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tamoxifen and joint pain

CheshireCheese
Member

Re: tamoxifen and joint pain

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

Zeppa
Member

Re: tamoxifen and joint pain

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

horsie5050
Member

Re: tamoxifen and joint pain

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!

RevCat
Member

Re: tamoxifen and joint pain

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.
TotallyConfuse
Member

Re: tamoxifen and joint pain

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!
Guest user
Not applicable

Re: tamoxifen and joint pain

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
kit20
Member

Re: tamoxifen and joint pain

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.

katytc
Member

Re: tamoxifen and joint pain

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

RevCat
Member

Re: tamoxifen and joint pain

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.
kit20
Member

Re: tamoxifen and joint pain

same problem on letrezole. My thumb joint is particularly painful atm. I am on fish oils and glucosamine but I don't know how good they are coz I don't know if it would be worse without them. I am seeing th MD tomorrow about this and will report back any helpful ideas but I don't hold out much hope.

RevCat
Member

Re: tamoxifen and joint pain

@ Onlyme, what you are describing sounds very much like the kind of joint stiffness that many get with Tamoxifen, however usually only with the various generic forms not Nolvadex (the branded type) which is no longer avaialbe in the UK. Is your actually Nolvadex or is it a generic? The scientific research I found suggested that with Nolvadex no joint pain occurred but it did with generics... two reasons were postulated either (a) it is the binding ingredients in the generic forms that cause the problem or (b) there is a protective effect from the binding ingredients in the branded version (i.e. it is the Tamoxifen that causes it). Unfortunately it seems the research probably stopped after Nolvadex ceased to be available in the UK.... though Pepper1's post is encourgaing in that regard.

@Pepper 1, I am really glad to hear there is some new research into this. My team (in Glasgow) certainly acknowledge joint pain as a side effect of (generic) Tamoxifen and are very supportive. Some people do suffer mood swings, tearfulness and depression (there are other threads on those effects) which are well documented side effects, and can be treated effectively with low dose antidepressants. Hopefully your team will be able to help you if oyu speak to them. Don't just suffer.
pepper_1
Member

Re: tamoxifen and joint pain

Hi i have been on tamoxifen since November 2011 and know how you are feeling, just recently my joints have been really hurting and my hands and fingers seem to be the worst at present. I am actually doing a survey for southampton university about this subject and get regular questionairs to feel in, because they feel that this could well be one of the side effetcs of the drug. Something else i suffer is very low moods and just want to cry and be on my own which can be hard with going to work and running a home, do you feel like this at all?
Regards
pepper 1

Guest user
Not applicable

Re: tamoxifen and joint pain

Hello everyone, I've just been reading this thread with great interest. I have been on Tamoxifen for 15 months now and over the past 2 or 3 months have started to have very stiff legs in the mornings and if I sit for while. I first noticed my heels feeling achey then the stiffness developed. It didn't occur to me that it could be the tamoxifen, I put it down to getting older (51) and my job, I work in a very busy restaurant but have done so for 8 years without feeling stiff in the mornings! I live in Spain so get plenty of sunshine and I exercise most days, just a short work out. I am taking Nolvadex. I have very debilitating hot flushes which started from day 1 but this stiffness is very recent and now i wonder if it is the tamoxifen!
RevCat
Member

Re: tamoxifen and joint pain

Hi Fran,
Welcome to the 'I feel fifty years older than I am when I wake up' club... we are a small subgroup of Tamoxifen takers but there is a growing body of scientific research that recognises our experiences.

I would say speak to your team before taking anything orally. I was told by mine that it is safe to take:

Cod liver oil/fish oil/vegetarian omega 3 oil - at max strength with 100% RDA vitamin D included

Starflower oil - they said this would ease the flushes... in my case they lied!

Glucosamine with/without chrondroitin (I take vegetarian glucosamine as I am intolerant to shell fish)

Fish oil isn't too expensive, but glucosamine is, so look for offers eg 3 for 2 at Boots or Holland & Barratt.
Seven Seas extra high strength liquid (ugh) is the highest dose of fish oil... or I guess you could take two capsules

I also take 400mg ibuprofen 3 x a day (on prescription) with omeprazole to protect my tum.

