Having thought I’d done with posting on here, I am now wondering if there are any other people who have experience of hand/wrist problems which may be attributable to Tamoxifen? I ask as I now have what appears to be De Quervain’s tendosynovitis in both thumbs/wrists. Whilst one was injury induced, the other is ‘spontaneous’ and I wonder if there is a link to Tamoxifen? I know there are established links between Aromatase Inhibitors (AI) (notably Aromasin)and carpal tunnel syndrome (CTS)and a quick trawl of proper research papers indicates a smaller link with Tamoxifen and CTS, as well one incidence of tendinopathy (akin to De Quervain’s) in a woman on AIs.
I am happy to keep on with my Tamoxifen - high risk of recurrence vs sore wrists is a no-contest imo - but I would be interested to know if anyone else has had similar experiences as I am planning to mention this at my next 6 monthly check up.
Thank you. (I look really funky with my wrist splints!!!)
I’ve had a really aching arm on the side I had teh chemo through, like a pulling sensation and dull bone ache. this went away after chemo but started up again when I went on Tamoxifen about 7 weeks later!
Is that similar? My hands are OK, sometimes go a bit numb and tingly.
hic hic; twitch twitch; denial… moi? :-)) Where IS Forum Posters Anonymous when you need them?
Not sure if it’s the same or not… I had vein pain with chemo and it’s nothing like that. One hand was actually diagnosed as De Quervains in September (I’m still waiting my “urgent” appointment for steroid injection in to it) the other has spontaneously occurred over the last few weeks.
This hurts if I lift anything moderately heavy, grasp anything or stretch either of my thumbs. One hand passes the DeQuervain’s test (bend thumb into palm and press slightly - ache/pain in wrist) the other does not…yet.
The numb/tingly sensation sounds a bit like CTS or peripheral neuropathy perhaps… so not totally different I guess.
Dontcha lurv these free extras?!
Hope you are doing well… apart from my hands I am doing really well - finally feeling like ‘me’ again.
Even if you are not sure of a link you can report that you possibly have a side effect (that is not in the long list known about) on yellowcard.mhra.gov.uk/
you can do this as a patient not just a doctor
it will get filed away but if they have lots of reports they can investigate further - which is quite useful for the side effects that a doctor might see as unimportant
Hi Rev Cat,
I am on Tamoxifen and am having problems with my hands and pain in my wrists. My thumbs are particularly painful. The problem started when I had been on Tamoxifen for 8 weeks, at the same time as I started to experience other side effects. I also have numbness and tingling in the last two fingers of my left hand.
I asked my consultant about it and he was adamant that it couldn’t be Tamoxifen but I’m sure it is.
Hi Tina,
that sounds similar as far as the thumb pain is concenrned. The numbness/tingling sounds a bit more like CTS, based on what I’ve read. The research paper I found came up with 0.7% of women on Tamoxifen with CTS and 2.6% on Aromatase inhibitors. I guess that makes it a ‘rare’ side effect but still there. One study referred to a woman on aromatase inhibitors who ahd achilles tendon problems and De Quervain’s in one wrist. My hunch is that the evidence is probably there, just it’s scant and no one has collected it… yet. However I am certainly not a medical researcher or statisitician, just a curious gammy-handed woman!
Thanks Sue/Alice Cliche, I may well do just that… it all adds to the bank of stuff someone just might look at one day!
It’s quite hard to tell if there’s a connection or not with these things. I developed an achilles tendinopathy about a 10 months after starting tamoxifen. It was very odd because I’d never had anything like it before and, of all things, it was triggered by starting yoga which was the most gentle sort.
I did wonder about whether it was a result of weakness caused by taxotere and hadn’t really considered tamoxifen.
Elinda x
Just a thought - partly to give you an example of how unexpected some drug side effects are - the antibiotic ciprofloxacin can cause tendon problems.
I’ve now had a second thought - ciprofloxacin is often the antibiotic of choice to prevent chemo induced infections - so you may have even had that.
de Q’s wot-not is usually considered to be spontaneous - or a reaction to everyday usage - all that washing up at Christmas - but we can only find out about side effects when someone looks at the available data and considers if it is happening more often than expected.
Thank you for your comments, the thing is even if the pain is caused by the Tamoxifen do we really want to give it up! I guess I’ll just have to wait another 4 years, if it goes away when I stop the Tamoxifen then we’ll know.
Thanks everyone for your comments… it’s nice to know I’m not alone, though I’m sorry you have sore wrists and/or ankles too
Tina - absolutely - I’ll gladly live with sore wrists/thumbs for five years if that’s what it takes to prevent recurrence.
Elinda - I had taxotere (docetxel) too but it was pre-surgery so my first de Q’s wot-not (great name!) was 9 months after I finished tax and 7 after the start of Tamoxifen (the second being about 10 months)…
Alice Cliche - I don’t know if I had ciprofloxacin… did get an infection after final Tax, but again that’s be about 9m before first de Q. (It’s good to have a pharmacist’s input - thank you)
Maybe there are too many variables in here to be clear, but I guess some clever person could make sense of it, if there are enough of us reporting this type of effect.
