hello all
beverlys you have all my sympathy…I hope though now you have a diagnosis you can get some specific relief (apart from the wine which I found helps a variety of ills). Thanks for all the other comments, it is so interesting to see how everyone else is faring. and to think I thought the chemo was the hard part!! My feet are also especially bad in the morning and my hands are really swollen. Just an update so far…after my last comments I got in touch with my chemist who has dismissed out of hand any link between tamoxifen and sore joints and refused to swap brands, the breast care nurse also backed this up in a phone call and said I should go to see the onc to be told direct.Helpful huh!! Meanwhile my feet and hands have got considerably worse and the weight is piling on!! However a ray of light on Monday on a visit to the rheumatologist who after reviewing all the symptoms and time line etc said that I was a conundrum but it was significant that the symptoms appeared a month after starting the Tamoxifen. Have had Xrays, bloods and awaiting an MRI of my right hands to help diagnosis. He suggested that I consider at some point stopping Tam for a month and then re-starting so we can see definitively.I have rung the BC nurse with this and she now says that the chemo is much more likely to be causing this (despite having told me last month that FEC did not have an effect on your joints) and that everyone is different in their response. I will go down RevCats route I think and try to gather some evidence before seeing the onc, my appointment is being bought forward.I think that stopping the tam is a good plan as it should rule it in or out once and for all. From the post by lostinfrance she saw a reduction in symptoms after a week! I am definitely going to start the fish oil…I have some liquid stuff that my daughter needed a while ago. Thanks for all the support and ideas…it really really helps. Stay smiling ladies…I did when referred to the OT dept aged 47 for a gripper to remove the tops of jars…hey ho!!
Hello All,
Have been reading this thread with interest as since I started with Tamoxifen in October last year have been plagued with side effects but because I have been having Herceptin as well no-one has come down and attributed to symptomns to one thing or another.
But today I went for my last Herceptin and appt with onc. In the end I didn’t have the Herceptin because of a dodgy echo (but that’s another story). As its the last one she decided to call it a day.
With regard to the Tamoxifen I explained about the side effects (joint pains amongst everything else). Her advice is that I stop taking it for 6 months and as she said “get everything out of my system” and then we either try the Tamoxifen again or AIs. So clearly if she is suggesting this I am working on the basis that it isn’t going to do my long term survival any damage or she wouldn’t have suggested it. This suggestion came with no prompting from me.
So maybe feeC you should take your rheumatologists advice and take a break for a month and see how you go.
Me, I am ecstatic today as for next 6 months will be going drug free, which after nearly 18 months of treatment is just the best news ever!!.
Sam
Hey SamLee! enjoy your toxic free ride…I cannot wait for that day of no poisons apart from the red wine of my choice! Your onc sounds very sensible…it is so hard to know what is causing your symptoms when there is clearly so much potential for damage from all different sources and so much anecdotal evidence as well. I have stopped the tamoxifen as from today and so shall see how I get on. The bought forward oncology appointment should be in the next couple of weeks and so it maybe too soon to tell but it is a start. Either way hopefully there is an answer. Thank goodness for this forum otherwise I should still be struggling with my GP’s advice to accept things and just slow down…after all I am ancient (see age on previous post!!).
Hope things go well for you Fee and Samlee.
I have one of those jar opening thingies too… the bigger challenge is trying to open bags/packets, can just about do crisp bags but otherwise resort to scissors. What an old wreck I am!
Hi all,
Anyone noticing any differences, those who have stopped the tamoxifen and those taking supplements, vitamins etc?
I have taken all 3 brands now of tamoxifen and the Generics brand seems to be the better. Still in pain but the intensity not as severe. I am not doing too much though so I don’t really know if it’s all down to me limiting myself.
Please let me know how you all are, take care xx
Hi all,
ooh that’s curious… just had an email following the ‘yellow card’ I sent in asking me for more details. Ten days into cod liver oil and star flower oil I have itchy hands and worse flushes than ever… the joint pain is the same. Am told it could take a while for the oil to take effect… Haver you put in a yellow card? If not maybe you could go here yellowcard.gov.uk and fill one in… the more evidence the better.
Glad Generics is better for you; I think Wockhardt is worse for me but Genrics not great… not had APS yet…
Just drowning in sweat as I type… deep joy!
