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tamoxifen and joint pain

TerryBos
Member

Re: tamoxifen and joint pain

Interesting, CSurvivor!!  Since my last post, I retired from teaching and moved from Crofton, MD, to Marietta, GA, over the summer and now have to find a new oncologist.  The reason I mention this is because I have been feeling less pain since the move.  What can it be?  Is it the air mattress I have been sleeping on since cleaning out our townhouse and moving here, waiting for our stuff to arrive?  I have not awakened at night (as I always did - several times) with the usual aches and pains.  Now I refuse to give it up and buy a bed!  I may be crazy but just throwing out another suggestion that might be helpful to someone.  I am still walking and doing the laptop yoga, which I now swear by.  Hope you are feeling some relief...

Csurvivor61
Member

Re: tamoxifen and joint pain

Hi neighbor . . . I live in Anne Arundel County also. Your comments prompted me to write. So . . . here's my story . . .

I went to a general practioner whom I had never seen before; he reviewed my chart, saw I was taking tamoxifen and immediately asked if I was having joint pain in the knees. I gasped because it was never mentioned in my pre-meeting with nurse. He was the one who explained that one of the side affects of tamoxifen is joint pain. He offered three other medications other than tamoxifen. The oncologist said all three carry an even greater joint pain risk, agreed to take me off tamoxifen for 6 weeks to see if there is any difference. Actually the oncologist seemed a bit defensive about tamoxifen as the prescription. I'd hate to think there is some link to medicinal sales of this product and that practice. Didn't realize the joint pain I was experiencing resulted from this for the past 6 months which is getting worse and worse. Arthritis runs through my family so I thought it was that. I will be looking into options cause 5 years fighting off breast cancer is great but I'd hate to end up in a wheel chair unable to walk when it's all said and done.
Alexa2623
Member

Re: tamoxifen and joint pain

Hi Everyone

It's not just me then.  I have invasive lobular cancer of right breast, along with multiple heart problems, scoliosis and kyphosis, (double spinal curvature), and a list of other medical problems.I am on tamoxifen, and 8 other heart drugs! For over 30 years I have excercised regularly.  So the new extra pain I just thought was part and parcel.  And I do know that excercise helps the pain, and also to stay supple. But this is different.  However knowing other folk are in the same boat makes it easier to cope with.  Just a point.  Aged 35 I was told my back was so bad that I'd be in a wheelchair b/4 I was 40.  Since then I have done stretchy bendys every day and that wheelchair is way out of sight. I am now 70+!  I take cod liver oil and glucosamine. It seems to help.  Don't give up on excercise, but don't over do things.  My back is bearing up, it's the rest of me that is cracking up!!

Good luck

Alexa

IdazonaMom
Member

Re: tamoxifen and joint pain

I'm so relieved to read about your experiences with joint pain, even though it's a shame that most of us didn't know how widespread the connection is to Tamoxifen. If I'm walking (with running shoes), I'm fine, but if I sit still (or lie down), my ankles feel sore, as if I'd twisted them and slipped on a rock. My knees were chronically painful long before Tamoxifen, but now they're so weak that one of them got injured just by twisting a bit to get a heavy suitcase onto a train. My tendons are always really tender too. Does anyone else feel that? it's as though my shins and IT bands and ligaments all around my knees are bruised all the time.

I'm just over halfway through with my 5-year "sentence," though I have to say, I'm hopeful that this med will keep me from getting cancer again.
TerryBos
Member

Re: tamoxifen and joint pain

I am three years in on Tamoxifen and have been told by my oncologist that yes, the arthritis-like symptoms are due to the Tamoxifen, for about 10% of patients.  My problem is arms and wrists right now, but other areas flare up occasionally, also.  I do take anti-inflammatories for pain that wakes me up at night, but I refuse to spend five years on anti-inflammatories and yoga (beginner) has helped, as I mentioned below.  I have resolved myself that this is something to manage while on the medication. 

