondered if Tamoxifen could be the cause......after reading all the messages here I'm sure it must be. I will be discussing this with my doctor. Thanks for the info. IP: Logged |
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run2win unregistered |
posted July 09, 2005 10:09 PM
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BethIn unregistered |
posted August 15, 2005 12:53 PM
I'm currently trying to decide whether to start Tamoxifen. I don't mean to scare anyone, but I did want to share my information. My mother developed rheumatoid arthritis after a couple of months on Tamoxifen 15 years ago, and she is still taking prednisone and remicade to manage it. She stopped the Tamoxifen as soon as symptoms appeared. She did not do chemo, and the pain first appeared in her ankle but now affects knees, elbows and hands. Seeing all the posts here is helpful - my mom's experience wasn't just a fluke, though it certainly sounds much more severe than what others are going through. quote: IP: Logged |
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karen stilwell Visitor Posts: 9 |
posted September 03, 2005 09:04 AM
Laurie: I sympathize with you. I have only been on tamoxifen for a week and the pain in my joints, especially my hands, is tremendous. It is hard to type and almost impossible to hold a pen and write. I had to buy those "things" you slide onto a pen to make it fatter just so I could hold on to it. My first "immediate" symptomes when I started the medicine were sickness, dizzyness, and diarrhea. That only lasted 3 or 4 days. My oncologist says the feeling of arthritis is a symptom but he feels sure it will go away after my body gets used to taking the medicine. I sure hope he is right. I would hate to have this joing pain for 5 years. I don't think I could stand it for that long. He has also insisted that start a walking routine. He says that will help me adjust to the medicine and side effects plus walking is also good in keeping the cancer away. Good luck to all of us. Please let me know of anything you try that helps and I will do the same. Karen
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ohmary unregistered |
posted September 04, 2005 11:38 AM
Dear Run2Win I am 44, did AC+Taxol and I have terrible joint pain. Like you, once I get going I can ride my bike, but for the first few hours of the day I am a 90-year old granny shuffling around my apartment. I am convinced it is the Taxol. It started just about the time I finished Chemo. vicodin helps a little. QUESTION TO YOU: why did you decide not to take Tamoxifen? I think I will decline it too, but wonder about why you decided this. Please respond to ohmary@earthlink.net
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jen013 Visitor Posts: 1 |
posted October 04, 2005 11:18 PM
At the age of 48 I was told I had stage II breast cancer. I'm in my 4th year remission,having AC/Taxol Chemo and rad. I have been fighting knee,lower leg pain and both arms are in constant numbness and pain. AS of today, I was told I can no longer work because I have irreversable nerve damge due "most likely" to Taxol. I never took Tamoxifen but still ended up with severe pain from head to toe. I wish you all luck in the world. quote: IP: Logged |
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ohiogirl Visitor Posts: 1 |
posted October 10, 2005 11:29 AM
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janeenadamsmartin unregistered |
posted October 16, 2005 08:39 PM
All, The common theme here is estrogen depletion, which happens with tamoxifen (it binds up the sites so estrogen cannot function) and radiation (which somehow causes premature menopause and subsequent estrogen reduction). I have severe joint pain and the only thing new for me is very suddenly going into menopause. Google "menopausal arthritis" and you'll be surprised what is out there. There is a recent article on tamoxifen and joint pain and it's now recognized in the literature. The article is as of 9/05. I have been suffering for 7 months, first thinking it was a pulled ITB band, then thinking autoimmune like RA or lupus. All my tests and xrays are clean, so I am now going to introduce hormones. I am not sure it if it the total amount of estrogen that matters or the ratio of estrogen to progesterone. For those that can't take estrogen, seek out HRT-nHRT yahoo group and read. Good luck to everyone. jan IP: Logged |
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karen stilwell Visitor Posts: 9 |
posted October 27, 2005 09:03 PM
I have now been on Tamoxifen for about two months and I go to a new doctor next week. An arthritis doctor! The joint pain is tremendous and my bones feel like they are twisting. I have a knot the knuckle on my thumb. So far I hurt in both hands, both feet, right knee, and right elbow. I don't care what they say shutting down your estrogen flow all at once is what has caused this. My only other choice is to quit the Tamoxifen but then my cancer will come back. What do you do? Will I never feel good again? This is ridiculous and depressing. IP: Logged |
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Tricia21 unregistered |
posted November 01, 2005 03:00 PM
Karen - I started Tamoxifen in late July and have been complaining to my oncologist that the pain in my left leg is like a toothache. I can't sleep more than 20-30 minutes at a time. It's frustrating. He's ruled out blood clots, and now I have to have a bone scan on Friday. He keeps telling me that he's never heard of this side effect and that I've stumped the docs. Nothing touches the pain - Aleve, Tylenol,Motrin, - and now I'm taking Oxycodone - that still doesn't touch it. I was happy when I Googled leg pain and tamoxifen that this site came up and found that I wasn't the only one complaining of this excruciating pain. What - if anything works for you??? quote: IP: Logged |