The doctor did say if nothing else all the oils would give me glossy hair and strong nails. Not sure when I turned into a dog...!!

Higher up this thread is a link to some research on this, which might be useful to show your Dr if they dismiss your symptoms.

Hope you get some relief soon.
Guest user
Not applicable

Re: tamoxifen and joint pain

Hello all,
I've just started taking tamoxifen well I think I'm in my 3rd week and I've noticed that I've not got pain but I'm very stiff in my joints. I have started walking more as I thought it might help but it hasnt.
Its very strange I feel well otherwise but my heels are hurting as well but thats it no hot flushes yet.
Are there any herbal rememdies we can try rather than acupuntre as I probably cant afford that.
If anyone knows that would be good.
Love fran
xx
Everton_babe
Member

Re: tamoxifen and joint pain

Hi Flossie

Same problem here in SW Scotland getting APS, though Im getting 10mg tabs and just taking 2. I had to use some wockhart temporarily and Ive had terrible flushes and insomnia, so really dreading the end of current aps batch.
Dont know what other folks are using

Cathie xx

Guest user
Not applicable

Re: tamoxifen and joint pain

I have been having trouble with awful joint pains. The pharmacist at the hospital suggested a low dose water tablet to remove excess fluid from the joints which seemed to work for a while but I now feel I'm back to square one.
I have been taking the APS brand of tamoxifen but now the loacl pharmacy seems unable to get it although it is on the Teva website. Is anybody else struggling to get the APS tamoxifen now?
katytc
Member

Re: tamoxifen and joint pain

tired1, thank you for your advice, being drug free, well, not adding to the ones I already take is certainly a worthwhile thought.
Hope your joint pain diminishes, fingers crossed, please keep us up to date with your progress xx

tired1
Member

Re: tamoxifen and joint pain

I've only been on Tamoxifen for a couple of weeks so not yet an expert but am already getting joint stiffness. I have been having accupuncture for hot flushes/night sweats, which began with chemo. It really seems to work so I would recommend it as a fantastic drug free alternative.

RevCat
Member

Re: tamoxifen and joint pain

Polly that sounds awful. I haven't had zoladex either - you might get more input on that as a possibility in the younger women part of the forum as a lot of younger women have it I think (I think that's the one that puts your ovaries to sleep?).

I have kept up some exercise all through my treatment and beyond, which makes me feel better in myself - endorphins and all that jazz - but have become more restricted as my joints have got worse. I walk at least 30 mins twice a day and I swam for an hour one day last week. That said, first thing in the morning I feel like I am 99 not 49 and really struggle to move. I thought the warmer weather would ease my joints but no.

Have you spoken to your GP? Some people get good relief from hot flushes and mood swings with either very low dose anti-depressants or very low dose beta-blockers. I know I was very grumpy for several months after I started the Tamoxifen but it did eventually go away. I chose not to go down a drugs route for my flushes (they are evil and frequent) as I am already swallowing a mega cocktail of stuff for the jpoint problems... before bc I never took anything more than an occasional aspirin.

Hope you get some rleeif soon - but pop back to our exclsuive little thread any time to tell us how you're doing or to give us any tips.
katytc
Member

Re: tamoxifen and joint pain

Oh Polly, my heart goes out to you, it's just awful. I have no experience of zoladex but hopefully someone will come along soon with some advice. I just said on another thread that I thought I was retaining water because last week my trousers were really tight and this week the same trousers are falling down onto my hips, is this tamoxifen? I have no idea. Sorry I can't be more helpful, take care xx

Guest user
Not applicable

Re: tamoxifen and joint pain

I am six months into Tamoxifen and had 3, three monthly injections of Zoladex and it seems like I am getting every side effect going....hot flushes, night sweats, fatigue, very achey joints ( I have to come down our stairs one foot at a time), mood swings, sleeplessness, weight gain which I am not sure if its water retention? I was always really active before dx now it's really hard to get motivated to exercise. I am not due to see my onc until the end of July but not sure how to cope with these side effects I am getting with all of this medication?

