Hello all
It’s interesting how different people are given differnt diagnoses isn’t it? I saw the rheumatology specialist nurse last week for more steroid injections and I asked her definitely if it was RA, she could only say ‘if the doctor says it is, then it is’ (the doctor said it was RA rather than a bad SE just from investigating my joints and symptoms) but went through my blood test results with me. I feel so much happier now I’ve had the jabs in my shoulder and my ankle and wish I’d had them earlier. I’ve been on max dose ibuprofen for nearly 8 months whilst waiting to be seen, and am so pleased to not have to take them at the moment. I have an appointment with my GP this friday to discuss taking the long-term medication - I just hope they’re right and it’s not a SE of tamoxifen that they’re not acknowledging!
I am in Edinburgh and being treated at the Western General.
I watch this thread with interest to see what the difference is in treatments/diagnoses. Hope everyone finds pain relief soon!
Hi Beverleys,
Did your blood test show you had RA? I am waiting to see rheumatologist. Really glad you are feeling better and steroids have made a difference xx
Hello all
As most of you have already mentioned some of the side effects of tamoxifen a lot of us experience can tend to get dimissed / disregarded as not actually being down to the tamoxigen. Well all I can say is that having been off it for the last 5 weeks due to my reconstruction op i havent been experiencing
* stiff ankles (duck walk in the morning)
* As many lower back aches (was mostly every day before)
* fuzzy head
* waves of fatigue (especially early morning)
May be coincidence but if they come back once I restart tamoxifen (and even with these I do intend to restart) then at least I can tell them where to stick it if they tell me its coincidence. And on the bright side at least if they do come back then maybe I can look forward to them going again in 3 years time
Good luck all with your SEs xx
Well now, it seems we’re all in Scotland… so what’s in the water up here?! Joke.
Both the breast clinic at Glasgow Wstern and my GP say it’s a known side effect… maybe there’s some sneaky research going on in Glasgow and no one has told me?
Alexc your ankles sound like mine, I also get coccyx ache, both wrists and thumbs and now several fingers. Compared with Katy I get off lightly for pain I think.
Hi Katy - my bloods came back negative for the RA factor (which is why my GP dismissed it in the first place) but they still think it is and apparently that is a better outcome than if I had the factor.
Alex - will be interested to see if the pain comes back when you restart the Tamoxifen.
People at work have commented that it might be the weather that affects me! Maybe it is the water though!!
Hello Revcat,
while I barge in here! I live in Fife. Have been on Tam since October. At present I don’t have as much stiffness in my knees and legs. My fingers are sore and clicky, my ankles and lower leg are swollen.
Funny but the pharmacist accidentally gave me APS today ( usually I’m generics) and it has the most comprehensive list of SE’s including depression and swollen ankles, confusion, cataracts. Good for them, they seem to acknowledge it all vs generics and wockhardt.
So I’ll see how I get on.
Carolyn xx
Documentary evidence - I can’t find anything more than I linked before that’s scholarly; but CRUK lists joint pain as a ‘common’ side effect of Tam here: cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/tamoxifen#common
cf the Tam packaging that makes no mention whatesoever of this… MacMillan and BCC leaflets don’t mention it either
Hi Crabbit - welcome to achey land! Will be good to know how how the APS goes for you.
Hi,
1 in 4 have joint pain, thats a large percentage so why do only some medical staff have knowledge of this. I’m going to print this off and take with me.
I just don’t want to be diagnosed with something I don’t actually have.
I have a weakness and chronic pain on my left side that is why it’s difficult because both sides are now affected.
Can I ask if anyone already had a weakness in the area that is now affected? Mine seems to be mirroring the bad side, if you know what I mean? It’s hips downwards for me no pain in wrists etc. xx
Hi Katy
before Tamoxifen I had perfectly good joints - all of them apart from my left knee which has allegedly been worn out since I was 29… two decades ago! It has never stopped me hill climing though. My ankles have some weakness due to prior severe injury sprains but otherwise nothing. Similarl to knee - walked Offa’s Dike with a strapped ankle.
My Tam weakness began on my unaffected side - left wrist, and now involves both hands/wrists, several fingers, my left ankle and, perhaps due to compensation effects, my left knee. I also get some low back pain which comes and goes.
Yeah - 1 in 4 - so why do people say they don’t know about it? Odd.
Hi all, just wondering if anyone has any updates?
After two days of NASAIDs I am a little less sore - not painfree by any means, but better than I was - and learning how to take them so as not to hurt my tum! I have omeprazole to guard agaisnt reflux but still had severe gut-ache on day one. So now I have an NSAID sandwich every mealtime… half my meal… drugs… half my meal. It seems better. No difference on the stiffness yet… and tendons as clicky as ever
Before all this I never popped ANY pills!