 

I was also advised by my oncologist to see a GYN while on Tamoxifen due to the increased risk of uterine cancer (my primary physician did my pap smears previously).  The gynocologist ordered a trans-vaginal ultrasound which showed a thickening of the uterine lining.  I therefore had to have a D&C last month which I was extremely anxious about it but it was painless and easy.  Another maintenance issue while on Tamoxifen that nobody told us about, I guess...

nikky
Member

Re: tamoxifen and joint pain

So I am amazed to read all these posts about joint pain with tamoxifrn. I've been taking it for almost 2 years and am now really struggling with painful wrists, hands,fingers, knees, toes and shoulders. I have had lots of blood tests and am waiting for results. I had an ultrasound scan on my wrists and fingers last night and was told it wasn't arthritic problem.

Wondering if anyone with similar symptoms stopped taking tamoxifen and was there an improvement. Any advice would be appreciated. Got follow up with a rheumatologist on Thursday to discuss bloods and scan. Would like to talk to him about tamoxifen issues too.

Thanks in advance.
tracy2905
Member

Re: tamoxifen and joint pain

What's yellow card scheme ??
maggyblue
Member

Re: tamoxifen and joint pain

A friend who has breast cancer about 5 years ago has recommended cod liver oil and she says it works. I guess it can't do any harm to try it.

maggyblue
Member

Re: tamoxifen and joint pain

Thank you for the link to the free online yoga classes.  I started going to a yoga class in September last year and I think that helped when it came to doing the shoulder exercises after lymph sampling and WES in June this year. The oncologist said I had good movement when I saw him and I start rads on Monday. I am 65 and want to increase my flexibility. I went back to class last week but it was a bit hard in places and I didn't want to overdo it.

I have been taking tamoxifen for nearly two months and I get a really tired sleepy feeling after taking it. It is similar to the reaction I get when taking hayfever medication (with that I fall asleep within 10 minutes so I guess it is better than that).  The first week I got some really bad pains in my hands but that has gone now, thank goodness. Hot flushes are intermittant but I keep telling myself it is a worthwhile preventative.

Hazey_85
Member

Re: tamoxifen and joint pain

 
snurkle1
Member

Re: tamoxifen and joint pain

Hi all.

I am just about to start with tamoxifen and my oncologist recommended cosamin ds to lessen the pain in the joints. As I have had these severe pain in the joints since I started Herceptin nearly 5 months ago, I have ordered it and am now taking 3 capsules a day since last week. I was told that tamoxifen will likely increase the pain in the joints 😞

Obviously I can't say as yet if it helps me loads as it will take a little while for the benefits ti kick in, but I thought I mention it as I haven't seen it on here before.

CraftyT
Member

Re: tamoxifen and joint pain

Hi all,

I was in so much pain with my back hips and pelvic area I got sent for back x ray.  Everything all clear there apart from a bit of wear and tear (which is normal).  I have been told to stop taking tamoxifen for 2 weeks until I see my oncologist.  I cannot believe the difference in my back since I have stopped taking them.  I see my oncologist on Wed 22nd and will need to see if there is something else I can take instead.  My quality of life has been non existent recently.  You would not believe that a tablet could do this to you.

 

CraftyT

 

Mindy63
Member

Re: tamoxifen and joint pain

I get the cold flushes too. They are horrible. Worse than hot flushes because your whole body gets cold and goosebumpy and even though I've a heavy duvet i have to shake about to warm up at night. At least i can kick the duvet off when I'm hot!

Laurz
Member

Re: tamoxifen and joint pain

Hey there,

My mum was diagnosed with breast cancer in 2012, she went through surgery, chemo (lost her hair) & radio, she finished her treatment at the end of November 2012, she has been taking tamoxifen for just over a year now and we are reliable to hear that she isn't the only one getting pains, we never thought it could be the tamoxifen, relieved it's not anything less. She suffers with knee, back, ankle, finger, wrist & rib pains in the last few months along with hot flushes which can range from mild to severe, she also gets cold sweats. She gets very tired all of a sudden also from the constant pain she's in, don't get me wrong some days are good the pain is tolerable and she can get on with life but other days like today are bad and the pain is constant and severe those are the bad days. My mum and I just wanted to share her experience incase anyone is suffering in the same way, we wish ye all the best and if you would like to know anything else just leave us a message and we will reply as soon as possible 🙂
TerryBos
Member