Have any of you ladies felt that pushing yourself to exercise brings about relief of these side effects? I have still got another 4 1/2 years of Tamoxifen and the way I feel at the moment and at the moment I just feel like a blown up balloon that is prone to an occasional outburst. Now summer is here I would like nothing better than to put on some shorts or go for a swim in the sea but I have lost all confidence in how my body looks now.
katytc
Member

Re: tamoxifen and joint pain

Hi RevCat, hope you are feeling a bit better, it really is very painful! Have had my x-rays and received my appointment for bone scan, came very quickly so had to cancel because of holiday so big day for me next week!! Hopefully I will have some answers soon. How come your lot are sooooo clued up????
Do you feel as though your pills are working? Do you have any relief? Take care xx

RevCat
Member

Re: tamoxifen and joint pain

Katy so sorry this drags on and on and on with no resolution for you.

I'm having a bad joint day today, not sure why except I was a bit later than usual swallowing my NSAIDs. Two months into this regime and, yes, the drugs take the acheyness away even if they don't stop the break-through pain when I exert/twist or whatever. So that's good. I tried taking them more spread out or even taking less for a day or two - bad plan, the pain came back very quickly. GP very happy to continue long term, re-iterated the anti-cancer benefits, saying she wouldn't just give me NSAIDs for that purpose, but it justifies using them as long term pain relief. And omperazole to protect my gut from the NSAIDs...

I'm confused by your lot's attitude - my aches began about six months after I started on Tamoxifen. As time goes on I find more joints involved - now when I wake up my toes are all sticking up in the air and it takes a while for them to revert to normal, so I strut around looking very odd; both big toes are sore today 😞

So, today I have two wrist splints and two ankle supports on - very funky.

Ah well. It's better than the alternative.

katytc
Member

Re: tamoxifen and joint pain

Aaah RevCat it's not good at all this pain!!
He said it's not the tamoxifen because I would have had the symptoms earlier meaning the first few weeks, if it had been letrozole I'd been taking that would have been conclusive, now that is own doc, BCN and rheumatologist that have told me the same thing, I just don't know any longer will just have to wait and see, appointment will be after bone scan I just feel real tired xx

RevCat
Member

Re: tamoxifen and joint pain

Hi Katy,
Well, good news that it's not rheumatoid arthritis anyway.

How does he KNOW it's not Tamoxifen? Is there a test (she says rhetorically and slightly sarcastically). I could live with them saying 'I don't think so' but then my lot just say 'the link is known...' So who is right/wrong?

At least all these tests can rule things out for you.

Now I'm back into routine with my meds after Easter disruptions (so sometimes 8 hour gaps) my general acheyness is gone but I still do my Tin Man impression every morning and my joints still hurt some of the time, with more joining in.

I'm sure I'm growing gills from all the fish oil, and my coat is probably very shiny, but as to whetehr it makes any difference, I'm not so sure. Hey, will keep going. When I need a new prescription may try to see my GP again.

katytc
Member

Re: tamoxifen and joint pain

Hope all is well with everyone.
Had my appointment today with rheumatologist, not tamoxifen and not rheumatoid arthritis, so had lots of tests then blood and urine samples, then X rays and finally have to have a bone scan, appointment will be sent.
I really don't know what to think now, one step forward ten backwards!
He could see I was in pain but not the sort of pain I should be in for the tests he was doing.
If anyone has anything similar, or can give me any advice it would be truly appreciated xx

RevCat
Member

Re: tamoxifen and joint pain

Hmmm, not sure - was uber stiff this morning when I woke up. Less achey than I was and have stopped using my splints again (on Monday had two big wrist splints and an ankle support I was so achey :0( ) but I have a feeling the NSAIDs may be masking a general deterioration as my knees are starting to join in, and stairs are getting to be harder work... not good: I am climbing Ben Nevis for BCC in September... even if I have to crawl all the way up and down!

katytc
Member

Re: tamoxifen and joint pain

Hope so too, this week I have pain in my fingers, just one on each hand. I'm just aware of it not chronic, appointment can't come soon enough, any better now you have been quieter? xx

RevCat
Member

Re: tamoxifen and joint pain

Hi Katy,
I am not seeing much obvious benefit from my potions... but, having had a few days when the NSAIDs have been more spread out than usual I have noticed the aches returning with a vengeance, and more fingers/toes involved. Hope some rest and then some routine will overcome it once more.

