tamoxifen and joint pain

[Butterfly318]

Dear Nancy

Hope the surgery goes well.  I too enjoyed a break for surgery and as you say you suddenly realise that you're not hobbling around in pain.....

I found TEVA the kindest brand with fewer side effects.  I have Osteopenia (pre osteo arthritis) so take Adcal D3 with my tablets.  I have changed to Letrazole after 2 years on Tamoxifen.  This is what my Oncologist prescribed. 

Take Care Butterfly. x   

[Dancing_Nancy]

Totally relating to many of the posts here. I've been taking Tamoxifen for just over a year. I couldn't tolerate Anastrozole at all as the joint pains were excruciating. On Tamoxifen it varies, sometimes I'm in agony and sometimes just a nagging pain. Fatigue knocks me out after one to two hours of any kind of activity. I've gained weight and it's mostly gone on my abdomen. I've tried dieting but results are soooo slow I become disheartened. My memory is shot. The other day I was saying I would like to see Sam Smith live and my son reminded me that I already had, a year ago ... I had completely forgotten!!

I had to stop taking Tamoxifen a week ago in preparation for my reconstruction surgery which is tomorrow. And today I noticed that I am nowhere near as stiff when I get up off a chair and the getting out of a chair process is much easier. I saw oncologist yesterday and he told me another patient had similar issues which completely disappeared when she changed brands. He couldn't remember the name offhand but will let me know. Apparently the one I've been on costs £4 a month and this new one costs £70 per month I think.

I've been told that my cancer was highly aggressive and oestrogen receptive so I would be very reluctant to stop taking it but my Lord, I feel I've aged about 25 years since my diagnosis in 2014!!

[KSartist]

I have been taking Tamoxifen now for 3.5 years and have had some ailments that come ang go through the years.   

The first year I had major hot flashes & trouble sleeping.  Around the second year I started having muscle aches in legs & muscle fatigue (like just climbing our stairs, my legs feel tired), my ankles and feet ache, joint aches in hands, wrists, finger joints, knees, ankles and feet (especially in the cold, damp winter).  Then that stopped for a time.  Now I am at 3.5 yrs on Tamox and fatigue, the tired legs, muscle weakness and some aches in the muscle and knees are back.  I also get extremely warm when exercising even in 72 degree weather outside, increases hot flashes to where I feel dizzy and sick.

I am an active person and hiked in the Rockies back in 2014.  Now, I don't think I can do it, I had a hard time hiking 2.5 miles without my legs feeling like they were going to give way.  It is even difficult at times to walk my treadmill but I do 30 mins a day.  I am only 47 and feeling very defeated as well and as though I have aged 30 years.

Beause I have a very strong family history of BC and my Oncologist also suggested extending my Tamox for another 5 years.  At my 5 yr mark she is going to test my probability for the cancer coming back and will make a decsion then if I need it another 5 yrs.  I am praying not.

With all that said, I know Tamox is very effective for my type of BC and I take it everyday.  I have come to terms that I have limitations on my physical abilities now, what I can do and learning to live with the discomforts.  My husband always tells me that, yes, I may have limitations now, but I am ALIVE and it beats the alternative.  So when I become miserable, I break down, cry, turn to my husband for support.

I feel your pain and feel robbed of my normality.  However, I know there are women who have it much worse that I do and that helps me keep things in perspective.

Blessings!!

[Fillydee]

I have been on tamoxifen for nearly 18 months and keep telling myself it will get better! But waking in morning with swollen fingers that wont straighten, joint pain, sweats arent as bad but still there. Pins and needles in fingers and numbness for a good hour each morning. Now i have aches in lower back and top of leg joints. am seeing doc to ask if i can come off for a while. concerned what will I be like after another 8 years on this stuff? i have horses and want to be an active sports person. i go to the gym and do yoga. I have tried everything remedy and supplement possible. I dont think i am suffering as bad as some people but will it get worse? and what is the alternative? do you tale the risk and try to feel normal again?

[Andreaf]

I do sympathise, Ive have had lumpectomy my lymph nodes removed followed by chemo and radiotherapy.  Just when you think you've managed to get through all the treatment a year on tamoxifen I don't have a part of me (except my head) that doesn't hurt even my fingers ache !  It's a very difficult balance to know whether to carry on with the Meds or enjoy a better quality of life !  My onco never really said much about the aches and pains my doctor has prescribed paracetamol but they don't work! It wasn't as bad as it is now I can only assume it's  tamoxifen I'm also or was a very active lady I have horses and find life very difficult looking after them feeling as I do! 

