Oh dear, how awful for you. Very pleased your appointment is near and you can have a good discussion with your consultant. Have you tried deep heat on your joints? I found staggering to the shower and getting hot water onto my body helped. If I can offer some encouragement, my joints are very good now compared to last year. I don’t know if my body is used to the drug, or wether my taking up swimming - very gently- is the answer. Good luck with your appointment, and do let us know how you got on. X
I’ve brought forward my Onc appointment to the end of Jan, just over two weeks away. Now very painful in both ring fingers, making gripping, chopping, etc., very difficult. On top of that I am pretty tearful and emotional and walk around like someone of 90 in the mornings! Don’t even get me started on the indigestion and IBS, or the painful nights trying to sleep through hand and boob pain! Have been so tempted to stop but appointment is close now so will persevere for these next couple of weeks. Really hoping for a sympathetic and positive appointment.
Thanks so much AnnieJ - my next Onco appointment is March (been having some problems with fluid, pain and swelling in my lumpectomy boob) but if I am still struggling after Christmas will bring that forward and discuss joint pain. I keep hoping it will ease off but I fear it could be getting worse!
Boobybaby, I think you can see from past posts that this is an extremely common problem with Letrozole. Your GP is exactly that, a general practitioner . Perhaps this is a conversation you should have with your Onco ? If you read the accompanying leaflet in the tablet box it does say ‘ arthritis like symptoms’. I had trigger finger after about nine months, so my Onco gave me a months pill rest. I was extremely anxious during that month, but fortunately it worked. Lots of niggly joint pains, but no trigger finger, thank goodness. Some people recommend fish oils to relieve joint pains, as well as exercise. X
I have problems with my right ring finger and pain at the base (palm side) of all four fingers. My GP also thinks it is arthritis though, despite having a high rheumatoid factor and suffering three auto immune problems, he doesn’t feel it needs to go to the rheumatoid department. I’ve been on Letrazole for four months and am convinced this new pain is because of it. How on earth can we ever prove or convince? I’m reluctant to stop unless it gets any worse or spreads as I want the extra protection but it gets me down. How common is this?
Just wanted to affirm I've had trigger thumb on anastrozole too. Had a very very painful cortisone injection a few weeks ago and it now seems to be under control. Guess this is a price some of us have to pay. Breast cancer the gift that keeps on giving!!!❤❤
Hi @Katylou, I have this same problem on Exemestane after 3 months of use... its painful mostly on left thumb as I’m left handed then the other side has developed the ganglyon cyst which I literally just had an ultrasound on today as I panicked not knowing what it is. My joint pops in and out on the left hand and have tried massage which somewhat helps for a day or two and use magnesium oil again helps briefly. Looking for a long term solution though as need to take this drug for many years to come... I dont really have much pain elsewhere, a bit in the knees and ankle joints. I will try the glucosamine cream that has been mentioned and massage with that. Hope this post helps you and all the best with getting on top of this not so pleasant side effect.
Came across this forum looking for answers to thumb pain while on Letrozole. Was wondering if others had the same issues. I started out on Anastrozole and had knee & hip pain. HIp pain was awful so Oncologist put me on Letrozole. Now I have excruciating pain in both thumbs. They pop in & out of joints. Now I'm going to Exemestane. Been off Letrozole for 2 weeks and still have the issue. Was wondering if this issue goes away and if anyone else has issues on Exemestane? Any information would be appreciated.
Been on Letrozole for over a year now, plus Ibandronic acid and supplements for calcium and vit D. The pains in my wrists amd fingers are tendonitis, trigger fingers and thumbs. As a musician i have used my hands excessively over the years. I am 66. Can't play my music and am very miserable. Pain worse in the mornings, but i exercise hands for an hour while waiting for the ibandronic acid to work. I have come off letrozole for over two weeks at the advice of cancer nurse and don't feel better. Have a week to go and due to see oncologist, i hope, soon. I am fearful of trying other pills as they sound terrible too. Are these letrozole effects forever?
Hello. Sorry to hear you’ve been in pain. Trigger finger/thumb is most definitely listed as a side effect in the patient information leaflet of several of the makes of letrozole I get. I’ve read of several cases of GPs not knowing this until a patient has pointed it out. On my front - and this might give you hope - the painful trigger thumb I developed on both hands within months of starting on letrozole has completely gone. I’ve been on letrozole three years and while I can’t recall when it went, I’d say it must be more than two years ago. I’ve still got slight swelling in the thumb joint but it is very slight and it is not painful. Thankfully I never had the joint pain/swelling that has afflicted others on letrozole. Best wishes.