Hope you get a useful outcome from the rheumatology people.

katytc
Member

Re: tamoxifen and joint pain

Yes RevCat, the busier you are the pain does seem to worsen, hopefully in the next week the pain will subside for you. Do you feel as though your potions are working?
TTM, sorry I don't know about the cholesterol either, I was already taking statins prior to and measured 4.6 very recently xx

RevCat
Member

Re: tamoxifen and joint pain

Hi TTM, no idea about cholesterol, sorry...

Katy hope you get some useful advice from the rheumatology people. I have heard people syaing their aches stopped when they stopped the Tamoxifen.

My joints are evil today! So achey. And that's with all my potions. Maybe I've used them (the joints not the potions) too much? Or maybe it's because yesterday I was late taking one dose of NSAIDs?

tommyticklemou
Member

Re: tamoxifen and joint pain

does tamoxifen and zoladax make cholesterol goe up in premanapausal women then?

i have read that tamoxifen has some effects in menapausal but opposite effect in premanapausal - like bone thinning etc.

TTM

katytc
Member

Re: tamoxifen and joint pain

Hi all,

An update I now have my appointment for rheumatology, hopefully they will be clued up about tamoxifen. If it is the tamoxifen does anyone know if the pain stops after the five years? Feel a bit daunted by appointment as I don't want to be diagnosed with something I don't really have (if that makes sense) xx

Gardengate
Member

Re: tamoxifen and joint pain

Thanks for comments it's nice to know this is 'normal', just have to learn to accept all other aches and pains as being normal now and hopefully in time i'll stop having the anxiety attacks - isn't life a ball!

21210
Member

Re: tamoxifen and joint pain

Hi ladies,

I was on Tamoxifen for 3 months last year before being switched to Zoladex/Letrozole combination due to a blood clot.

Have now been on above combination for 7 months, hot flushes peaked at about 5 months & are now fewer so settling down hopefully but joint pain seems about the same, i take Vit D, Glucosamine & Omega 3 alongside a low dose asprin (for clot).

I too have a brill Gp who worked at Marsden in Breast Unit so she is quite switched on about se's & never dismisses them, infact she is the only Doctor since`starting treatment who also suggested the requirement for cholesterol testing when on hormone treatment which she does every 3 months alongside Vit D levels & Bp & surprise, surprise my cholesterol at the start was completely normal but at 6 month check had risen to 5.7 with 6 being the time you would require medication so will see how i go at next check but for now am trying to control by diet but she has already warned me not to be shocked as this is another se of hormone treatment & funnily enough my dad who has Prostate Cancer & is also treated by hormone therapy (zoladex) we flush & ache together has already risen above the magic number 6 so is now on medication.

If any of you are at the Gp's it is well worth asking them to check your cholesterol as many people i have spoken to say that they did not know that this was a possible se.

Anyway back to joint pain, i personally go to bed aged 41yrs & wake up 91yrs 😞 & live in the sunny south of England (not so sunny today). My hips & shoulders are the worse pain but a little in my wrists too, feet seem to be ok (fingers crossed)

Love to all

Sarah.x

RevCat
Member

Re: tamoxifen and joint pain

Hi Gardengate - your timetable is virtually identical to mine!

Flushes/nightsweats from the 'get go' and sometimes accompanied by mild nausea, though thankfully not enough to need any meds. Sometimes night cramps in my calf muscles - youch.

Joint ache/stiffness (posh name arthralgia) and tendonitis/tenidopathy - both wrists, one ankle, both thumbs and sometimes other fingers and toes - developed after about 6 moinths and is progressing. Although my drug cocktail keeps the overall aches at bay, still incredibly stiff in the mornings - yesterday I was literally dragging my left foot for a good five minutes before it freed off.

If you track back on this thread I've posted links to some CRUK data on this as a side effect and also to some 2010 research. I am lucky, I have medics who know the work and believe in the effect; others are not. I am curious to know if there is a vitamin D link as most of us seem to live in Scotland.