I have read drinking  tonic water helps, I'm going to give this a go, do hope things improve for you x x x 

[Ms. Understood]

Thank you. I appreciate the feedback.

[Carolyn52]

I have taken Tamoxifen, Arimidex and now Letozole and they all have horrible side effects in different ways but they are really important parts of the treatment, Try taking cod liver oil daily and a glass of tonic water as that might help a bit and they are quite natural supplements.

[Jill1998]

They really shouldnt ignore your side effects because they are really common side effects from Tamoxifen just check out the posts on this site .I am going back to Optician because I have really noticed my eyes are a lot worse after 7 months on Tamoxifen .Your joint issues could be due to meds too.Could you ask to see another Onc in the dept if you are not happy with yours??

[Ms. Understood]

Hi everyone

I'm having the same side effects and I know my body. I'm only 43 and I have been physically active since I was a teen. I have pain in my lower back and more pain in my right hip. I'm also experiencing 15% vision loss. I contacted my oncologist and she is telling me that the side effects are not from the tamoxifen. I went to a eye doctor that my primary eye doctor sent me to and he told me it's my age. I'm so upset, because I feel ignored and I don't appreciate being bull shifted to. Im going to another eye doctor and I'm changing my oncologist. I'm fed up.

And on top of it all, I'm getting arthritis in my hands to the point it hurts to even type this message or hold a pen or a brush for a short period of time.

Furstrated.

[dutch]

Hi Leew.  Please see my post from 15.12.15.  I have now stopped taking tamoxifen for about 6 weeks on the advice from my specialist (although he does not seem to agree that this is tha cause) and although I initially thought the pain in my lower back was easing, it is now unbearable again.  I recently had an xray and ultrasound through my GP, but they can't seem to find the problem.  Off to see my specialist in 3 weeks time to discuss with him where to go from here, but not confident that he will see tamoxifen as the cause...  I feel quite helpless really and just want the pain to go away so I can get on with living a normal life again. Advice from anyone reading this on what to take to ease the pain, as anti-inflamatory's don't seem to be working

[leew]

I quit taking Tamoxifen back in June 2015 and to this day, my foot pain in the heel has gotten terrbly worse.  It did not go away nor was my Oncologist even concerned that I suffered such pain because of the tamoxifen.  I have been to a podiatrist and there isn't anything that he can do to relieve the pain and suffering.  He has tried everything for what he thought was plantar fasciitis.  I was not going to take these meds for five years, no way!  Not after it caused my severe lower back pain and heel pain.  Am I the only one out there suffering?  If not, what did you do to get rid of the pain?

[Jill1998]

The first couple of years are the most crucial with the meds ,if it spoils your life to that degree it's not worth it .There are 2 antidepressants that are prescribed to help with Tamoxifen side effects,some of the ladies I talk to have found then really helpful.If it is affecting your mood badly speak to your GP urgently.

[sandylo]

Read my comment

[sandylo]

Same here after five years I've aged at least twenty years after the tablets sitting here very depressed at the moment as now its ten years of tablet taking discharged monday and sent home on another five years of tamoxifen

[Jill1998]

Ps quality of life is v important it's a difficult balance isn't it.

[sandylo]

Read my comment a posted today on all my different meds made me housebound

[Jill1998]

Stick with it for a couple of weeks and see how you go on,I found that nausea,dizziness settled after 2 weeks and joint pain settled down after a month or so.What brand have you been given,some seem a lot kinder than others .

[sandylo]

All the drugs have side effects I started on arimidex and was in total agony I stuck it for 18 months on advice of my oncologist then was put on exemerstane things didn't get much better so after a year on them was put on letrozole which was very slightly better I stayed on it till this Monday when I was discharged my oncologist said now they are continuing the tablets for ten years instead of five and sent me home on tamoxifen I've only taken four days and my head is terrible as tho I'm falling over and pressure and my urine has today turned bright yellow don't think I can even think of having another five years of problems as I have already lost five as not been able to walk more than 100 yards at the most

[dutch]

Thanks very much for your advice Jill, much appreciated

[Jill1998]

Hi Dutch,joint pain is a common side effect with Tamoxifen (even though they say it isn't ),however I found that after about 6 weeks ir passed and is now only occasional and bearable .Check what brand if Tamoxifen unit have cos some are most definitely better than others for side effects and effect different people in different ways.I am on Teva.