Re: tamoxifen and joint pain

Friends, I just Googled "tamoxifen and wrist pain" and landed here at this discussion.  Age 54 and on Tamoxifen since April 2011, I am right in the throes of what everyone is describing.  My very sympathetic oncologist, of Anne Arundel Medical Center, Annapolis, MD, did confirm that 10% of Tamoxifen patients suffer from the arthritis-like symptoms.  I had a boot on my foot for 4 months last year for a foot problem (which took a year to completely resolve) and suffered DeQuervain's in my thumbs/wrists while going through that.  I looked like a model for those black wrist guards...with the black foot boot at the same time.  I am a 17-year teacher (out one year for BC treatment) and cannot grip piles of books or files out of the drawer any more.  I have also found that the slightest muscular "twinge" I experience anywhere in the body results in a several-week recovery period.  I was an avid hiker, 25-mile biker, and 5- and 10K walker prior to all of this so it has been extremely frustrating.  I told my doctor that I absolutely cannot and will not spend these five years of my life taking NSAIDS for the joint/wrist/hand/back/shoulder/foot pain (although he said this was fine to do). 

 

I did start doing laptop yoga at home on my floor with the free www.doyogawithme.com and have since learned that I do not feel aches and pains as long as I am doing yoga or walking (30 minute limit right now versus 90 minutes before chemo).  If I do a yoga session for hips/back before bed I do not wake up with aches and pains at night.  It has been extremely helpful and I do not take NSAIDS unless I truly injure myself and then only for a few days and it is usually my wrists and forearms that have been strained somehow.

 

I hope this is helpful to someone.  Your posts have been very helpful to me and I look forward to any other tips people have found helpful as we get through this treatment together.  *Healing Thoughts* for all of us and thank you so much for reaching out and sharing.  We can get through this!  The alternative is not acceptable.  Look at how much we have endured already!  Please try the yoga (I am only on "Beginner" level but the stretching is SO helpful) and let us know if it helps you, too! 

Magical_Moon
Member

Re: tamoxifen and joint pain

I've been taking Tamoxifen for five weeks now and, in the last week, I have developed significant joint pain in my fingers and hips plus pain in my lower back.
I am allergic to anti-inflammatory drugs so hoping the pain doesn't get any worse.
Lucy_BCC
Member

Re: tamoxifen and joint pain

Hi Crafty T
Welcome to the BCC forums where you,will find lots of support and shard experiences, our helpliners are also on hand with practical and emotional support on 0808 800 6000, lines open during the week 9-5 and Saturday 10-2

Here's a link to further support from BCC such as our 'Live chat' and 'One to one support' which you may find helpful:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

CraftyT
Member

Re: tamoxifen and joint pain

Hi there,

I have been on Tamoxifen for 8 months now, following surgery, chemo and radio treatments.  In the last couple of months I have had severe low back pain.  I have recently been for an x ray on my back and pelvic area (waiting on results) but am relieved to hear that other people have been suffering from the same things.  I am very sore when I get up in the morning and have to take painkillers to get me going.  I am just wondering what I'll be like after 5 years of this if this is my quality of life at the moment.  It keeps me from doing quite a lot and makes me really frustrated.  I also get hot flushes but they are not as bad as this back pain.

 

 

angiepops
Member

Re: tamoxifen and joint pain

hi

so when we get all this joint pain, mine being mainly in the leg/ankle dept, what do we do? carry on taking painkillers - at the moment im having cocodomol but that will have to stop. i feel like an old lady. i struggle even after a 30 minute drive to work, ankles just pack in and i cant walk properly.

is there a cure?

angie xx

Guest user
Not applicable

Re: tamoxifen and joint pain

Hi I have only just registered so may make mistakes!!

I have been onTamoxifen15months and the wrist aches are just kicking in.  If you have finished Tamoxifen have aches got better or is this just optimistic thinking?

Guest user
Not applicable

Re: tamoxifen and joint pain

I am blown away!  I have recently finished 5 years of Tamoxifen and have had joint pain (back, hip, feet) for years.  I've even had a back xray.  No-one has ever said to me it could be Tamoxifen!!  I just thought I was getting old.  I can now add this to my only other side effect (hair loss).  Not got away as lightly as I thought I had!

