Hi Kit, sorry you have the same problems as the rest of us 
From what I’m told, these side effects are fairly widely recognised with Aromatase Inhibitors (AIs) such as Letrazole, Femara, Arimidex etc. but often not acknowledged with Tamoxifen as the way the drugs work is different. As you say, we quaff fish oil and swallow glucosamine and vitamin D and so forth in the hope it helps but will never know as we fear to stop taking them.
Will be interesting to hear what your doctor has to say.
I’m still in no man’s land, being passed from pillar to post!!! Hopefully next Consultant can advise, until then it’s just pain and more pain.
I was also told that joint pain is a common side effect with Letrazole. Hope you got on fine at docs please let us know xx
saw MD today re. femara and joint pain and was told it was a side effect but was better than the alternative! true I am happy to still be on the planet but I wish there was a way of decreasing the side effects without huge amounts of pain killers. On the bright side I now have medication for my acid reflux which works. I have pile on weight but as I am eleven and a half stone the medics don’t reckon I am seriously overweight - I hate being this size though, very depressing.
well after reading ALL of this i sort of feel releived but yukky too…releived i,m not the only one who,s suffering and yukky cos i,m not the only one suffering.i,m 49 been on tamoxifen for 2 and half years…last year had bad back ache, onc was great sent me for all those tests…spinal arthritis…1st may this year got stuck on the floor with agonizing back muscle spasms…today i can just about walk on painkillers so onc is now sending me for mri…i,m still struggling into work…if i rest it hurts if i dont rest it hurts…so??..i,m glad to be alive but oh jeez it hurts and i hate it…as others have said i,m 49 not 89…
jane from liverpool
Why are we being prescribed this drug if it causes so many side effects and so much pain! Does taking it for the next 5 years really outweigh the % of getting B.C again? I have just seen an article in a magazine that someone belonging to a breast cancer trust has b.c for the 3rd time running, I do not know however, what type of treatment she was having, but I would assume she was having something?
I am yet to start tamoxifen and radiotherapy, but have a friend who had similiar conditions 15 years ago, refused tamoxifen and radiotherapy and is fine!
Hi Totally Confused,
Welcome to our little thread. Why do we take Tamoxifen? Because we trust that the benefits outweigh the side effects. Lots of people take it and never get any problems at all, others get some side effects and a relatively small number of us get joint pain sufficient to need medical intervention. For me it’s a no-brainer, withut Tamoxifen my recurrence risk is significant, with it, much less so. I think the others on this thread have a similar opinion, but we use this as a safe space to vent and a ssupport group.
I’m really glad your friend is fine, that’s great news. We all have to find our own way through and make our own choices. My rule of thumb is always ‘if I make choice X and the cancer comes back will I wish I had made choice Y’ How I answer that might be different from you, but it is the right answer for me… your answer will be right for you. And hopefully if you do get Tamoxifen you’ll get good benefit and minimal side effects.
The sound of reason as usual RevCat! I totally agree with you but for slightly different reasons. I have 3 young children and will do or take anything which is medially proven to prolong my life. I don’t even worry about the side effects, a leg ache here, joint pain there, weight gain who cares! take a tablet and enjoy the benefits of a gold standard drug which could allow you to have a very long, happy and fullfilling life!
Hi Totally Confused,
The fact is that we don’t all need Tamoxifen or AIs, but no one knows which of us does. So the risk of recurrence is reduced on average (by 40% or so?), but that doesn’t mean you or I need to take it to be OK afterwards, like your friend. On the other hand, we might be the ones it could help. I am post-menopausal and I’ve got on much better with Tamoxifen than with AIs so I sometimes go back to it. I think you should try it and see what side effects you get and how you get on with them. I don’t really understand people complaining about the side effects just from reading other people’s stories. I only started complaining about anti-hormone therapy after I was taking it and got some side effects. Actually, my main problems with Tamoxifen turned out to be after-effects of chemo (swollen legs), with Arimidex I got trigger fingers, with Exemestane not so much. Tamoxifen is also less likely to result in joint pain than AIs, although for some women it does.
Margaret
Hi Totally Confused
Perhaps another thing to bear in mind is that when your friend was diagnosed 15 years ago, the information about breast cancer and the options for treatment hadn’t developed as far as they have today.
Just as an example, my Mum was diagnosed with BC about 15 years ago and was put on Tamoxifen for 5 years, because Tamoxifen was the only drug that was available at that time. She was in her sixties and well past menopause and if she had been diagnosed today she would probably have been put on aromatase inhibitors straight away. Luckily my Mum is alive and well today. But the odds in favour of her survival might have been improved with today’s treatments. You can’t judge the impact of a drug on just one patient’s response.
Tamoxifen has made the biggest impact on BC survival rates in recent years. It is too early to tell what benefit the other drugs will have in the long term.
Having said all that about Tamoxifen, at the age of 52 I would be asking the medical people why they are recommending it. Have they tested your menopausal status? I’m 52 and have been told that once I’m definitely post-menopause then I will be switched to aromatase inhibitors.
CC x
I am in my early sixties and on Tamoxifen. I was originally presribed Arimidex after chemo and rads. After bone density scan was changed to Tamoxifen because of low bone density. It is supposed to be kinder to bones.
I have mild side effects from Tamoxifen - hot flushes and some days joint pain(could be age!)
x
Hi
found this thread through Revcat…thank you Revcat… have had bad joint stiffness with Tamoxifen but am 54 so could be an age thing as well… in a morning I feel like someone from planet of the apes…waddling about monkey fashion!! Saying this I am in agreement with other ladies, I will take whatever is offered to reduce the risk of recurrence. I have very impressive hot flushes as well…vesuvius has nothing on me… weight gain is a pain but like I,ve just said, I’ll take it all to stay in this life…seeing my onc next week and am going to mention it to her, see what she says and I’ll post it on here. M
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.
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.
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
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
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?
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.
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
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
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