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tamoxifen and joint pain

laney66
Member

Re: tamoxifen and joint pain

I've been on tamoxifen since 2013.  Only recently has the joint and muscle pain been close to unbearable.  I suffer from night sweats multiple times a night as well.  My ankles are locked up in the morning and I practically fall out of bed.  I have numbness and nerve tingling in my left foot.  The muscles in my hands and feet are constantly cramping up.  I was worried that I have RA or MS or something, but maybe it's the tamoxifen?  My onco seemed doubtful, said it was more likely menopause.  I've had two low grade IDCs, one in each breast, one of which showed up while on tamoxifen in 2015.  She wants me on the drug until 2020.  I don't think I'm gonna make it.  I'm gaining weight from the lack of exercise.  I used to love to go for long walks, but it's difficult to do when my foot feels like it's burning or has a tourniquet on it.  Herbal remedies have been exhausted.  NSAIDS only take the edge off.  I'll try drinking more water.  Any other ideas? 

FaithHopeTara
Member

Re: tamoxifen and joint pain

I feel everything you feel. I just keep praying. Have you gotten any better?
Jill1998
Community Champion

Re: tamoxifen and joint pain

Hi Lisa,welcome to the forum.Sounds like the Tamoxifen has not been kind to you ,alot of ladies make the decision not to continue with the meds as they affect their quality of life so badly, but it's a very hard decision .You need to discuss with your Onc what your percentage gains are from the Tamoxifen and weigh up the pros and cons.Let us know how you get on .Jill.

Lisa123
Member

Re: tamoxifen and joint pain

I have been on tamoxifen from 2012 and was initially told 5years but at last years review with my oncologist he recommemded that I stay on it for another 5yrs. For the most part I have had the hot flushes, łów sex drive and joint pain (but not severe). However the 

last 6months my pain Has taken over my life. Im on słów release tramadol and GP just says they think its side effects from the tamoxifen. Pain is worse in hands and feet but generally my legs and arms are sore. At the moment I'm managing to go to work and thats about it. Other daily tasks are too sore. Housework has to be done room at a time as my hands start to cramp up. Ive had to stop my Pilates because my feet were crampimg so badly  throughout it that it was too painful to do and im unable to go out walking which I always loved to do. Im due to meet my oncologist next week and I am hoping for some answers. My GP has referred me to rheumotologist but has warned me that the waiting list is very long. I cant socialise as the pain becomes  s too bad so I very rarely go out bar my work which Im struggling with nów too. Ive  become very down recently because I feel that no one is giving me any answers. I dont Want to keep taking strong painkillers.

Debscrivens
Member

Re: tamoxifen and joint pain

Thank you for that il let you know how I get on with oncologist and bone scan xx

marydan
Member

Re: tamoxifen and joint pain

Debscrivens, I have been on tamoxifen since september. I have multple sclerosis also so it is very hard to know if it is the tamoxifen or m.s causing my severe lower backache.

I had a spinal and brain mri in Dec and there are lesions on my spine, which my neuro reckons would cause chronic back pain.

My oncologist said the tamoxifen would cause joint pain so try  your best not to worry too much.

I am back at work part time just now and have cried some evenings thinking I cannot do it any more but hopefully it will pass and we will all be us again. Mary xxx

Debscrivens
Member

Re: tamoxifen and joint pain

Hi everyone I was hoping from some advice on tamoxifen, I was diagnosed with invasive lobular cancer in august had lumpectomy and 3 lymph nodes removed thankfully it hadn't spread into nodes , started on tamoxifen in November , had daily radiotherapy for 4 weeks which just caused fatigue and a burnt boob , my last week of radiotherapy I developed deep muscle and bone pain all over my body which has steadily got worse my gp has prescribed various pain killers and now I'm taking morphine 60mg slow release tablets twice daily and oramorph four times daily , the pain relief is taking the edge off it but not taking it away I hate pumping my body with all these drugs 😢I'm seeing my oncologist next Friday and they are doing a bone scan has anyone else suffered like this I can't do anything like I used to before cancer , I would be up every day at 5am see my husband off to work then do the housework and prepare our evening meal before going to work on a 8-8 shift as a manager I often ended up bringing work home yet still had the energy to do normal things , now all I do is maybe wash up and that leaves me in agony!! I just want to be me again 😊 Sorry for the rant ladies any advice would be brilliant xx