RevCat, have not heard of yellow card before but will fill in. I had terrible itching and flushing recently was allergic to painkillers, could you be allergic to the cod liver or star flower oil?
I had a busier day than usual yesterday and it has been bad, up half the night, finding it difficult to deal with the pain. I already have chronic pain from an unrelated issue but pain on top of more pain is just getting a bit much, so I don’t think it was anything to do with the different brand of tam just me doing less. xx
Blood tests all satisfactory, just me that’s not. Have another appointment later today. xx
hiya all
I have been taking tamoxifen since start of jan initially felt very sick,but after advice from “the ladies” i take it with food and have been much better. I take the wockhardt brand,i suffered from aching joints (well still do) but they seem to have calmed down a lot, i don’t know if it’s because I’m getting more used to them or because i have been able to increase my level of exercise,i swim and walk a few times a week and have been going to a pilates class run by a physio for the past six weeks which has really helped me to be more flexible and supple. I still have pain but it is more manageable a hot water bottle helps but clashes a bit with the hot flushes… now if i could just sort them out.
Hope you feel on top of things soon
take care x
Katy, hope you got on alright at docs… glad the blood tests were clear for you.
Shazza bazza thanks for your input, that’s all helpful. I am interested in exercise helping… I attended a rehab exercise class for most of last year, walk at least 2 miles a day, regularly hill walk etc. and the joint pains developed ~ 6m after starting Tam. Compared with Katy I am lucky, my pain isn’t anyhwere near as bad as hers. I am also lucky that my Drs accept it is a side effect, which helps I think.
A cure for flushes… are yes, you could make your millions if you found that!
Hope everyone is OK and not too sore.
Well, had a very bad day yesterday, saw the doctor one I’d never seen before and she basically was saying the pain was in my head, take these painkillers and think POSITIVE. Came out totally distraught, spoke to my daughter who told me to go back in and make a complaint. Went back in an emotional wreck and spoke to the practice manager (when I could get myself together to speak). She was excellent and her jaw dropped considerably when I told my story, very, very sympathetic, said she would speak to doc and head of practice and that it maybe taken further as a official complaint. (Don’t want that to happen) and stated how appallingly my treatment had been. She made an appointment with doc I know for this morning, went home drained and feeling devastated.
Went back this morning, he apologised for my treatment yesterday and actually listened to what I was telling him. So different painkillers and an appointment to see rheumatologist, he said sometimes blood tests can come back fine but it maybe a different type of arthritis, so came away quite happy, hopefully these painkillers will take the edge of this pain.
As I have already said I deal with chronic pain daily and I know if something is sore, I waited 6 weeks before even going to docs because I thought the pain would go away, so I do not run to the docs ever with any little ache or pain. Yesterday I felt stupid and I was being patronised by someone who had little knowledge of chronic pain conditions, all she had to do to finish it off would have been to pat me on the head Grrrrrrrrrrrrrrr.
Today I’m much stronger xx
Some GPs are right out of order. Mine was awful and now that my secondary diagnosis came, she felt really shippish (spelling?), she has changed and become very nice suddenly.
Big hugs, glad that your complaint was taken seriously.
Aah thank you vercors, I am very glad that your doc is good now but it shouldn’t take in your case secondaries for that to be the case. You are already vulnerable to a certain extent and it’s easy to be knocked down by someone’s total lack of interest or care.
I forgot to say that the doc said that the rheumatologist would probably be able to rule out tamoxifen or not, through their experience and expertise xx
Katy I am so sorry you had such a rubbish time with your doctor, and Vercors, you too… it definitely should not require secondaries for them to treat you properly.
From what you say it sounds that I am really lucky the doctor I saw was a former rheumatology doctor who was totally not fazed by my joint aches/pains etc. Evidently she is a specialist breast care physician, working alongside the surgeons and bringing know how with her. Also I am lucky that my pain levels are much, much lower than yours.
Pleased to say my skin has finally stopped itching, even if joints are the same so far. Cod liver oil mixed with orange juice tastes marginally less foul, even if it wrecks the juice! Jury still out on the star flower oil and flushes.