I know this an old post, but I had to reply. Last November or December, after almost 1 year on Letrazole, I suddenly started having pain in the lowest finger joints (the base of the fingers) on both sides, but with the worst being the middle and ring fingers on the right. Super painful, even to lightly touch the spots. Waking me up in the middle of the night pain. After 3 or so weeks with no improvement, I started to worry it might be arthritis. But I’m only 57 with no family history, and NEVER having any of this pain before. I couldn’t believe arthritis could go from 0 to 60 in one day. So I emailed my GP, asking if it could be my Letrazole or if it was arthritis. In like 5 minutes, he replied saying most likely arthritis and I should take Tylenol. Period. Nothing about the drug. Hmmmm.
So I decided to Google it. Lo and behold, articles and posts everywhere about this as a side effect. A day or two later, I became confident that’s what it was when I developed trigger finger on both ring fingers, mostly on the right one. My oncologist had me go off the med to see what would happen. It became much less, but it was still there. But I’ve adjusted to the other side effects [hot all the time, fatigue, aches much like my fibro). And since it doesn’t make me vomit or even nauseous (as most drugs do), I didn’t want to try a different drug and possibly have worse side effects. Pain I’m used to. But it’s hard to teach teenagers when you’re vomiting, LOL!
Anyway, now I feel hopeful to hear it goes away eventually for a lot of women. Thanks all!
I know this an old post, but I had to reply. Last November or December, after almost 1 year on Letrazole, I suddenly started having pain in the lowest finger joints (the base of the fingers) on both sides, but with the worst being the middle and ring fingers on the right. Super painful, even to lightly touch the spots. Waking me up in the middle of the night pain. After 3 or so weeks with no improvement, I started to worry it might be arthritis. But I’m only 57 with no family history, and NEVER having any of this pain before. I couldn’t believe arthritis could go from 0 to 60 in one day. So I emailed my general practitioner doc, asking if it could be my Letrazole or if it was arthritis. In like 5 minutes, he replied saying most likely arthritis and I should take Tylenol. Period. Hmmmm.
So I decided to Google it. Lo and behold, articles and posts everywhere about this association with the drug. A day or two later, I became nearly certain that’s what it was when I developed trigger finger on both ring fingers, worse (by far) on the right one. My oncologist had me go off the med to see what would happen. It became much less, but it was still there. But I’ve adjusted to the other side effects [hot all the time, fatigue, aches much like my fibro). And since it doesn’t make me vomit or even nauseous (as most drugs do), I didn’t want to try a different drug and possibly have worse side effects. Pain I’m used to. But it’s hard to teach teenagers when you’re vomiting, LOL!
Anyway, now I feel hopeful to hear it goes away eventually for a lot of women. Thanks all!
Hi Maru and Nat!
This is funny timing as I've been meaning to post in this thread for a while.
That's good news from you on the thumb front, Maru. I have good news on that front too.
I had trigger thumb - it started several months after I started on letrozole - quite badly on both hands. It's gone, however, and I realised it had gone several months after I'd started long-distance cycling. I have no idea whether it had anything to do with the way I held my hands while on the bike but I thoought it worth reporting here anyway! I still have reduced strength in both hands and some swelling in the thumb joint on my right hand but it's not painful, just irritating.
I've been on letrozole for two years now. I've just had a follow-up DEXA scan and all was fine.
Good luck and best wishes to all of you.
I've been in letrozol for a year now. After the first couple of months, I started having pain in my fingers, which developed into a trigger finger, first in the left thumb and later in the right one. Like you, I think this has been one of the worst symptoms for me of the whole treatment (including chemo! although I was very lucky...).
However, after a few months, my thumbs seem to have gone back to normal! I can't say it's for good (fingers crossed) but they just don't hurt, can bend normally,... as if nothing happened (well, perhaps I can't bend them as much as I could before, but they are 100% functional).
I can't say exactly what it was that I did, but some things that I tried were ice at the base of the finger, where I could feel a little ball and stretching the fingers (e.g. resting the hand on a table and bringing all the fingers up).
In any case, there's hope your fingers will get better, too!
And I wanted to take the chance to say thanks so much to the whole community - without this blog I wouldn't even know I had trigger finger (my doctors didn't know about it). Good luck to you all!
I’ve been on Letrozole for six months and have developed problems with my hands over the last four weeks. I’m 46 and have never had any joint issues before. Really achey hands, hard to bend when I wake up - with visibly swollen tendons in my fingers with ‘lumps’ (which, so far, have reduced after I’ve painfully massages them).
