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
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!
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
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.
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
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.
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
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.
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
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.
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.
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
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?
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
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
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.
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!
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
@ 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.
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.