CazP
Member

Re: tamoxifen and joint pain

Hello,

Just dipping into this thread to check out what is being said regarding tamoxifen and joint pain to find out if it might be better or worse than what I have at present. I had FEC chemotherapy and started with joint pain between chemo and rads - weeks before I started the tamoxifen. I also found it worse during the night and first thing in the morning - my hands were sore and I found it hard to grip the duvet or pick up a glass during the night and as some of you have said it is very much a stagger to the bathroom first thing in the morning with sore hips and achilles. There seem to be so many opinions about what causes joint pain, perhaps  there are multiple contributing factors - but it certainly seems ard to know when it might improve or whether it will! I was told that it was an effect of chemo and I have to say I agree since I started taking tamoxifen only 2 days ago - will have to see if it gets better or worse on tamoxifen. Has anyone found anyhting that helps? Cod liver oil was suggested to me but too early to say if it helps.

Carol

RevCat
Member

Re: tamoxifen and joint pain

Hi Lynberi,

 

I am sorry you are having such a rough time .  I don't know the answer to your question as I have only had Tamoxifen (still on it and still with join pain).  You might get more helpful replies either if you look for a thread about aromatase inhibitors or if you start a new one.

 

Hope you get some help and relief soon

Lynberi
Member

Re: tamoxifen and joint pain

I have been on Tamoxifen for 2 years and now on Leterazole for just over a year. Initially it was just my feet that were very painful in the morning. Now I can hardly move in the morning and it feels as if all my muscles round my torso have gone into spasm. It also wakes me up in the night as I move. I usually go to ballet class but even that was difficult in class this week. I was wondering if any of the other Aromatoze Inhibiters were any better. x

Guest user
Not applicable

Re: tamoxifen and joint pain

Hi all, thanks to you all for sharing your experiences on Tamoxofin. I have been taking various forms for 3 years and only recently started experiencing hand and finger pain. I read your posts about the different forms of Tamoxofin and I cannot comment on that as I never took note of the names of the tables I took. I assumed they were all identical. My latest box however is Nolvadex-D and I had no trouble getting it from the chemist. It is due to expire in 2016. I bought it in Galway, Ireland. I think you can also get it on the internet.
Thanks again, and good wishes to all.

Carol
Mazg
Member

Re: tamoxifen and joint pain

I've just read all these posts too and am so reassured to hear I'm not on my own with the joint pain especially in my fingers and wrists. I was panicking that it was a sinister sign! Here's hoping the SEs will lessen like they did for Stella...
Guest user
Not applicable

Re: tamoxifen and joint pain

Hi there just spent half an hour reading through this thread right from beginning. Cant tell you how much it has helped me just to know that its not just me who is suffering with joint pains. I've been taking tamoxifen for 6 months - first opportunity to discuss side effects with oncologist will be at appt next month. I have no doubt that tamoxifen is causing my hips and feet to ache, especially in the mornings - never had any problems until started taking it so in my mind its a no brainer as they say.
However I am reluctant to take anymore drugs - had particularly horrible time with chemo so trying to just take my 20mg of tamoxifen and live with the side effects. I had never heard of the yellow card scheme - will fill one in now. Also just checked side effect list in Wockhardt pack - no mention of joint pain. Very frustrating as IT IS A SIDE EFFECT!
All the best to everyone who has contributed to this thread - you've helped make my day brighter. Thanks
mangochutney
Member

Re: tamoxifen and joint pain

Great to hear that Stella!
ive been on Tamoxifen since September 2011.
Ive suffered hip and lower back stiffness which Ive always attributed to the Tamoxifen but my BCN said could be after effects of Taxotere.
Ive also suffered with hot flushes/sweats and am taking Clonidine to try to counteract these. Not entirely sure it's helping but may have reduced the frequency???
i can't imagine ever feeling 100% like my pre BC self. But I'm just glad to be here with NED!! Aches and pains and flushes and all!!
if these symptoms do disappear, even better!!
Mandy xx