ALE2017
Member

Re: tamoxifen and joint pain

I have been taking Tamoxifen since May 2016 after my bi lateral mastectomies. I told my oncologist that puberty didn't start over night, so I sure as hell am not going to throw my body into the menopause deep end. I started taking half a pill every other day until November, there I promised to take a half pill every day.At that point the side effects I noticed was I got my period every 20 days (not 28), and the periods were lighter and lasted 3 days. I did experience some lower back pain, but that is gone. I take a whole pill every other day as taking half a pill a day was hard to manage (I would rush and forget to take it). I have noticed some numbness in my right shin and I get foot cramps frequently. As far as skin and hair, I take supplements like biotin and use nioxin scalp treatment to keep the hair healthy. I also take krill oil, D3, and Tumeric. And as far a sexual side effects, I don't chance it -even if i feel lubricated, I use lube, lots of lube. My gyno put me on estrace cream, it is local into the vagina and has very low absorbtion into the rest of the body so it doesn't go against the tamoxifen. All in all I feel pretty good with the regimen I am doing now.. I seriouly doubt I will ever take the full dose. Out of the testing of my cancer and surrounding breast material the scale of 1-50, 1 being no reoccurance- 50 highly likely to reoccure- mine was a 5... You just have to do what is right for you, your health, your quality of life. I was lucky I didn't need chemo or radiation. I was really lucky...

marydan
Member

Re: tamoxifen and joint pain

MemaTerry. I have been on tamoxifen for 4 months now and my lower back is incredibly painful.

I have multiple sclerosis and have just recently had a mri of spine which thankfully did  not show up anything too sinister but did show some lesions.

 I think the aches are defo due to tamoxifen. xxx Mary

MemaTerry
Member

Re: tamoxifen and joint pain

Thank You Ladies for your thoughts and I will check into that with my PC.

Blessisngs to all of you.

Happyboobs2
Member

Re: tamoxifen and joint pain

Hi, I am on Letrozole and have been prescribed minoxidil(Regaine) by my GP as my hairline started receding. It has helped.
Jill1998
Community Champion

Re: tamoxifen and joint pain

Also known as MINOXIDIL
Jill1998
Community Champion

Re: tamoxifen and joint pain

Hi Mema lots of conversations on this site about Tamoxifen and hair thinning ,if you search those key words you will bring them up .I have been on meds for 20 months and hair thinning has been quite noticeable and also my hair has become very coarse ,I have tried various shampoos but nothing helps significantly I'm afraid .Some ladies have been prescribed Regaine by GP may be worth looking into .
MemaTerry
Member

Re: tamoxifen and joint pain

Hi Ladies,

I'm from US and I have a few questions about the side effects of Tamoxifen.  I'm hoping that you will be able to help ease my crazy mind.

 I've been on Tamoxifen for 3 1/2 years and the first side effect was thinning hair.  My doctor told me that it wasn't related to the meds.  I have done a lot of reading and everything I've read supports hair loss.  But, I also color my hair every 4 to 5 weeks, (I went gray very young).  The thinning, although, I take 10,000 mg of Biotin daily and still apparent and now the texture of my hair has changed.  I thought that it was from the color, but after talking with my hair stylist, I'm not sure.  She said that the color will help to soften my hair, but that the more gray we cover and the meds will change the texture.  She advised me to try a forum and ask my question(s).  Do any of you professionally color your hair and have you experienced a change in the texture?

My hair loss is bothering me and my husband and I are thinking wigs.....perhaps.

I also have Fibromyalgia and I experience body aches on a daily bases, so not sure which one is creating the pain.  I took myself off those meds BC I have been on them for about 15 years and I'm not realy feeling any hep from them at this point.  Just uncomfortable everyday.

Any insight, thoughts, suggestions will be greatly appreciated.

Thank You

MemaTerry

MysteryMouse
Member

Re: tamoxifen and joint pain

I just wanted to say that I have been on Tamoxifen for 2 years and apart from hot flushes (which are perfectly manageable) I haven't had any other problems at all. I read all the scary side effects before starting Tamoxifen too and was worried before starting.

 

I am now about to change over to anastrozole and have worried myself again with reading all the side effects however please remember that most ladies who don't have any problems and are fine don't post on the forum!  🙂 🙂 (Just need to remind myself of this)!!

 

MM

xx

 

 

 

RosieFlower
Member

Re: tamoxifen and joint pain

I used to take it about midday, but suffered disturbed sleep, so BC nurse suggested taking it in the evening, which i have done for past 2 weeks, and sleep is better.

 

It's so difficult to work out what's going on and what helps isn't it! Is it the radiotherapy fatigue subsiding, body slowly recovering from chemo bashing, settling down on Tamoxifen, disturbed sleep, going back to work and the list goes on and on!