[dutch]

I have been taking tamoxifen for about 3 weeks now and am experiencing lower back and hip pain like never before.  I had a lumpectomy this year, followed by 4 weeks of ray treatment. Simple tasks like getting in and out of bed, the car and off the couch are causing excruciating pain.  After many trips to the physio, with no relief, I started to look a little closer at the possible side effects of tamoxifin.  I have since read the many posts on the web and am happy to see that I am not the only one experiencing these symptoms.  I have contacted my specialist and although he says it is unlikely that the drugs are causing this, he has suggested that I stop for 6 weeks to see what happens...  I can't imagine 5 years of this drug if that is the kind of pain I will have to put up with.  Any advice would be appreciated :0)

[TerraRoop]

I was on tamoxifen for 4 years and started getting terrible right calf pain, tightness, for a period of 6 months. During that time because of the tightness I tore both the gastric and solcus muscles in my calf because of the tightness.I went off the tamoxifen and within 10 days the tightness and pain stopped and has not come back. My oncologist said it was doubtful that the tamoxifen was causing the tightness, after 4 years on the drug. He said if there was to be a side effect it would of started sooner. I proved him WRONG. He did however give his blessing for me to stay off the tamoxifen as I had been on it for 4 and a half years. I am still going thru physical therapy to stretch my calf muscles from all the damage the drug did. It has been 2 months now since I went off the tamoxifen and the pain, tightness in my calf has not come back.

[JSB]

Hello. I've just finished five years of Tamoxifen in October and my joint pain seems to be worse! Both knees are now painful plus my feet (feels like someone is sticking a knife into my heels and my toes hurt) and my finger joints are tender. Not sure what to do - anyone else experiencing this?

[Katesarah]

Hi there. I think it is really important to get your mum checked out properly. it is very easy to assume that all the aches and pain are drug related but it is important to get a medical opinion on this as we are all different. I have had terrible night pains on and off for the last 3 years and I know that it is a vicious circle because the more I toss and turn the sorer my joints are the next day. I also invested in a memory foam topper which helped me to feel comfy. She may also be able to get something to help her sleep from her GP as that seems to work better than painkillers to allow me to get a better sleep when I am desperate .

[Jill1998]

Hi Gem,joint pain is a very common side effect of Tamoxifen and the other medications given to post menopausal women.Some women are very badly affected, it can settle down once your body gets used to it, if not ,it is worth looking at the alternatives with her Oncologist. Hopefully it will prove to be the medication and nothing more serious .

[Gemxo]

Hi everyone, my mum has recentley been diagnosed with breast cancer & has been put on tamoxifen, since shes been on them shes getting awful pain around her upper back, she cant sleep, she barely even goes out anymore where shes in so much pain, shes been on them for nearly a month now. she also suffers rhuematoid arthritis. she originally went in hosptial for rib pain, turns out she fractured it, they told her they was sure it was bone cancer, then she went to an oncology doctor, he told her he strongly believed it WASN'T cancer at all. well shes sinced been diagnosed with breast cancer, like i said. They arent being very quick with her treatment, shes still unsure whether it is in the bones as well but they've just given her these tamoxifen. So basically shes really worrying that its spread etc, thinking thats whats causing her this pain. have any of you guys suffered excruiating pain on these tamoxifen pills? would love to be able to put her mind at ease somehow. thanks 

[Brian Lang]

My wife had a lot of problems with her hands while cleaning, so I solved the problem ....ordered cleaning service . Everyone happy !!!(especially my dear Hanna)

[hopalong]

Vitamin D levels normal so not cause of joint pain. Looks like it's all due to lack of oestrogen.
😞

[hopalong]

I'm waiting for my vitamin D levels to come back. Calcium was ok. have got a DEXA scan this week before I start zoladex and exemestane.

[Nextstep]

I saw my consultant today to discuss blood test results which had shown I had profoundly low levels of Vitamin D.  I had a MS March 2013 and have been taking Tamoxifen since.  He did the blood test because last time I went for a check up I was really struggling with my shoulder. 

I have since been diagnosed (separately) with a frozen shoulder and am going to have it manipulated under general anaesthetic on Wednesday.  You don't want to know what this involves, just hope you never get it!

From research I have done it seems that frozen shoulder is most common in women aged 40 - 60 and there is a suggestion that it is linked to lack of oestrogen.  I asked my consultant if he had come across many people taking Tamoxifen who have suffered with it and he explained that the menopause/Tamoxifen result in decreased oestrogen in turn leading to a reduction of synovial fluid in the joints, hence they become more painful.

So I now have to take mega doses of Vitamin D (lack of which can lead to osteoporosis and leads to tiredness/general lack of oomph) for a month then a maintenance dose - I would recommend you all ask to be checked for this as it is a simple thing to test for and remedy.  I am sure we could all do with an oomph boost!