Gardengate
Member

Re: tamoxifen and joint pain

I've been taking tamoxifen for about 14 months now and thought I was doing well. The first few months were a bit hot & moody but noting too bad and even these tailed off after about 4/5 months. However, in the last 2/3 months I've had terrible joint pain in all bigger joints, my ankles are really stiff first thing in morning and it takes me a bit to walk properly. In the past 3 weeks the flushes and constant nausea has appeared. Not sure why this is happening after so long, can anyone else tell me if they've expeienced this? I had chemo starting Sept 2010 (also part of Avastin trial), mastectomy in Feb 11, followed by rads in April 11. Any comments would be appreciated.

tommyticklemou
Member

Re: tamoxifen and joint pain

hi there,

just read gardenpartys comments about the grapefruit. i have just started taking tamoxifen (3 weeks) and someone that has been on it for a couple of years had mentioned this to me about grapefruit. anyway had my appointment with onc yesterday and asked, and she did say about theory about grapefruit interferring possibly with medications. but i got impression you would have to be partial to grapefruit and having in their diet all the time and she said she didnt really think people would have a problem. i am not that fussed about grapefruit but have had it in fresh juice, but i think i will steer clear to be on safe side!

so far not had hot flushes in day, but have got a bit hot/sweaty/clammy in night on couple of occasions, but it has turned warm hasnt it, so not not sure if i had too many layers on/thick quilt or what!

TTM

katytc
Member

Re: tamoxifen and joint pain

Thank you Shubuu for the information, I haven't felt as sore, it's still there but not as ouchy ouch, I think it's due to the weather, it's been so lovely and I do think it helps our poor bones.
RevCat, 2 months does seem a long time with no improvement but I must admit I did think your hair was particularly glossy and sparkly shiny.
Still waiting for appointment, still taking painkillers xx

Guest user
Not applicable

Re: tamoxifen and joint pain

Hi all.
Been on tamox since finishing RT in feb, have ositoarthritis( know thats the wrong spelling ) which was dignosed 02 the only pain i have is pelvic and hip pain,(must stop saying ONLY,) also cramp in both hands, effects the little finger and ring finger, such an odd feeling.no hot flushes during the day, but at night it gets very wet. diet- grapefruit: years ago medical people said that grapefruit interfeard with the make up of any tablets you might be takeing? might still be true. does tamox make u feel low, cuz i have a could not give a dam about anything, i seem to say hoo humm and walk off. iam laughing to my self now that iam thinking about it. reading this post and all your comments makes me feel normal, for a change. keep takeing the tablets!!!
best wishes to all
having a mad 10 mins xxxxxxx

RevCat
Member

Re: tamoxifen and joint pain

Just checking back in to see how everyone is doing.

With this jolly cocktail of stuff I have to admit that the general acheyness of my affected joints is much less. My wrists/thumbs and one ankle still hurt on exertion, and I am still like the tin man from the wizard of Oz first thing in the morning or if I sit too long, but overall a bit 'easier'. Of course the warmer weather may be helping too... Still have weak wrists and clicky tendons. Ho hum.

The hot flushes are as evil as ever, so may ditch the starflower oil once the course is complete (by which time I'll have given it two months).

Allegedly all this oil I'm consuming should give be a glossy coat... or is that the cat?!

RevCat
Member

Re: tamoxifen and joint pain

Hi Shubuu (fab handle btw), sorry you need to join our little gang, but welcome anyway. Interestingly the Dr I saw at the breast clinic told me to take 100% RDA vitamin D as aprt of my delightful cocktail... not seen any benefit yet but it won't do any harm. Most of us on this thread are in Scotland where we are all vit D deprived, so it might well fit....

PS what is sun?! ;0) Actually we did have some today it was GLORIOUS

shubuu
Member

Re: tamoxifen and joint pain

Really glad to find this thread and thank you for all the information. I started Tamoxifen (Generics) at the beginning of March; and although used to chronic pain in my joints ( another health issue), I was startled to suddenly find previously 'good joints were beginning to complain.