katytc
Member

Re: tamoxifen and joint pain

Stella, that's brilliant, here's hoping!! xx

stellam
Member

Re: tamoxifen and joint pain

Hi ladies
i have been on Tamoxifen for 3 1/2 years now and have often said that the side effects from it was by far; the worst part of my BC journey.
However the past 6 months have been fantastic, I no longer stagger out of bed in the morning until my joints start working again, or drip with perspiration up to 20 times a day, wake up constantly throughout the nights, The night cramps, numb fingers, weight gain. The list is is never ending.
I just wanted to try and reassure you all by letting you know that my side effects have more or less disappeared now and I can honestly say that Im being to feel the way I did before my diagnosis.
Big hugs
Stella x

RevCat
Member

Re: tamoxifen and joint pain

Well I am bewildered! I have always been told the link between Aromatase Inhibitors (Letrozole, Anastrozole etc) and joint pain was well established and undisputed. There are plenty of research papers covering it, including De Quervains (thumbs/wrists), achilles problems, clicky joints, arthralgia, tendonitis and tendinopathy, etc. etc. It is obviously good to get a rheumatic/arthritic cause ruled out but it really is not that rare.

Checkout the BCC leaflets, which state joint pain is a common side effect of these drugs:

ANASTROZOLE
http://www2.breastcancercare.org.uk/sites/default/files/bcc31_anastrozole_arimidex_2011.pdf

LETROZOLE
http://www2.breastcancercare.org.uk/sites/default/files/letrozole_femara.pdf
hazelmary
Member

Re: tamoxifen and joint pain

Strawberrydelight
I am on Letrozole, was on Tamoxifen for 5 years, no problem with there but on year 4 of Letrozole and having major problems with muscle spasms but like your Onc my Onc will just not accept it. He is arranging for me to have a full scan because he says it is unusual. I am 55 and was quite fit up until about a year ago but suddenly the stiffness has hit me.
Hazel

Guest user
Not applicable

Re: tamoxifen and joint pain

I used to suffer from Plantar Fasciitis, a very painful bottom of the heel. Standing after sitting is really bad. For those with sore feet, maybe get this checked to see if thats the problem. At the moment I have tendonitis in my left foot which causes great pain.
Best wishes to everyone
Jane xxx
Guest user
Not applicable

Re: tamoxifen and joint pain

I started with severe joint pain during my fifth chemo (was on Fec-T). After chemo I was given Letrazole (Femara), and the joint pain got worse. I was encouraged to take it for 2 months, but when I couldn't bear the pain in my joints any longer, I was put on Tamoxifen. That was 18 months ago, and although not as severe as it was - I'm still in a lot of pain with my feet, knees, elbows and hands. If I'm on my feet for any length of time, they burn and my left foot clicks unbearably. My knees crack and often feel as if I've twisted them. The thought of all this pain for the next three and a half years - well I'm trying to stay positive, but it's not easy.
I've talked to my GP and Onc, and they say it's not a side effect of Tamoxifen. In fact, they've said it is more likely to be my age - I'm 55. Considering I could run 10 miles 2 years ago, before cancer, and was very fit I can't agree with them. I feel like an 80 year old most days, have no stamina despite exercising though dance, and I can't stand for any length of time.
What I don't udnerstand is, how can GPs and Oncologists say it isn't a side effect, when so many people say they have these symptoms. It's so frustrating when they say "you're not getting any younger". You go from being fit and well, to feeling like you will never be able to walk or dance again, and they tell you it's your age.
Guest user
Not applicable

Re: tamoxifen and joint pain

I too have joint pain - knees, fingers, arms, legs... it started about 5 weeks after chemo finished and 3 weeks before rads started. The pain is mainly at night - and first thing in the morning my hands are so painful and stiff I can't bend my fingers.
But - my onc wants me to wait till rads are finished before going on the Tamoxifen, and I'm on no medication at all at the moment.
He thinks the pain is 'just' a sudden menopause - I'm having a blood test next week to see how my ovaries are doing.
valleygirl51
Member