I would be interested to hear if other people have had frozen shoulder and how they have coped with it.

[pinky3]

Hello

Welcome to the forum, I am sure you will find lots of support.

I was wondering if you had intended to use your email address as your user name?  I am just concerned about your privacy and security as you may find you receive some unwanted emails as this is a public forum.

Perhaps one of the moderators will be able to assist regarding any changes you may wish to make.

Best wishes

[julie.mace@live.com]

Hi, my oncologist said tamoxifen isn't proven to effect joints...RUBBISH we know different.

[julie.mace@live.com]

Your piece was like reading about myself, exactly the same. Was thinking about going to doctors and just getting really strong drugs to block it out and carry on with my day to day living. Don't want to give in to it. Won't take nsaids as I understand they can conflict with Tamoxifen working. 

[julie.mace@live.com]

---

@lucy12 wrote:

I saw my GP last week and having spoken about the joint pain before she asked how I was doing.

When I told her how much it was impacting on my life and how tempted I was to stop the tamoxifen she prescribed me Naproxen for one month to see if it helps. If it works she will put it on repeat. She also prescribed me Omeprazole to counter any affect it may have on my stomach lining.

In less than a week, the joint pain has vitually dissappeared - I can't believe how much better I feel. I'm sleeping better as not having to wake up to turn over in the night, I can walk my dog for 1.5 hours without coming home limping and can get up off of the sofa without wincing!

Long may it last!

Lucy xx

---

Hi, just joined this site to say I was told we can't take Naproxen on tamoxifen because it is a nsaid drug which may interupt the working of tamoxifen. 

[Bblambre]

I have been reading through all of these posts. It is very reassuring to know that I am not alone in this struggle. I have been on Tamoxifen for almost two years. I feel like my body has aged by 30 years. I hobble around like an old lady most of the time. As I read along tonight, I was thinking to myself that I am just going to stop taking it. Then I read Stella's post about her symptoms disappearing. I'm going to try to hang in there!

[danawalker1002]

Thank you very much for the information.  I have been experiencing joint pain in my arms and legs and in my mind I contributed it to the Tamoxifen.  Your information was very helpful, I will also try yoga to help with the pain.

[premmie1]

Thank you...this was very helpful.

[TerryBos]

I have contributed to this thread two or three times over the past few years and feel I must post an update due to a huge change.  I met with my new oncologist last week (moved to GA from MD) who feels that the joint pain I was experiencing was due to the following triple-whammy:

1.  Taxotere during chemo can take a year or more to recover from (I reacted poorly to this during treatment)

2.  Chemo throws you into menopause which increases aches and pains in women

3.  Tamoxifen.

Because I am doing so much better in my fourth year and with light yoga, she feels that the combination of the three things was the cause of my problems - especially the Taxotere.  I never gave it a thought.  I am about to switch to the aromitase inhibitor after a bone density test this week to complete the 10-year therapy.  I hope everyone else is starting to feel a bit better, also. 

[tracy2905]

I was suffering severe side affects mood swings.. bleeding gums..weight gain. Hot flushes. Joint and knee pain.. anxiety..and a whole heap more after 10 months of tamoxifen.. I took myself off them after 10 months and now been off em 1 month. My quality of life is improving. I came off my tamoxifen cos my statistics using them was less than one per cent so please talk to someone first. .. I made my own decision .xx

[kbmd]

Very interesting to hear similar issues with Tamoxifen.  I thought it was arthritis which runs in my family but I'm only 45 years old and it's pretty severe at this point.  Then I remembered reading it is a possible side effect of Tamoxifen which I've been taking for nearly a year.  I had a very traumatic surgery experience and cannot see doctors due to anxiety and panic attacks so am glad to discover some options I may research and try on my own.  I have taken Alleve on occasion but not thrilled to be taking more pills and have been considering quitting the Tamoxifen for a couple months now and going back to the restrictive (clean) diet, and other natural options.  I've always valued quality over quantity of life and these days there isn't much quality.  Thanks for listening.

[Kess]

I am sorry to hear all the people suffering from joint pain. For those reading this thread who might be facing a decision about whether to take it or not, please dont think that everyone on Tamoxifen has such bad symptoms. Some people suffer very mildly, and some really lucky people have no side effects at all.