This study regarding Vit D and joint pain looks interesting, though of concern if it is really that difficult to bring Vit D levels up to an optimal level. I hope to ask my consultant about this when I next see her. I was tested as deficient in Vit D before and during BC treatment - I'm taking the supplements and running out to the sun when I see it-so can only hope that will be enough 🙂

http://www.holisticprimarycare.net/topics/topics-a-g/cancer-care/1086-vitamin-d-may-prevent-tamoxife...

katytc
Member

Re: tamoxifen and joint pain

Painkillers are taking the edge off the pain, but am doing a lot of sleeping, can't win, referral to rheumatology still waiting would imagine around another month or so. Have pain clinic on Thurs so will see what they say.
RevCat that's is good that general aching is less and your tum is back to normal, why are the hot flushes worse is it to do with the medicinals? Mine are a lot better now don't know if it's because I'm barely concious now so unaware of them happening??? xx

RevCat
Member

Re: tamoxifen and joint pain

Update... one week in to new regime...

Joint stffness - no change
Hand/wrist weakness - no change
General join acheyness - less, GOOD
Tendon pain - no change
Tendon clickyness - louder than ever!!
Hot flushes - 'deeper', wetter and generally more yuk... oh dear.

Guts - now settled down again, phew.

Have now added vegetarian glucosamine (am allergic/intolerant to shellfish so can't use the real stuff) to see if it helps at all.

Anyone else making any headway?

RevCat
Member

Re: tamoxifen and joint pain

OK, today is Day 4 of NSAIDS + Omeprazole...

Good things - joints less sore if no less stiff, tendons just as clicky
Bad things - loads of bloat/gas and abdo pain despite the 'NSAID sandwich' approach to taking them

Will contact GP today... back to the drawing board?

Edit 5:45 pm
Hmmm... OK so today since I typed all that my guts have been fine! Bit gassy but no pain... confused.com!

tommyticklemou
Member

Re: tamoxifen and joint pain

thanks for info guys.

with the grapefruit thing, it was her onc that told her not to have grapefruit i think, so thats interesting.

i will monitor the weight thing closely and will be interested to see what happens. i have never had a weight issue. weighed the same within a pound or two since i was 18. nearly 22 years. size 8, approx
49kg. never dieted. so if i start clapping on weight its the tamoxifen i reckon.

i dont know where jennifer saunders gets her info, of its just particular to her for some reason i dont know. like elinda says annoying when they dont say where their info comes from.

love to all and hope everyones side effects improve. will keep you posted on my progress.

TTM

Guest user
Not applicable

Re: tamoxifen and joint pain

I have had....wockhart, generics and APS and am currently on APS and to be honest havent really noticed any difference! In the last few days I have been tiling a bathroom and boy have I ached...from tips of fingers to tips of toes....I am now waiting to see the onc on Tuesday and want to know if I can take a month off so i can really see whats going on! re calories I suggest eat less move more?

elinda45
Member

Re: tamoxifen and joint pain

Yes I have read about tamoxifen and grapefruit juice and you might like to see these links:
http://www.urmc.rochester.edu/news/story/index.cfm?id=720

http://foodforbreastcancer.com/foods/grapefruit

Grapefruit, particularly grapefruit juice can apparantly interact with quite a number of drugs. I haven't seen a specific warning on any of my tamoxifen information leaflets so whether or not it is still considered a problem I'm not sure - but I have read that it is. I've decided to avoid to be on the safe side.

with regard to weight gain, Cancer research Uk state that it can cause weight gain in 10% of people:
http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/tamoxifen

I've never heard of it storing 70% of your calories and quite frankly if that was true then you'd expect a far higher number of women to experience significant weight gain. I do hate it when celebrities say things like that without giving the source of their information.

the other to remember is that many women on tamoxifen are also getting close to menopause which can also lead to weight gain. I know I'm peri menopausal from blood tests.

I lost a lot of weight during treatment and slowly I've put two thirds of it back on. I'd like to blame the tamoxifen but I think in my case it's because I eat too much, pure and simple. I have though noticed that I'm storing more fat around my middle than I used to so whether that's tamoxifen or approaching menopause I'm not sure.
Elinda x