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.
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
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.
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
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 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
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.
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
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?
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.
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
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!
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
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.
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.
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!
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
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
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?!
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
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 🙂
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
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?
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!
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.
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?
Yes I have read about tamoxifen and grapefruit juice and you might like to see these links:
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:
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.