Think its a case of day by day at the mo for me, but begining to believe that alcohol seems to set me back - so now that the festivites are over, and that Dry Jan is here, fingers crossed a better month ahead!

RosieFlower
Member

Re: tamoxifen and joint pain

Thankyou both for your advice. I will certainly be going to the chemist to see what they can order in. I'm on Teva at the moment, will perserver for another couple of weeks after upping my fluid levels and then see if worth trying a different brand

Thanks again

Pollyp
Member

Re: tamoxifen and joint pain

Rosieflower
Ditto everything ladybowler says except my brand is mylan.
Not quite mastered the constipation part yet without the help of lactulose but hope now rads finished and more hydrated things will improve. 🙂
RosieFlower
Member

Re: tamoxifen and joint pain

Oh DenGill i can really empathised with you. I started tamoxifen about 8 weeks ago, after surgery, chemo and radio, and the muscle pains and joint aches have been worse than i imagined. I have had 3 sessions of acupuncture as at my wits end with tight calf muscles and tender thigh muscles  (which makes sleeping on my side difficult) which has helped (but very expensive and not a long term option!) , but my upper arms feel like i've gone 10 rounds with Mike Tyson and my feet are so sore and achey.

 

Looking for advice about other brands of Tamoxifen as well, as wonder whether its time to change brand but my GP was unaware of anything other than Tamoxifen. Can anyone let me know what the other brands are called and what experience others have had with changing - as unsure better the devil you know than you don't!

Happy New Year to all

DenGill
Member

Re: tamoxifen and joint pain

I'm sorry you are having so much difficulty but it's nice to hear I'm not the only one.  I had been on  Tamoxifen for a year with just the odd night sweats. Then suddenly my calves went tight continuely,  I exercise and walk 6-10 miles a day, so I thought I had over done it. Then a few days later started with shivers, sweats, sore throat, light headedness, sore tongue. OMG after changing training shoes, increasing water levels, changing moisturer ( I know it's mad, but I was desperate) blood tests galore, MRI on my spine and my doctor requesting an appointment with a Rheumatologist ( which I haven't had yet) my Onocologist said it was the menopause made worse by tamoxifen. A blood test confirmed this. My GP laughed at this suggestion, he is a man.

For the last 3 weeks I was improving and feeling normal again. Then, bang the other day back to square one. Started thinking it was something else again, and now I have seen your post I realise it is tamoxifen and hormones. Is it sad to say I am sat her crying.  Its the muscle pain, weakness in my leg muscles and pain in my feet which is really bad. I am normally mentally strong and I feel weak. I know tomorrow I will probably be back on the ball again.Sorry for the moan but you will know how I feel and I feel I can't moan to close family all the time otherwise I would be at it continuely. 🙂

pammyw
Member

Re: tamoxifen and joint pain

I have had major joint and feer pain and stiffness getting out of a chair. I hve been seeing a counseller who looks at the whole body and mind. She told me to drink 3 to 4 pints of water . First thing in the morning i have half a pint of water and then half an hour later another glass with lemon juice. After 2 -3 weeks I am pain free. No painful feet or getting out of bed like a 90 year old. I am honestly amazed at the difference it has made so i felt that I needed to share it. Xx
msshell
Member

Re: tamoxifen and joint pain

I have been on tamoxifen for almost 3 yrs. Reading some of these stories of side effects are scary. But I am one of the few that has done gd on it so fa . Other than hot flashes,no major issues. Don't go by what you hear, it may be different for you .
ann-m
Community Champion

Re: tamoxifen and joint pain

Hi Emma,

Try not to be put off before you try it, understandably, those having problems will report it, many women are fine on tamoxifen or at least find it manageable, certainly not hideous.

Most of us are getting on with life as usual, back working full time, travelling etc - but this doesn't tend to get reported.

ann x

 

Emma111
Member

Re: tamoxifen and joint pain

Is being on tamoxifen hideous for you 24/7? I'm supposed to start soon but this puts me off. Is everything awful all the time? I thought chemo was hideous but the thought of tamoxifen feeling like on chemo for 5-10 years beginning to wonder if worth my bother at 38 if no quality of life til I'm around 50!! Are you able to work and go out the house at all?
Pipstop
Member

Re: tamoxifen and joint pain

Hi Diane,

You are not alone. Sounds like you were diagnosed about same time as me, so like you about 18 months into Tamoxifen treatment. Joint pain didn't start immediately but after several months.stiff sore hands and feet, but knees probably worst. Very sore by the evening, enough to find it hard to stand up out of chair. Trying to keep active, take ibuprofen and omega oils but it is unpleasant and nothing seems to make much difference.Not sure how long you will be on tamoxifen...trying to console myself with the fact am past halfway mark with it now. Am sticking to non weight bearing exercise.. cycling, swimming. Don't give up on the exercise...it has to help in lots of ways.......