Re: tamoxifen and joint pain

thanks for quick reply revcat I will head to holland and Barrett as soon as. Poss up to docs for painkillers although not really wanting to do so its hard going doing my very part time job walking around like I'm 90! Sounds bad reading my post back when I asked if you were around I meant in the sense of being on the forum lol nothing else. Not explaining well but thank you for imput I hope tamaxifen not going to stop me getting about etc!
katytc
Member

Re: tamoxifen and joint pain

An update, still am twirling around the system as they are not sure if all of the pain is due to arthritis and spinal issues maybe to blame.
Have been told I have arthritis in both feet, both ankles, both hips, both elbows and spine it's not RA because I have no swelling.
Think I was just under a year taking tam when it all started to kick in and it occurred very quickly almost overnight am still not convinced yet that the tamoxifen is not to blame xx

RevCat
Member

Re: tamoxifen and joint pain

Hi Valleygirl,

Yes I'm still around. I am still quaffing fish oil, star fower oil etc, and still taking the painkillers on prescription. So long as I keep up the whole lot, the pain is kept well under control. Once or twice I have run out of fish oil or glucosamine and have noticed the difference within a day or two. Similalry, I have had a couple of occasions when I've had to fast for anaesthetics, so could not take the pain killers, and it took a few days to re-establish good pain control.

I sympathise on the weight issue - I calorie count as it's about the only thing that seems to work.

51 is very young - only 9 months older than me 🙂
valleygirl51
Member

Re: tamoxifen and joint pain

Hi all, if your around revcat I would be interested to know if your still on fish oil,vit d etc and are you still on painkillers? I've been on tamoxifen since last November and joint aches seem to be getting worse right now. Not great that I put on weight thru treatment! Gone back to weight watchers and "behaving" but the side effects from tam could be making things worse. As I'm thinking of trying supplements would be grateful for any input.....probably my age too(51)!!!!
Guest user
Not applicable

Re: tamoxifen and joint pain

10 years? NOOOOOOO!
This is SUCH a helpful , useful thread , many thanks, all!! It's NOT just me , NOT all in my head ,NOT 'just stress',and there doesn't seem to be much we can do about it so at least I know I've TRIED !!!
Helpfully I read another thread where a brave and sweet lady w/ 2ndaries said she would put up with anything to get back to not having 2ndaries.I often think of her and it helps to motivate me.You all make it easier with sharing your feelings your generous ,caring attitudes.
Guest user
Not applicable

Re: tamoxifen and joint pain

Hi. I'm still struggling with joint pains. Have been back to the breast centre and decided to stop tamoxifen for a month-what a difference, the joint pains stopped, I could sleep and I felt so much better. However, have now gone back on it, joint pains are back but guess it's a case of just putting up with it because it's the best treatment on offer for me at the moment.
Now been taking it for two and a half years. I just wonder if the advice about taking it for 5 years will change with the result of the new ATLAS study which showed benefit in taking it for 10 years-that's along time to have joint pains and feel rubbish!
poemsgalore
Member

Re: tamoxifen and joint pain

Hi everyone
I don't know whether I am posting on the right subject. I'm not taking Tam, or any other hormone treatment, but probably will be eventually, so have been really interested in this thread. I have rheumatoid arthritis (dx when I was 36). I'm 61 now, and post menopausal, taking low dose (27mls) methotrexate once weekly injection for RA, also taking 10mg leflunomide. Missed the last injection as I'd just had Mx and sentinal node biopsy. Aches and pains are awful at moment. So, not looking forward to things getting worse when I start using hormones (cancer was es+ and pr+) Won't find out what will happen next until appointment on New Years Eve. Love to you all pg xxx
Ramsfan55
Member

Re: tamoxifen and joint pain

Hi Revcat, I have been on tamoxifen since September after aromasin stopped working. I have noticed more aches and pains lately but could also be the bone mets! I tend to get stiffness first thing in the morning or last thing at night. Also after I have been sitting for a while. My aches/pain tend to be in my neck, hips and ribs. I hope to God that it is still working x

suzanne

mangochutney
Member

Re: tamoxifen and joint pain

Hi Rev Cat.
funny you should ask about joint pain. I've suffered with hip and lower back stiffness. Not sure if its a residue from chemo or an ongoing thing from Tamoxifen. Or both!! Been on tamoxifen since September 2011. Recently it's been a lot better. However, the last few days, I've noticed myself stiffening up again. Especially when getting out of the car or up off the settee. Not sure why. Maybe because I've been running around more with getting ready for Christmas!! I don't take anything for it, as once I'm moving its ok.
Also, as you say, who cares about side effects like this, if it means prolonging our lives?
Mandy xx

