Anyone with joint or muscle pain whilst taking tamoxifen

Hello, Im 31 years old and have been on tamoxifen for the past 2 & 1/2 years. I am getting increasingly worse hip and thigh pain, which I think is caused by the medication, which is starting to get me down now. It started about a year into my treatment, and has definately got worse. I feel like my hips are separating! Ive never been offered bone density scans or discussed implications of osteophorosis (however its spelt). Does anyone experience this and what response has your oncologist given? Is anyone on tamoxifen having treatment/monitoring for bone problems?

Thanks alot

Anne

Tamoxifen doen’t cause bone thinning problems. It actually has the opposite effect.It gives us some protection. It is the AI’s given to post menopausal women that can cause bone thinning problems.
The joint ache and pains could be caused by being put in an early menopause or by the hormone blocking effect of tamoxifen. You should definitely discuss the pains with your BCN or onc.

Hi Anne,

I have been taking tamoxifen for about 3 years and have been having increasing pain in my hips with shooting pains down my thighs. My BCN said that the tamoxifen shouldn’t cause it although I have heard of plenty of people on here who have had achy joints whilst on tamoxifen. Anyway, I had a bone scan that was clear this time last year but because the pain is still there and is now constant I have been sent for another bone scan and if that is clear I will have an MRI. I’ll get the results next week. Don’t want to frighten you because it is probably nothing but I think it’s worth getting it checked out. I’m 35 by the way but feel about 95!!

Hi There,

I have been on tamoxifen for 2.5yrs and seem to be getting stiffer and stiffer. My back is very stiff when getting up after sitting down and if i have been on my feet for too long it aches. when i sit down and rest it it does get better. Also i am having quite bad trouble with my right foot but not on the sole of it but the top of it. i hobble out of bed as if im 90 but im only 37. I asked the onc as she said it ws tamoxifen that is causing stiffness.

Hi
I mirror what the others have said.I started Tamoxifen just over 2yrs ago and at christmas i started getting a shooting pain down my thigh.This progressed into a soreness in my groin area,Onc sent me for a bone scan that has come back clear.However the stifness/pain has now affected the other side of my groin and leg,and walking a lot seems to aggravate it more.
I am 48 going on 98.
I want to take comfort from the result of the bone scan,but little doubts still niggle as a result of the ongoing pain.
Tracey

Definitely having a lot of joint and muscle pain, so much so have been having physio for the past year. I don’t know how much is the tamoxifen and how much is the chemo-induced menopause - probably a bit of both.
Mine affects my back, neck and ankle and foot. Elinda x

Hi
I have been on tamoxifen for almost two years and have suffered previously with not being able to sit comfortably. it always got better with chiro treatment.
This time I have been six times for treatment and it has actually got worse affecting my lower back so it feels as though a steel band is round me. I cant sit comfortably and the last visit it was suggested did I think I had cancer again as there was no progress.
I have had an x ray and am waiting to go for blood tests, I am turned 60 so it could be my age, but I feel so stiff and uncomfortable.
Whenever I have mentioned could it be the tamoxifen they seem to dismiss it.

Thank you everyone for your responses. I will definately discuss it with my oncologist on my next visit. Ive just finished a 12 & 1/2 hour shift at work, and have been on my feet most of the day, and the pain is much worse! Even got aching knees today!

Anne

I have been taking Tamoxifen for a year and haven’t had any joint pain until now. I remember someone on the Forum saying different makes of Tamoxifen can cause different side-effects and I have just been given a different one by my chemist. I have been having painful feet and wondered if it was the new Tamoxifen. Has anyone else had the same problem?

Hi Ladies

I have been on tamoxifen for 11 months and I already feel like 90 I am 45.
I was also given a different brand about 5 months after starting tablets and felt awful on them.I spoke to the breast care nurse and she said it was most likely the change in brands. I went back on the original brand and find this suits me better.
The worst side effects are aching bones, weight gain, and the hot flushes are a nightmare day and night.I was given clonidine for flushes is anyone else on these they didnt help me at all.I have just had them changed to (Megace) is any else taking these and how do you find them. I haven’t started them yet as the side effects also look like a nightmare.

Wendy xx

Hi Lyneberi,

I too am experiencing foot pain but i hear lots of ladies complain about pains in the heals and the sole of the feet but i am experiencing pain on the top of my foot towards the right hand side of my right foot. its just very stiff and i seem to hobble until i get it moving.

where is your pain?
Sukes

Hi Sukes,

Sorry to hear you are having pain too. The pain in my feet is under the balls of my feet and seem worse after walking on hard floors at work.This has never been a problem before and I’ve done the same job for the last 6 years.I did have a very sharp knife pain in the area you talk about but I thought it was from a Canula and tube that had been in there during surgery. I had Acupuncture and it really helped.
Hope yours settles down.

