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Anyone with joint or muscle pain whilst taking tamoxifen

39 REPLIES 39
Marian27T
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I think tonic water no longer has quinine in it.  It says aroma of quinine, or something like that on the bottle.

ann-m
Community Champion

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hi Stefany

Sorry to hear about your current symptoms. You say you have completed radiotherapy, was this recently? as I'm sure you are aware, tiredness & fatigue is also a side effect following rads, so this is probably not helping, but should resolve more later on.

Is fibro - fibromyalgia? as if you have been off your usual treatment, so as you say, this may not have helped either.

You have been through a lot, so in some ways it's not surprising you feel the way you do currently.

Most women are fine on tamoxifen, or at least find any side effects manageable & am stating the obvious here, but see what your dr thinks, if you haven't already.

take care

ann x 

ann-m
Community Champion

Re: Anyone with joint or muscle pain whilst taking tamoxifen

hi aosteam,
Please do be aware that surgery is one of the most effective ways to treat bc, yes, its scary - we've all been there, but when it comes down to it, the bc needs to be removed to get the best outcome.
There is no evidence that alternative treatments can do the job of conventional treatment & there is a lot of 'woo' out there. Obviously, some alternative treatments are fine to use with conventional treatment & if it makes you feel better then great, but do take advice from your wife's team.
take care
ann x

Tasweeka
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Oh, yes indeed. Screw this stuff!

 

I was on Exemestane prior to this, which damaged my thoracic bone marrow within 3 months of taking it according to a recent MRI. I have 4 degenerative discs there and was soon literally incapacitated by bone pain. I threw the rest out and felt great within 2 weeks.

I agreed to try Tamoxifen but only one month in, I am getting spasms again in my thoracic spine, as well as a return of the bad pain at the base of my spine, radiating up to my waist. I see the oncologist on Monday. If there is any benefit to trying a month on and a month off I willl give it a shot, but otherwise, it goes in the garbage with the other drug.

 

I have been in pain from my spine for 25 years( I'm 63), am now on pain management, which helps a lot, but no way am I going to tolerate any more pain than I am usually in. I would rather feel well and not live as long, than feel like I am dying every single day and live a long time.

 

I also quit chemotherapy due to severe side effects. I did do radiation, but

Sheilan24
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I am on year 4 of 5 on Tamxiofen and for the past week my left knee has been hurting. I am scheduled to see my medical oncologist for a follow up today. Do you have any suggestions on how to relieve the pain. Ibuprofen is not working for me.

kerrie
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hello, Im almost 43 who had oestrogn and progrestrone positive and Her negative breast cancer. Ive been on tamoxifen for about six weeks now and have had a lot of joint pain but mostly really painful muscles on my weaker side.My left side has been so weak and the hip pain dreadful but my physio says its muscles. I have CFS too and i think the chemo has made it worse as my brain  has been so fogged and unable to cope with anything. Now four months after chemo ended the fatigue and fog are clearing. Being in the sun and exercise everyday has helped me with the CFS. I havent had any fibro pain. Do stay on the tamoxifen- it is so important to stop the oestrogen which feeds the cancer. Im having a complete hysterectomy too hopefully next month! Hope you're doing ok.

Chinchy101
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I know I may be late, but I have been on Tamoxifen for a couple of moths now and ive already began to feel the side effects of it (joint pain/stiffness in my knees and muscle soreness) ;however, the medicine is meant to block the hormone activity that caused the tumors to develop and grow....it WONT remive the cancer. She needs to follow her surgeons recommendations and have thw surgwry to removw the cancerous cells. I had two tumors jn one brwast and elected to remove both breast.
rhonda47
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

My Australian brochure on side effects 4 tamoxifen list joint and muscle pain. I am now experiencing the muscle pain mostly in my lower back but also upper arms and other areas after 12 months on a generic brand of tamoxifen. I'm taking a muscle relaxant (magnesium phosphate) which is relieving the problem quite well after about 11/2 hrs
rhonda47
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I've been on tamoxifen for just over 12 months with no problems until the last month and now I am getting a really stiff back in the morning, feeling it as soon as I leave my bed. Walking and stretching exercise does help it but now that it's getting worse I am taking a muscle relaxant in the form of magnesium phosphate and that is really relieving the stiffness and the pain. I hope this might be helpful to some other sufferers. I was interested to learn about The generic difference with tamoxifen. Rhonda
Stefany Bernardo
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I am  45 year old BRCA negative patient who just went through a lumpectomy and 6 weeks of radiation.  My cancer was est and pro positive and I started taking tamoxifen 7 weeks ago and feel awful.  On top of that I have CFS and Fibro and had to go off of cymbalta.  My current symptoms are extreme fatigue and weakness especially on my right side.  I thought it was being off of the cymbalta that was causing my decline  but now I'm not so sure.  I am having a complete hysterectomy at the end of this month.  I am going to go off of the tamoxifen for a week and see if the fatigue and weakness subsides some.  Any other recommendations?  I'm not sure what else to do.  I am a pediatric PT and find it really difficult to treat and work with the way I feel.  My cancer had micro mets and no chemo was needed.  I am also on a plant based diet.  Please help.  