Najat
Member

Re: tamoxifen and joint pain

Hi 

I used to scream from my leg cramps, my husband told me to drink a lot of water all through the day, and it disappeared. 

Try it and good luck

Najat

marydan
Member

Re: tamoxifen and joint pain

Hello all you great people, I had rad 4 of 19 today and so far so good, I know its early days but trying to remain optimistic it will continue lke this. The drive in every morning is the most daunting so far, traffic crazy but I just keep telling myself its my work for next month and thats how I deal with it. I started the tamoxifen (TEVA) a month ago they were the tabs given to me by oncologist and have just uplifted my next pack wgich is Mylan. Will this matter, sorry I know a woman my age should be able to work it out but brains a bit all over the place ust now. One more question and I promise I will stop. Has anyone suffered lower back pain when on this tab or it could be ms related. Thanks guys xxxxx hope u all as ok as u can be untik this blip is over xxx

pammyw
Member

Re: tamoxifen and joint pain

You too xx
diane10
Member

Re: tamoxifen and joint pain

Thank goodness I have found this thread. My oncologist said that toxic em doesn't cause joint pain but I'm in agony nearly all of the time. My feet hands and knees are the worse but also have problems with shoulders which feel like they have popped out sockets. I was a marathon runner before cancer, a keen hill walker and I can't do any of this anymore. I'm miserable and really feel like stop taking the treatment and take my chances. I think back to the day I was diagnosed when the consultant said the treatment would have little impact on my life. 18 months later and my life has changed completely. Am forever I'll with various infections and whilst I am not sitting around moping and trying to carry on as normal I hate that nothing is normal. Sorry for the moan - sounds like I am far from the only one
lorac170
Member

Re: tamoxifen and joint pain

Tammy  - nothing wrong with your sense of humour! Tee Hee - very funny. Take care & all the best, Carol x

pammyw
Member

Re: tamoxifen and joint pain

Hi Lambro1

 

Totally sympathise with every thing, exactly the same and my fingers and toes lock out. As I get out of the car it felt like my legs have turned to stone and i have to hobble until they came back to life. The bottom of my feet feel like i am walking on bone. I am going to get in touch with the breast nurse hopefully this week,  I feel torn between staying on it against the risk og the cancer returning.

 

This reminds me of myself until i get going. only FAT! xxx

https://www.youtube.com/watch?v=pF_Fi7x93PY

Jill1998
Community Champion

Re: tamoxifen and joint pain

Hope you get it sorted,they may suggest you take a break from it for a few weeks to see how you feel.Have you tried experimenting with different brands ?
Alewis
Member

Re: tamoxifen and joint pain

Thank you Jill I'm of to doc about bleeding and seeing my consultant next week I just want to feel me again I'm really struggling X
Jill1998
Community Champion

Re: tamoxifen and joint pain

Hi A, sorry you are having such a miserable time.you really should get checked out by Onc re bleed in particular , re the other symptoms there,may be something they can do to helpJill.
Alewis
Member

Re: tamoxifen and joint pain

I am the same can't climb stairs keep falling over cant hold anything and to top it after me thinking I had gone through the change early as not had a period since last June when I had my second chemo I've now started to bleed and am so much pain I just want to cry I'm 41 with three young children and I feel like 90 plus the heart beat seems to go really high at times
Jill1998
Community Champion

Re: tamoxifen and joint pain

Hi Lambo,have you tried different brands of Tamoxifen?Some people find the side effects are a lot worse on some than others .
Lambo129
Member

Re: tamoxifen and joint pain

Hi not posted in this forum before but looking for some help.

 

i started on tamoxifen in January this year and I can cope with the weight gain but I'm struggling with the muscle and joint pain.  I'm like a 90 year old who has run a marathon and it seems to be getting worse. My knees and hands seem to be the worst but even pain killers don't seem to help. Im taking gabapentin and also try dyhydrocodeine but nothing seems to help. Im OK if I'm on my feet and keep moving but as soon as I sit down the pain is really bad. I would appreciate hearing other people's story and any advice X

Angelmum72
Member

Re: tamoxifen and joint pain

I'm new to this forum - have tried to find out how to pm you , I'm from Woodlaithes near wickersley charlotte
kellie.graham
Member

Re: tamoxifen and joint pain

I had breast cancer surgery in 10/2014 and started Tamoxifen 1/ 2015. Due to severe hot flashes, leg, feet and  hand cramps, I am attempting to stop taking it before it causes any long term damage. Does anyone have any information on natural pathe remedies that helps with the cramping?  