Lynberi

Hi Annebaker, I did a google search for Tamoxifen and joint pain and found your post. My Oncologist told me that Tamoxifen does not cause joint pain. (???) I have been on it for 2 yrs although, with a period of noncompliance in the beginning. My back, hips, hands and feet hurt. I have intermittant thigh pain and muscle spasms. Sometimes it feels as though my symphys pubis (the bone in the pubic area that expands during pregancy and child birth) feels like its moving. When I go from sitting to standing I look 90 yrs old. I find that when i retain fluid or get dehydrated it seems worse. My question is why are health care providers denying these symptoms as side effects? I’m baffled. I know of at least 2 other women personnally who had severe joint pain while taking Tamoxin. I can manage the joint pain and spasms but I would just like some validation. The list of side effects from every source that I’ve checked do not include any of these symtoms. However, every blog that I have read about Tamoxifen causing joint pain contain numerous entries to the contrary. I love my oncologist and trust her but sometimes I think “where is the disconnect?”

i am on tamoxifen and get stiff ankes/sore feet when i get up on a morning, they have stiffened up. once i get walking it goes off quite quickly. i am on zoladex as well though so not sure which one is having what effects. regarding the tamoxifen and bone thinning, i have read on some literature (not sure if it was this site or macmillan) that it does have positive effect on bones on menapausal women but opposite on pre-menapausal. i am on zoladex as well which definitately does have affect on bones and i have dexa bone scans. i am premenapausal by the way.

TTM

Hi
I too suffer with bad joint pain from tamoxifen, I am also on herceptin so not sure which it is from. I’m sure it’s from the tamoxifen though. I am pre menopausal. I too look and feel about 90 when getting up from a sitting position. My hips, knees, back, ankles and fingers all hurt. Worse in the mornings of have been sitting. I have been on tamoxifen since October and was hoping it would ease over time. It’s no coincidence if we all have these side effects.

Thanks , RevCat - your post came up same time as mine , just saw it.Is all that Ibuprofen safe w/ your liver or is it Paracetemol that causes problems there?

Hello ladies, I don’t know if you are aware of it, but there is a much ‘newer’ thread in joint pain and Tamoxifen here:
http://www.breastcancercare.org.uk/community/forums/tamoxifen-joint-pain-0

There is a (potential) link between Tamoxifen and small joint arthralgia that was demonstrated by research in 2010. Long story shory, for 30 odd years Nolvadex, the branded form of Tamoxifen, was used with no joint problems reported. Introduction of generic forms and it began… ranging from morning stiffness to severe arthralgia (just means joint pain), tendinopathy (means sore tendons) and tendonitis (I had De Quervain’s tenosynovitis in both wrists and one achilles tendon was painful). The research concluded that EITHER there was something in the binding agents of the genenrics that caused the pain OR there was something in the binding agents of the Nolvadex that protected against it. As Nolvadex is no longer available this does not seem to have been pursued. I am lucky to have a breast team and a GP who believe in this effect, and here is the concoction I take daily on their advice…

400mg ibuprofen (prescription) 3 times a day (roughly 8 hour intervals)
Omperazole (prescription), one a day to protect my guts from the ibuprofen long term
1500mg glucosamine (I use veggie version as I am intolerant to shellfish)
Star flower oil - one capsule daily
Boots joint health fish oil with Vitamin D (liquid; the strongest I’ve found) 2 x 5ml spoon daily (I mix it with ornage juice to disguise the taste)

I have been told that I can have ‘stronger’ NSAIDs if needed.
I can’t say these work perfectly, but if I miss any of them, I sure notice the difference.

If you look at the other thread, you should find the link to the research, which you can show to your team/GP and see if they are happy for you to become a pill popper. To be fair, the level of joint kn*ckeration I get is rare… but I still climb hills and walk everywhere.

So it’s NOT JUST ME!!! 2 yrs on Tamoxifen and, just like so many of you say ,I look and feel 92. I’m sorry for you all yet I confess your pain has made me feel better about mine!
Tamoxifen definatly messes w/ your fluid levels- they make veiled comments about constipation and say the regulation weight gain of min 10 lbs is '‘only fluid’.
Oestrogen is connected to anti-inflamatory action in the body. And something I didn’t quite catch about Ligaments…SO! I reckon it’s inflammation around non-stretchy ? or too stretchy ligaments ? that causes the pain - Not technically ‘‘Joints’’ but in the Joint area.
I take 3(revolting )fish-oil omega 3’s . This does help but I’m a still a wreck . Sadly veggie options wont work as they are ‘Short-Chain’ Omega’s (?).Avoid Omega 6’s so that your Omega balance is in favour of anti-inflamatory effect.
The fatigue (also a side effect) discourages exercise but we realy need to keep moving . Does anyone use Yoga? I’ve never tried it.
Headaches are also an SE .I have back/neck problems from years of heavy lifting -what Mum doesn’t? I need to know what causes them to find a med to help…the GP has me randomly trying migraine tablets - awful!! So far the only reliable treatment is Lidl’s Cava.
Older ladies promise that this too shall pass once the 5 years of Tamoxifen has passed. But then those of us around 50 will go into ‘proper’ menopause and get it all again!!!

To save everyone having to plough through the other thread (if you don’t wish to) here is the link for the research:

Thanks RevCat ,your post came up same time as mine so didn’t see it-really helpful