caronsal
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I was on tamoxifen for 12 weeks and just this week stopped taking it due to side effects. My concern was if these are the side effects I can see what are the side effects I can’t see and what are the long term effects on my body. That concerns me. I understand your wife’s stance. There has been much research done on natural ways to reduce or eliminate cancer (if that is at all possible). I suggest looking up natural solutions to cancer treatment. There are some great sites out there to research and a wealth of knowledge. Though you do need to choose a direction that you are both comfortable with and that varies with everyone (my husband if he were me would stay on the medication where I am choosing to try an alternative natural method). Also there are many foods and spices such as turmeric that are historically known to reduce cancer cells. Start your research and see where it takes you. Good luck and stay positive….that is half that battle for both of you!

 

aosteam
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hello Everybody,

Is it possible for the cancer to go away with Tamoxifen and Zoladex alone.  My wife has been on Tamoxifen and Zoladex for the past 6 months and the cancer has decreased 30 percent. But, the doctor insist that she will have to go through masectomy as she has two lumps in the breat. My wife just doesnt want to go through surgery. She is 36 years, I also wanted to know what are the chances of her to get pregnant after she get off Tamoxifen and Zoladex.

Thank you in advance.

Helm
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I've found drinking a small can of tonic water every day (or whenever possible) helps with joint pains - apparantely it's the qunine in it. 

ruths
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hi, funny thing is that I am on year 4 of 5 taking tamoxifen and over the last two months I have had knee pain only in one of my knees, it comes as quick as it goes.  The first time it started was two months ago and it lasted for two weeks the last time was 3 weeks ago and it just eased off 4 days ago.  I have been referred to a consulatant who checked me out and cant find anything obvious wrong with my knee, so I have now to go for a MRI scann next week.  But its funny how so many of us who are taking tamoxifen have almost the same issues.

impatiens
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hi revcat

 

I'm not sure if you're still active on this site but thanks very much for this posting, I have had a very bad stiff neck for about a year and only recently realised it could be the Tamoxifen. I get a bit of pain in my ankles but I think I've been lucky with the side effects. The recipe of various supplements and drugs is very useful, I'd read about glucosamine but didn't know how much to take. I'm going to try this. I thought I wasn't able to take Ibuprofen with Tamoxifen so that's a bit confusing but I'll phone my BC

 

Thanks 

 

Alison

SamLee
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Just happened to see this post. I know it is probably not much help to most people, but in terms of obtaining Nolvadex, you can get the oroginal from overseas. I had horrendous side effects with the generic ones and whilst searching online (yes, I know you shouldn't) I came across a Swiss company where you can order through. It is the original Nolvadex manufactured in Cheshire by ICI Zenica (or whatever they call themselves these days). It isn't cheap at $60 per month but for me it is worth it. BUT I am in a fortunate position that I can afford it - its ridiculous that it isn't available in the UK anymore.

RevCat
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Hi Moya, that's correct - it is no longer possible to procure Nolvadex, at least in the UK; only the various generic versions are available.
Moya
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

Thanks for the link, Revcat. Has anyone been able to get Nolvadex recently? I thought I saw something a while back that it was no longer manufactured.
Moya xx

hazelmary
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

I was very interested to hear that Oestrogen is connected to anti-inflamatory action in the body because although I didn't have any problems with Tamoxifen I am sure having problems now I am on Letrozole, now on year 4 of 5.
About 5 weeks ago I started getting what I call muscle spasms in my back, went to GP, put on dizapam and painkillers, worked okay, had a week off work. Then 2 weeks ago had another episode and the only think that really helped was walking so every morning I went for a walk before I went to work.
I am on holiday this week and started doing a bit round the house and suddenly I start getting spasms, tried to walk it off, didn't really work, had very little sleep last night worrying about having more spasms if I moved in bed. Luckily I have managed to get an appt this afternoon to see GP and am seeing Onc tomorrow for annual checkup.
If it is due to lack of Oestrogen which shows the drug is working its not going to go away soon.

Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

Interesting. thank you Revcat.
Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

http://www.ncbi.nlm.nih.gov/pubmed/20347307
Guest user
Not applicable

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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!!!!
RevCat
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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.
Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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?
Guest user
Not applicable

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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.
tommyticklemou
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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?"
Lynberi
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

Lynberi
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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?

annebaker
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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.

elinda45
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

anxious
Member

Re: Anyone with joint or muscle pain whilst taking tamoxifen

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

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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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.

Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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!!

Guest user
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Re: Anyone with joint or muscle pain whilst taking tamoxifen

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.

annebaker
Member

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