Things that that have helped so far are arthritis compression gloves (particularly to wear at night), glucosamine cream to massage in, and cardio exercise seems to help too (for me it’s running or spin - my hands feel noticeably better after 15 mins of high heart rate exercise). But this is the worst side effect of the meds for me so far (and I think I’ve had quite a few - inc. the hot flushes, fatigue, inability to tolerate alcohol, generally achy joints and just feeling a bit unwell all the time). If anyone has any other ideas for treatment of this side effect I’d love to hear ideas!
That's not good. Hope you far better on letrozole. I have a weird tale to tell. As I've said here, I developed painful trigger finger on my right hand several months after I started on letrozole in Jan 2016. It gradually got worse, to the extent that I could no longer bend my thumb at all. However, that meant it was no longer painful. I also developed it in my left hand and it evolved the same way. I decided just to live with it; it was inconvenient but not painful. Then in March this year I started long-distance cycling. Now, five months later, on my right hand has disappeared and, while I still have a bit of a ganglion, the movement is completely back to normal. I'm wondering if it has something to do with the position I've been holding my thumb in while cycling. I also have much more movement in my left thumb, but it's gone back to triggery and painful. As I say, weird.
Interested to see this thread. I've been taking letrozols for six months now and developed trigger thumb and a swollen joint where the thumb meets my hand a couple of weeks ago. Will keep an eye on things over the next couple of weeks. Best wishes to all.
Nic, how are your trigger happy thumbs!!!! Just wondering what happened since February
Hi I too have trigger thumb in both thumbs after taking letrozole for about 3 months. I also developed dreadful pains in my shoulders neck arms and beginning to go to hips. I saw my oncologist yesterday and she told me one of the side effects of letrozole is that it advances arthritis by 10 years. She immediately took me off letrozole and put me on tamoxifen. Here's hoping my thumbs go back to normal and the excruciating pain goes. Also hope the tamoxifen doesn't have other equally horrible side effects! I'm so grateful that we have a future to look forward to when others aren't't so lucky
Thank you so much for replying - its reassuring to know that the injection had no lymphodema side effects for you, and that it solved the problem. I'll persevere for a bit longer just to see if it resolves itself, but it is useful to know that I could try the injection and hope it works as well for me as it did for you.
When I searched back through previous topics on Trigger finger/thumb I found one where the writer said that she had it for a few weeks but it cleared without treatment, so I'll wait a bit and hope that happens for me. I'd thought I was lucky to get away with no obviouos side-effects for the first 4 month on Letrozole - I hadn't considered that they could start at any time...just another annoying aspect of breast cancer !
It makes you realise how useful these forums are as you talk to people who have been through the same thing whereas my GP did not even realise that trigger thumb might be linked to Letrozole (or other AIs) and therefore could not predict how it might progress.
Hi Nic, I had trigger thumb in both thumbs whilst taking animates for only 16 days, in 2015 After 6 weeks it got to the point where I had to make my own splint to stop it locking as I am a secretary and was stopping me doing my job.
in 2010 I saw a hand specialist for surgery on my wrist that I had broken and rang him, he saw me gave me a steroid injection in both hands and it went within 2 days that was April last year. I too have had node clearance and was worried, he put my mind at rest and said there was no evidence of this causing lymphodema as he is only putting in 1ml of stuff. He put the injection at the base of my thumb on the inside. I trusted him and I have had no effects of lymphodema.
i took this course of action as the trigger thumbs had affected my quality of life so much.
just thought this might help you decide. Only note I had this done on both hands and then had to drive 40 miles home and it wasnt easy as it does throb and hurt for a couple of hours but after that I have not had a problem
I also have Trigger Thumb which started in Jan this year (approx 4-5 months after I started on Letrozole). Obviously it may not be due to Letrozole, but I've not had it before and haven't had any injuries that might have caused it.
At first it was an interesting novelty as it just 'clicked' a bit when I first woke up. However its got progressively worse over the last 4 or so weeks and I now have to use the other hand to gently bend the thumb joint to get it moving. It's not so bad during the day but is sometimes painful, and it then gets worse again in the evening.eg this evening its stuck in the straight position and I cant bend it without using my other hand to move it.
I went to see my GP last week - she had not heard of a connection between Letrozole and Trigger thumb, but did find it when she checked on her computer. She said the normal treatment would be firstly a steroid injection, and if that didn't work then a small operation to release the tendon sheath.
Unfortunately for me the hand that has the trigger thumb is on the arm that has had a lymph node clearance, so I'm not keen to have any injections/surgery unless it becomes unbearably painful as I dont want to risk lymphodema.
What I really wanted to know was whether I should be resting and or exercising the thumb joint, and whether it might get better of its own accord, or when I stopped Letrozole (in 5 or 10 years !!!). GP could not really say as she did not know how Letrozole-induced trigger thumb might progress.