RevCat
Member

Re: tamoxifen and joint pain

Just wondering how other joint painfolk are doing? I've noticed my joints getting a lot worse (both morning stiffness, tendon clicking and general aching) the last few weeks - possibly down to cold, damp weather? Would be good to know how it is for anyone else.
RevCat
Member

Re: tamoxifen and joint pain

Just thought it was time this thread was BUMPed up again as I know this is a reality for quite a few folk.

My joint pain continued to be managed with daily ibuprofen, but is I think affecting more and more joints/tendons. I am fortunate to have a supportive GP and breast team who are happy for me to take an 'acute' drug long term, but would stress, in case anyone was contemplating self-medicating, that this is under strict medical supervision as long term NSAID use carries its own risks.

How are other joint-pain people doing now?
Crabbit
Member

Re: tamoxifen and joint pain

Thank you Crabbit and apple, sorry for the abrupt ending to my last post. Had to hit send in a hurry when I realised I was going to be late for the school pick up, oops! I think you are probably right, still no doubt RADS damage.
My joints aren't as bad as they were on Tamoxifen, I just get clicky thumbs, but sometimes my wrists and hands ache and then it goes. I too agree, Tamoxifen is a fab drug. Wouldn't chooses not to.
Take care xx

applestreet
Member

Re: tamoxifen and joint pain

Hi
Well said Revcat, wise words as always...the alternative is not up for thinking about!!! Crabbit, I for one am allergic to ironing....it gives me a rash and a headache.....blame the tamoxifen....not really coz I was like that pre BC.... I do it but only grudgingly....all my kids can iron as can my OH...the only things I do are for my grandson and he's four so he's too little yet....I've just thought of another excuse...it makes my flushes worse...oooh M

RevCat
Member

Re: tamoxifen and joint pain

Hi Crabbit, I honestly don't know. The limited research refers to 'small joint arthralgia' which translates as pain in fingers, toes, wrists and ankles. The research I found, published just before Nolvadex (branded Tamoxifen) ceased production, concluded that either the cause of the pain was something in the binding agents of generic versions or there was something in the binding agents of the branded version that was protective. Unfortunately, with the demise of Novaldex (in 2010) the motivation to determine which it was vanished, and any further investigation will probably needs loads and loads of people to report joint pain and doctors to start believing it might be the Tamoxifen.

In some cases it is actually tendon pain (tendinopathy and/or tendonitis) which can be linked to the stiffness, especially first thing in the morning as evidently inactivity aggravates it. As it was explained to me, the oestrogen dip can cause the space between the tendons and the sheaths they run through to dry out, hence when we use the joints there is friction and stickiness (non technical term!) which is why the joints crack/pop and why it causes pain.

As an aside, the connection between Aromatase Inhibitors (AIs) and both joint pain and tendon problems (notably trigger finger) is well recognised. Although the chemical/pharmacological mechanisms of the two drug types is different, they both have a similar aim, so to my untrained brain it seems plausible that both could cause joint problems. Thankfully I have a breast team and a GP who believe it is the tamoxifen and treat accordingly.

There is a thing called a yellow card where people can report suspected drug side effects. I was encouraged to put in a yellow card for my joint problems, as it all adds to their awareness of potential links. You can do this at http://yellowcard.mhra.gov.uk/

For all this I'd rather be alive and well with sore joints, mega flushes and a bit of podginess than the alternative. I, for one, am grateful for the availability of Tamoxifen.
Crabbit
Member

Re: tamoxifen and joint pain

Hello, I just wanted to ask if my shoulder/ shoulder blade probs might be tamoxifen too. Always assumed it was RADS damage as on same side. Ironing begins to hurt very quickly, but sometimes I cannot put a finger on what has kicked off the pain and it just seems from nowhere. I think when I'm stressed and tense that it's worse.