Butting in here… Has anyone heard of NOLVADEX-D??? It is the original purest form of Tamoxifen that you can get. I was lucky, I insisted thats it was the one I had to have and got it for at least 4 1/2 years until doctors adjusted there budgets, because, of course it was much more expensive. It may be worth asking for it as I had next to no side effects ever from 5 yrs on it but did when they tried to change me over…
I would have thought, logically it would be better to pend the money on the non generic proper branded one and then they wouldn’t have to pay the extra for all the other drugs to counteract the SE of the generic one…just a thought
Clare xxx
Hi Clare… if only! Yes, we researched that - they stopped making it in 2010, just as research was published to show the link between generics (all three brands) and joint-pain… I am the luckiest of the ladies on this thread as (1) my pain is less debilitating and (2) my GP and breast team believe in the link!
Glad you had the real stuff… I you so deserve fewer side effects.
Hi all
Just wondering if you know about the yellow card scheme? The Commission on Human medicines can be contacted at:
It’s a way of health care professionals and patients reporting adverse side effects of their medication. Maybe if we all started reporting, it would raise the profile a bit.
I’ve been on the AMS version since December and not too bad. I have extensive mets (including bone) and am never sure if the low back and other aches and pains I get are the mets or the Tamoxifen!
I seem to have some swelling of two of the fingers in my left hand and the skin on my forearm is uncomfortable to touch, like the skin is stretched.
Ho hum. Guess this is the new normal for me!
Laurie x
Thanks Alesta, good advice - yes I’ve submitted a yellow card and they have followed up… hopefully it’ll be useful somehow!
can i ask how many brands of tamoxifen are there, 3? and is there a general consensus that one is worse than the others - or does it depend on person and one can suit one person but then not suit someone else.
i have only just started on this a few days ago, and hospital gave me wockhardt. but i have only got a supply of 30 tablets and then i have got to get from GP they said. so wondered if he is likely to change to another brand or something. or do i want him to change to another brand as wockhardt is worse!. or does depend what local chemist stock.
had anyone read womans own mag this week, flicked through it yesterday at supermarket waiting to pay. jennifer saunders in there not particularly about her bc she had but she does mention she still takes tamoxifen and that she has lowered her calorie intake and goes out walking as the drug makes your body store 70% of your calorie intake? i havent heard about this. i have heard women mention about weight gain, but 70% of your calories seems a lot.
somebodys told me not to eat grapefruit as well as it reacts with it and can make less effective, is this correct. (the person who told me takes it btw).
any advice appreciated as always.
TTM xxx
Hi TTM,
There are 3 brands APS, Generics and Wockhardt. I am taking Generics at the moment and that seems to be better for me regarding the hot flushes.
It depends on what your chemist stocks, I had all 3 last time so it was a good experiment!!
No difference with joint pains though.
70% WOW, haven’t heard that before either and can’t help with grapefruit xx
Hi TTM,
Welcome to the wonderful world of Tamoxifen. Hopefully you will not have any yukky side effects, most poeple don’t.
OK.
There are three brands of tablets, UK Generics, APS and Wockahrdt. The active ingredients are identical but the ‘binding’ stuff varies. I have had Generics and Wockhardt each of which has given me simialr side effects, though the significant joint pain can be traced back to when I started on Wockhardt. Other people will have other experiences. Some people have said that APS is the least bad for aches and pains.
Re: grapefruit, I have heard of this opinion. I know there is some general research going on looking at the interaction of grapefruit with various drugs (e.g. people on statins are told not to have grapefruit as it seems to increase its effects. Ironically one day people might be told to take lower doses and eat grapefruit…) I would speak to your onc or GP if you are concerned and see what they say.
Re: weight gain, all I can say is that a year on from starting on Tamoxifen my weight is the same as when I began - but has fluctuated and is slowly creeping up. I eat sessibly and exercise regularly, so it does seem to have some effect.
For me, at the end of the day, sore joints, hot flushes and watching my weight are a price I am prepared to pay to keep the cancer at bay. I have made some dietary changes based on scientific papers I’ve read, but none of them is yet ‘proven’ so I am not advocating them for anyone else.
I think the key thing is that we feel we are in control of what happens and that, should the worst case scenario occur, there is no sense of regret over what we did or did not do.
Hope that helps a little bit. Take care.
thank you revcat/katytc for that info.
i will see how the wockhardt goes and speak to my GP and onc when i see them in next few weeks for their opinion.
i am like you revcat and think i have to keep with the tamoxifen and want to find out if i can do anything to help with side effects assuming i get them. if i have to change some things to help then thats what i will have to do.
is one of the brands cheaper than others then and thats why they try and push that one more. i have read this about some of the AI brands.?
thanks all.
TTM
Don’t think that’s the case with tamoxifen just different makers TTM, I take statins so would be unable to have grapefruit. Statin box comes with a warning about grapefruit. xx
Yes I have read about tamoxifen and grapefruit juice and you might like to see these links:
urmc.rochester.edu/news/story/index.cfm?id=720
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:
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