Hope you get a sympathetic rheumatologist Katy. Take that research stuff with you if you still have it… and I know there is also rheumatology research on AIs and joint pain, if not explicitly Tam and joint pain.
I have a suspicion that in a few years this SE will be properly recognised… but it doesn’t help you.
So sorry to hear of your treatment Katy…How can they be so callous…After all the research into pain how can Gps not recognise the importance of a patient history.As I said before my GP told me to just go away and grow old gracefully( or something similar). We are all sending you strength to get through this. I am lucky that the consultant I saw was sympathetic and listened to me. I was taken aback yesterday however to receive a phone call from a research nurse who asked if I would take part in a research study for newly diagnosed Rheumatoid arthritis patients…this was a surprise to me as I was not aware that I had a diagnosis and am really, really hoping it is not so!! I am still plodding on with the exercise although the change of gait due to sore joints has caused me to have a very, very painful hamstring and Achilles tendinitis…I find it so demoralising to drop behind all my running friends and have no motivation any more. They are all entering events that I have no idea any more if I can finish. It looks as though I shall have to pull out of my big “finished chemo” challenge on the 17th March…The mighty Deerstalker.I know this sounds so self pitying when others are struggling to get out and walk but running is so vital to me socially and psychologically. I have maintained my fitness over the last tough year and thought that was the worst…hey ho!!!
Thank you RevCat and feeC, kindness does wonders for the spirit!!
RevCat, Sooooooo glad your itchy is going, it’s extremely annoying.
feeC Sorry that you are struggling with your running, difficult times, when you love doing something and find it’s getting harder and harder to do. It hurts not only physically but mentally.
I feel that tamoxifen may not be considered as with this thread there does not seem to be many of us that are experiencing this pain.
feeC, can I ask how they came to that diagnosis? did you have blood tests etc?
Quiet day today, it’s pouring with rain here anyway, take care all xx
Hi RevCat,
Hope you get on fine today at docs, please let us know xx
Hi ladies - thanks Katy for your message.
Bit of a general update - joint pain getting worse, more fingers joining in and now my left ankle 
Saw my GP today who is brill. She said, oh yes, that’s a well documented side effect of Tamoxifen… I am SO lucky. Anyway, she has started me on 400mg ibuprofen three times a day along with 20mg omeprazole (losec) for the se’s of the ibruprofen (a pill for the side effects of the pills for the side effects of the pill). She says the anti-cancer benefits of ibruprofen are proven, so she is happy for me to take it long term if it works as the benefits outweigh the risks.
So, just to clarify what I am swallowing daily:
20mg Tamoxifen (currently Wockhardt, have had Generics)
10ml (~2000mg active ingredient) extra high strength cod liver oil including 100% RDA vitamin D
1000mg star flower oil
400mg x 3 ibuprofen
20mg x 1 omeprazole
So far there is no effect from the star flower oil on the flushes, indeed they are more evil than ever!
Just a random thought - where are we all in the UK? Is there some kind of regional influence at work here too? Or am I just nuts? Someone told me recently that the central belt of Scotland has the highest incidence of bc in the UK - don’t know if it’s true but it’s curious (I realise that as I’d lived here less than a year at dx I brought it with me, but even so…)
Hi RevCat,
How good is that, that your GP recognises that tamoxifen is a probable cause of your pain. I feel as though I am going round and round in circles hitting my head against a brick wall, famous last words being “it’s definitely not the tamoxifen”.
I have been taking tam for approx 9 months, only had this severe pain for around 2 months, it is extremely debilitating. I don’t feel as though I have r/arthritis, I feel it is directly due to the tam.
I am in the Perth & Kinross area and have lived here for 20 years, before that the East Coast.
I’m sorry to hear that you are now having ankle pain hopefully your concoction of pills will help! My pains are both big toes, both ankles, both hips and groin pain, it started firstly in my ankles, then toes hips and groin together. I’m shaking my head as I’m writing this feel like such a moaning minnie, truly I’m not I have always been the glass half full person! (just as well methinks)
So good luck to you RevCat hopefully this will ease your pain, please keep us up to date with your news and how you get on. xx
Another thought where is it well documented ? How does your GP know about it when mine doesn’t and even BCN says it’s not !! I think I’ll come and see your GP RevCat haha! xx