Hope all is going well for you all, whatever stage you are at, and that you have many NED years ahead of you
Evening RevCat.
I do know a lady who had this sort of thing and it was put down to Ciprofloxacin. I don’t think she was on Tamoxifen. Tendon problems are very much a known side effect of Ciprofloxacin. It also causes muscle weakness I think. The problem is we have such a cocktail of drugs trying to control the BC. It is difficult to know what to blame.
It must be a such a nuisance and not what you need after all you have been through, especially as you want to take the Tamoxifen if you can. I hope you get it sorted out. It would be interesting to see if you did have the Ciprofloxacin though.
Don’t work too hard in the next couple of weeks!!! Silly thing to say. Watch your stomach eith the anti inflammatory drugs if you are taking them. The side effects of all the pills we take are such a joy. Don’t carry anything that is precious to you! No washing up and get the shopping delivered!!!
Cackles x
Hi Cackles! How lovely to ‘hear’ your voice again.
Shopping ordered from Mr JS to be delivered. Not popping NSAIDs too often… I am OK with them but when wrists are more nuisance than severe pain I put up with it (contra physio advice to keep popping pills proactively; ‘urgent’ referral for steroid injection into synovium… 10 weeks and counting).
Busy time… hee hee just a bit… but fabulous fun. best bit will be Christmas Day when after the (whacky) service we serve dinner to around 40 people who would otherwise be alone… overseas students, addicts, elderly people… love it, love it, love it!
Off to Manchester today to graduate MPhil (get me! withdrew from PhD after dx but was allowed to submit for MPhil instead) so will go splintless for photos (vain vicar)!
Could the 'botics cause that effect as much as 8/9 months on?
Hope you’re well now, charging through rads and out t’other side to Land of NED which is a good place to be - even with wonky wrists.
RevCat, enjoy Manchester… I did Oncology at Christies many years ago… The people are lovely, but it rained nearly every day!!! Just like Glasgow…Ciprofloxacin related tendon problems have been reported up to Eighteen months later…I think it can damage the DNA. However don’t quote me on that. The last article I read was all about the American Black Box system of warnings and people wanting compensation. I am going to see my Team on Thursday next, I will ask if anybody has any answers.
You could try e-mailing the Ask the Nurse Service at BCC. They would delve deeply for you!
The problem is you have had chemo etc. so many things that can damage the joints etc months later. Ariomatase inhibitors can cause tendon problems which are sometimes resolved when the drug is stopped. None of this helps your poor hands. I do hope you get your appt soon. How is driving and the pain?
Christmas sounds good …lyou probably have some of my mad social worker cousin Val’s clients coming!!!
Hold on in there
Cacklesxx
Hi Ladies, I too have the painful thumbs. I asked my onc about this as I thought it coud be a side effect of the chemo but she said it wasn’t and most likely to be Tamoxifen. I can’t take NSAID because of poorly kidneys so like most you I just have to put up with the pain. I have found a glucosamine cream with emu oil that seems to help. Am now going to log my condition on the said website and hopefully someone will pick it up and start looking into it!
Morning Ladies. I am not on Tam but on Arimidex and have problems with both thumbs now. Life bit difficult with two trigger thumbs!!! When visited GP with first one he said it could happen to anyone and could not blame the Arimidex. Although a possibility! Chemo has a lot to say for the problem I think, but now with second thumb also giving up not sure what to do. Just simple things like pulling up socks is very painful and no strength. Mel would you be so kind as to pm me with details of gluosamine and emu oil cream you are using. Used to take glucomsamine which I used to get from my chiropractor but not been able to see him because of risk of lyhmphodema etc and he is a long way away and choice in shops is confusing! Thanks and good luck everyone.
Yes, I absolutely have the exact same problems - DeQuervain’s issue - BOTH HANDS/THUMBS/WRISTS at the same time last year - taking the entire summer to resolve. I am a teacher so it is very difficult and I have to be so careful and coddle my hands and feet! My oncologist confirmed that this is caused by the Tamoxifen. Only 3 more years…
I had/have tendon problems caused by tamaxifem. On it 2 years and knee, shoulder, elbows, feet all hurt. Also developed a trigger finger. Needed cortisone injections just to survive. My DR took me off and all have resolved except my elbows. They were by far the worst. Getting better but still in PT. Tendon problems with tamaxifen are the real thing. Starting Evisat in a month and hoping the results are different
I am on drugs as I am high risk. Never had CA
I was diagnosed 10 years ago. I was VERY blessed and did not do chemo. My treatment was surgery, radiation and 5 years of Tamoxifin. I experienced pain in my thumbs while on it but thought it would go away when I stopped the pills. Didn’t happen! I have been off for 5 years and it continues and is getting worse.
I have not found any product that would make it better at this point.
Doctors seem to shrug it off.
I am activelly pursuing help at this time as it seems to be increasing in severity and alot of times involves my wrists also.