The GP suggested I went to the physio dept to collect a thumb split and to wear that at night. Its a sort of stretchy wrist strap with a slot for the thumb which has a rigid plastic strip alongside it to hold the thumb straight; you can adjust the thumb slot and the wrist strap with velcro.
I also asked the physio if I should be resting or exercising the thumb but she didn;t seem to be sure either! She suggested wearing the splint at night, then trying to use my hand normally during the day. She also suggested exercising the thumb gently a few times a day by moving it through its full range of movement eg trying to bend the joint, then trying to bend the thumb across to the little finger while the hand is flat.
So far there's been no improvement, though I've only used the split for 4 nights so far.
I'd be interested to hear how you get on.
Has your consultant discussed removing your ganglion? I had one removed from the base of my ring finger a few years ago (pre BC). It really wasn't a big deal - local anaesthetic, big boxing glove pressure dressing for a few days then normal dressing until stitches came out. My only regret was that I put up with the pain and triggering for as long as I did instead of just getting it dealt with.
I have been taking Letrozole for 7 months and my joints have got worse, I have arthiritis in my hands and knees especially, my knees feel worse but I have for years taken Glucosamin with Chrondoitin which has always helped, also take one cod liver oil tablet a day Another thing that helps is Rosehip Syrup, either neat or it is nice as a hot drink. I still play golf and garden just takes a bit longer to recover, but I find that if I don't do anything then the joints are worse and it takes longer to get going again. I am determined to remain an active 65 year old. Not taking the Letrozole is not an option as the thought of the cancer returning is far more worrying.
Take care and try to keep going
I had triggerfinger a few years ago - pre bc/treatment. I had put my finger joint under too much pressure when carrying something awkwardly.
I think trigger finger is slightly different to joint pain, the cause being that the tendon catches when it should slide through a sheath in your hand when you move your finger. Mine was quite bad, I'd wake at night when I bent my finger inward in my sleep and it became locked causing my hand to ache. Saw the GP who said surgery on the hand was very difficult, said it might pass, and couldn't really make any helpful suggestions.
To take the pressure off the finger and avoid it locking and catching on the shaft (my thinking being this would give the tendon a chance to heal) I rolled up some socks (a big enough mass that when on the palm side of my hand the sock mass would stop my finger bending in) and held the sock ball in place by wearing another sock over my hand. I called it a sock-MIT! Wore it in bed on the affected hand every night for quite a few weeks and the trigger finger gradually stopped getting locked. My finger is now fine with no need for sock-mits!
Suggest you give it a go in case the medication isn't the cause (or the whole cause).
Please let me know if the above description isn't clear.
Hope it sorts
Hi, I have been taking Letrozole since sept 2014 and suffer aches/pains which are very painful at times. Last year my wrist/forearms were very painful and wearing a wrist support, the type repetitive strain sufferers wear helped a lot. This lasted about a month. I also had trigger finger which also lasted a month, and cleared up. I didn't do or take anything. Now I am having problems with my feet and particularly Achilles Tendons. Walking after resting is painful but once I get going I am fine. I believe that our soft tissues need and are affected by our hormones and the Letrozole suppresses what our bodies make naturally. I have also been told that the pain migrates so it can make a surprise appearance anywhere! Exercise definitely helps along with massage and generally keeping the joints moving whilst resting..hope this is of some help.
Hiya - I have been on Letrozole for 3 months as I have bone mets to hips pelvis and femur and its hard to know whether its the pills or cancer giving me the ache and pains !!!
I have been taking a simple cod liver oil pill daily and it wasent until I missed a few last week realised I was a lot more creaky and achy.
Its a very simple cheap tablet and maybe worth trying as Letrozole, Arimidex or Tamoxifen are all a very big part of your treatment plan . They all seem to have side effects of some sort .........think I get most of them on Letrozole but its mind over matter as if taking this little pill everyday does what it says on the tin - it will be worth it !!!!
On one of the other boards a couple of ladies have been taking Devils Claw to help .......but you need to check with your Oncologist first to be sure it wont upset any other meds you might be taking.
I have been taking Letrozole for 2 and 1/2 years now.
Having suffered with trigger finger with a ganglion at the base of my finger for over a year my hand consultant wondered if they maybe connected to the Letrozole medication. After research, particularly on Cancer Research website, have found the very specific side effect mentioned. I am seeing my breast consultant next week and I feel sure he may want to change my medication. I don't know what to ( am post menopausal) and the same research site also listed Arimedex having same side effect. Has anyone out there also suffered the same trigger finger complaint and how have they dealt with it? Does it stop once one finishes 5 yrs medication? Do all the various aches and pains infact stop, or is there no going back.
Any thought and advice gratefully received.