Geverline
Member

Re: tamoxifen and joint pain

 

I had tamoxifen in 2006 and again in 2007.  My hands are numb, lower back pain, had surgery for stenosis, legs pain, back pain still persist.  Legs burn and joint ache along with knee pain. I drop things and will trip easily.  I walk in grocery stores with a basket for support.

 

Good to know others are experiencing the same ailments and it not in my mind

Barbie40
Member

Re: tamoxifen and joint pain

Hi ladies

Rosielea I can relate to yr symptoms. Flushes, joint pain n stiffness but particularly the numb hands at night. I've been on tamoxifen for 2 years but for a few months now I have been waking in the morning with numbness in hands I also have a sore stiff neck.

I wonder how common this symptom is cos you are the first person I have heard of having it.

X
Sixtwootk
Member

Re: tamoxifen and joint pain

Not used tp bones popping with no effort.
Rosielea
Member

Re: tamoxifen and joint pain

Hi Dancing Nancy,

Thanks for posting & hope you are getting on well following reconstruction.

 

I've also been having similar symptoms to yourself, joint pain, stiffness, numbness in hands at night, poor memory & eyesight is also worse. just wondering if you've found out the name of the more expensive brand of Tamoxifen/Tam alternative that your Onc mentioned and whether you've tried it yet?

 

Ive only had 2 months on Tamoxifen so far and have had problems getting prescriptions, submitted last request 3 weeks ago, should be ready to collect within 5 days and still not in today! Ran out two weeks ago and have to say more joints seem to be aching and sore, especially hands, elbows and shoulders, bit of a bummer as I'm a potter and a lot of my work hurts at the moment. Popped into supermarket today after mammogram and carrying basket for 1/2 hr left me with a very sore stiff elbow. I've tried ibuprofen and paracetamol but they don't help. Wondered if it was due to after effects of radio & chemo but strongly suspect the Tamo and wondered if a different brand might be better.

 

gentle hug to you

 

Cavills
Member

Re: tamoxifen and joint pain

Hi joining in with this thread as I did take tamoxifen for 5 yrs with only weight gain as a side effect, I know unbelievable I honestly thought it wasn't working  properly!  Anyhow 6 yrs later I'm on Anastrazole due to secondaries  but the depression and pain have been awful. I've been on it for 6 years now and have complained on deaf ears to my bc nurse and the oncs so I made the decision to come off for a while. It's taken 6 weeks for my mood to lighten , I was on the verge of suicide,  and the relief from the constant pain is very welcome I was on morphine for this!  Now as I had an oophrectomy as a precaution due to hormone receptive cancer I'm hoping that this will see me throgh a few more months of normal life,  any thoughts?

 

Amanda Wright
Member

Re: tamoxifen and joint pain

HI, I have been taking tamoxifen for 1 month and feel awful reading everyone's comments has made me feel like it's not me it is the tablets.

Thank you kindly

Take care

dutch
Member

Re: tamoxifen and joint pain

Further to my previous posts, I am now on fareston after having a 6 week break from tamox. The hip and back pain gradually improved over that time (don't expect immediate relief!) And although there is still some soreness in the morning, I'm happy to say it is no longer impacting on my everyday life. Have been on fareston for about 3 weeks and so far so good. I am convinced that tamox was the cause of my pain and the only advice I would give is do not give up talking to your specialist about alternatives to this drug. I have also taken up yoga which has also helped. All the best to you all ☺

riversidedawn
Member

Re: tamoxifen and joint pain

I found relonchem to be best for me - teva gave me really bad flushes.

After complaining about fatigue, joint pain and weight gain, my team organised full bloods, CT scan, bone scan and spinal MRI. All came back inconclusive so have to repeat full body MRI next month.

I agree that quality of life is so important, I'm on a break from Tamoxifen for a few weeks as having recon on Tuesday, definitely going to ask onc if I can stay off them
Bondgirl
Member

Re: tamoxifen and joint pain

Hi, I stopped the tamoxifen on Sunday but mine was coo of low mood and no sleep and within 3-4 days I feel "normal". It was my birthday yesterday, and my children are coming for family Sunday lunch and I wanted to feel happy and not flat. I will take them again on Sunday night.  But the break is a nice feeling

Butterfly318
Member

Re: tamoxifen and joint pain

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
Member

Re: tamoxifen and joint pain

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!!