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Mary B unregistered |
posted November 03, 2005 02:45 PM
I came across these postings when I searched "tamoxifen and arthritis." I was diagnosed w/bc a year ago. I had anthracycline and taxol chemo, surgery, and radiation. I am on tamoxifen. I was hoping to feel better, but am not. My hip, my feet, and my hands hurt like anything and the rest of me aches. I thought it might be the cancer moving to the bone, but the scan came back clear for that. I am sorry for the misery of each and every one of you, but I am relieved to think I am not alone. Mary IP: Logged |
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karen stilwell Visitor Posts: 9 |
posted November 22, 2005 10:57 PM
Tricia, Sorry it took me so long to come back to this site. This is going to sound crazy but I researched and found that a certain type of tart cherry is great for inflamation and pain. I order concentrated Cherry Juice from Kings Orchard online. I also purchased a book from them called "Pain/Inflammation Matters". It tells you foods to eat and avoid and it has helped. My joint pain is so terrible and my Oncologist will not listen to me. I go back to my arthritis doctor on December 1st to see the results of the blood work he did. He did 20 blood test and took 10 xrays. He agreed that I definately have something strange going on. At least that way I will know what I am dealing with. It kills me to type and even write with a pen. It is very frustrating that my Oncologist doesn't want to listen to me. He just keeps repeating the same thing over and over "If you don't take the Tamoxifen your Cancer will definately come back". This may sound stupid but sometimes I think getting off the Tamoxifen would be so wonderful I wouldn't care if my Cancer came back. The only thing I have found that helps me sleep (more than two hours at a time) is an over the counter pill called Legatrin. It is near the Tylenol. I only take half a tablet and have been able to get my rest again. At least it helps to get a good nights sleep. Good luck Tricia. My personal email is kpstilwell48@aol.com and I would love to stay in touch with you. Since our doctors won't listen at least it will help to have each other. Karen
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karen stilwell Visitor Posts: 9 |
posted November 22, 2005 11:08 PM
Mary, I know how you feel. I thought I was crazy until I found this sight. There really are others out there that hurt from the Tamoxifen. The doctors just don't want to agree with us. This is what I researched and found out: I was pre-menapausal, still having a period, on birth control pills, and had a healthy hormone level. Tamoxifen shuts down your estrogen flow all at once, kind of like turning off a running faucet. This sends your body into shock which can cause severe arthritis pain and inflammation. A person that is post-menapausal is not affected as drastically because their estrogen flow has slowed down naturally instead of all at once. Their body isn't shocked as bad. Were you pre or post menapausal? Good luck. I will post the results from my arthritis doctor after I visit him on Dec 1st. Karen
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RoxyB Visitor Posts: 1 |
posted November 26, 2005 06:46 PM
Hi Susan I guess I'm lucky as I don't have breast cancer but have been prescribed Tamoxifen for severe breast pain. I took the drug for nearly six months and although I complained to the consultant that I had sore eyes and had developed concretions he said that these were not reported side effects. My eyes are now totally dry and I have had punctal plugs inserted (with a great deal of pain!) I am allergic to all the drops I have been prescribed but have settled for ones that aren't too bad. I have yet to convince my consultant that Tamoxifen is responsible for this condition and have only just found this site or any indication of the drug being quite so dangerous as it appears to be. I also had hot flashes as others including Jennie have reported. I found that an old red indian remedy called black kohosh has totally erradicated the problem. It was a bit hard on my stomach at first but I think I got used to it. Some people can't tolerate it at all but as I was getting them every half hour day and night I persevered. Any good news on the dry eye situation would be welcome. IP: Logged |
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BB unregistered |
posted December 01, 2005 12:14 PM
I have been on Tamoxifen for a year and a half for DCIS. I did not have chemo or radiation. The only change in my life is Tamoxifen. First my hips started to ache severly when I was sleeping. Next my fingers on both hands have become sore, swollen and achy. My ankles are severely stiff whenever I lay down, even if only for a little while. And now it's my knees. My left knee even has a "bubble" of fluid. I've had RF and ANA blood tests. Both negative. I asked my oncologist and he denied this was because of Tamoxifen. I am confident it is. I too have considered going off it because my risk of recurrence is supposedly low. I'm glad I'm not crazy and others feel as I do. IP: Logged |
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