[piggsytrotter]

Hi. I'm taking tamoxifen and I was also having horrible leg and foot cramps, although not so much joint pain. I've always suffered from leg cramps and years ago found Magnesium Phosphate tissue salts stops the cramp in its tracks. It used to be available in Health Food Shops under the New Era brand of tissue salts, but they're no longer available. They were tiny tablets that melt on the tongue which is one reason why they work really quickly. 

However I have found an alternative in the USA, Hyland's Magnesia Phosphonica from website www.mynaturalmarket.com They work just as well as the New Era ones did.

I also take a calcium/magnesium tablet from Holland & Barrett and I've doubled up on that as well. The combination of both works well for me.

I should point out that I do not have any connection with any companies mentioned, I only recommend the products through personal experience. xx

[lucy12]

I saw my GP last week and having spoken about the joint pain before she asked how I was doing.

When I told her how much it was impacting on my life and how tempted I was to stop the tamoxifen she prescribed me Naproxen for one month to see if it helps. If it works she will put it on repeat. She also prescribed me Omeprazole to counter any affect it may have on my stomach lining.

In less than a week, the joint pain has vitually dissappeared - I can't believe how much better I feel. I'm sleeping better as not having to wake up to turn over in the night, I can walk my dog for 1.5 hours without coming home limping and can get up off of the sofa without wincing!

Long may it last!

Lucy xx

[June_BCC]

Hello  Melissa7art

Welcome to the forums. 
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June, moderator

[melissa7art]

I have been diagnosed with LCIS and I've been on Tamoxifen for 2 years because I'm at high risk for breast cancer..  For about the last 3 months I have noticed my leg cramps getting worse, especially while I have been sitting all day at work, and waking up at night recently because of the achy pain.  I was concerned about the pain until I read the other comments that it took awhile before the drug caused arthritic symptoms.  My oncologist said that this drug did not cause it, but the one for post-menopausal women did.  I'm waiting for new insurance to become active in order to make an appointment with him to discuss this. Taking NSAIDS daily as a solution is out because they adversely effect your stomach lining.

I'm going to try the suggestion one person gave of the yoga hip openers before I go to bed.  I also may make the decision to go off the drug and stay on a plant based food diet with only a little dairy.  I read up on quinine, and it is not recommended by the FDA in the USA to take because over time it has dangerous side effects and is primarily prescribed for malaria.

What a relief that is not just me.  If I find an alternate solution for my leg cramps, I'll be sure to post it to this forum.

Thank you.  

Melissa

[Jbenvig]

I have been on tamoxifen for 2 years. I started having joint pain in my fingers and sometimes my toes about 5 months ago. It started suddenly and I thought it might be the tamoxifen, or maybe Lyme disease. I knew it wasn't arthritis because the pain would not always be in the same finger or toe. Plus, interestingly, it got worse at night when I was sleeping. My oncologist didn't take my complaint of joint pain seriously but I just recently stopped taking tamoxifen temporarily per my oncologists instructions because of another problem I was having to see if it helped. My joint pain is slowly improving now that I am not on the tamoxifen. I had an appointment with my primary care doctor recently and he thinks the tamoxifen may have caused an increase in lactic acid (lactic acidosis). The fact that my pain was so much worse at night when my muscles weren't moving and able to pump out the lactic acid gave him this clue. This might be worth looking into for anyone experiencing joint pain.

[Helm]

I can relate to all the posts about joint pain. I'm on Tamoxifen and since I started the aches and pains got steadily worse till I discoverd a tip about drinking tonic water (because of the Quninine in it) I have to drink tonic water every day to stop getting so uncomfortable. I still ache a little bit but it's nothing like it would be without it.

[Eleanor_W]

I am at the end of my teather one year after starting to take Tamoxifren, I had better quality of life when going through chemo and radiotherapy. I have aches and pains everywhere and some days I just can not fight it. Coupled with extreme exhaustion, I am getting to the stage where I do not think I can carry on like this. The pain wakes me some nights and obviously its frightenening to think that something else might be going on. I have had a full blood screen which was clear recently and i am being told by my doctor on each visit that its ;normal' for some people to feel like I do. I was diagnosed nearly 2 years ago and I can not remember what it feels like to be healthy anymore.  

[janetp]

I have been on tamoxifen for 1 year now and the joint pain is getting worse.  I started exercising 5 days a week when I first felt the joint pain in both legs and arms.  It helped for the first six months, but now it is getting worse.  I am also concerned that taking this for 5 years is not going to be a picnic.  I can't sleep at night due to the pain when laying down as well when standing and moving about.  I plan on talking to me dr next visit to see if there is anything else I can take beside tamoxifen.  Really would like a good nights sleep without taking tons of aspirin.