Hi all, Having had mastectomy/reconstruction last April and going through chemo/rads ending November08 I thought myself very lucky as didnt suffer too much. Since starting to take Arimidex last September my fingers and joints are driving me crazy. The tips of my fingers feel tingleing 24/7 and joints ache like mad. Is this down to Arimidex? Anyone else suffered the same? Thanks Lyn
Hi Lyn
Whilst you wait for the other forum users to reply with their advice and experiences you may find it helpful to have a look at the fact sheet on arimidex. I t can be found at the following link:-
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/118
I hope you find this helpful.
Kind regards
Sam (BCC Facilitator)
Hi Lyn,
I started taking Arimidex last August whilst still on chemo.I had a painful right knee initially for about a month but then it disappeared and I felt ok until early December when the aching joints started and I’ve found particularly my fingers to be extremely painful first thing each morning - it feels like they’re going to break and it takes a while for me to be able to bend my fingers fully. I can’t stand properly and have to walk doubled up until I get downstairs and get gong and then I’m not so bad during the day. The fingers start playing up again in the evenings now too! I recently read a thread on here and so on advice from this have just started taking a supplement of combined glucosamine,chondratin and MSM which people have found helps to ease the joint pain. I only started taking it along with a cod liver oil capsule on Saturday but I’ll let you know if it helps to improve matters. It is frustrating to feel like I’m elderly at 39!! The breast care nurse told me it does get better but didn’t tell me when!!
Anyway I hope that things get better for you but I certainly have found my fingers to be a problem - hoping these supplements might help - anything’s worth a try and it’s certainly not going to do me any harm!
Take care and let me know how you get on.
Anne
Hi Lyn, i also was put on Arimidex after unsucessfully trying Tamoxifen.
I was on Arimidex for 6 months and it was awful. The side effects with the aches and pains in all my joints were unbearable and no supplements seemed to help. I was reliant on painkillers to get some relief.They don’t do much for your sex drive either.
After seeing my onc in January i have been put on some new tablets and they are fantastic. I have no side effects, hardly any hot flushes and my sex life is picking up slowly too. Apparently the ones i am on now are expensive and i was only given them for 2 reasons, firstly i had stopped the Arimidex as i couldn’t cope with the effects of it and also i am 53 and after my mx high risk.
The tablets are called AROMASIN and they are amazing after the horrors of arimidex.
Hope this helps and gives you something to raise with your Gp or onc.
Hi everyone, Im on Arimidex (since August 08), and had the painful fingers and knees, but Ive just been reading a thread on here under “staying on hormone therapy please advise” that msmolly has posted, called askapatient. Now Im wondering if the painful shoulders and arms are due to Arimidex and not muscles healing? Im having physio, but I wondered if anyone else has this (like frozen shoulders). Lindalou in Cornwall - wondering how your shoulders are now?
Take care
Shirley
x
Yes, I have been on arimidex since last May and suffer the painfull joints especially after being at work all day. It feels like your body is screaming at you. Very useful to hear about aramosin.I seem to keep needing painkillers when it gets bad.
Rachy
Started Arimadex 2 months ago and almost immediately noticed how much it impacted on my shoulders - where I already have arthritis.
It’s ok in the day but I find I wake every 1-2 hours throughout he night- mainly thro’ pain in my shoulders and upper arms but also thro’ the hot flushes.
My GP prescribed Amytryptoline 20 mg - which didn’t touch it: he said I could have a higher dose but it would probably make me dopey in the mornings.
This week I 'm trying 2 Co-Codamol last thing at night and 2 more when I wake ( after 4 hours)- to see if this helps. I was previously also on Diflefenac (Voltarol)- but didn’t find this helped.
I also have arthritis in my knees but thus far this doesn’t seem to have been worsened by the Arimadex.
Hi topsymo, I didnt want to take Amtryptolin either, my doctor gave me Ibuprofen and paracetamol (500s) 8 paracetamols and 3 Ibuprofen, which did take alot of the pain away, but think Co-Codomol are quite strong - but was told that Ibuprofen are for muscle pain so scrapped the paracetamol and took more of them! You are so right, its at night when you move thats so painful, and I dont know about you, but when Im tired everthing seems worse! Dilfefenac didnt work for me either, (I sound like a right drug addict!)
take care
Shirley
I have also been on Arimidex since December, at first the aches and pains were manageable but as time has passed I have become more and more disabled by it.I cannot walk further than a few yards as the bones in my feet and knees hurt so much. I have had to give up all the crafts I enjoyed so much, sewing, quilting,knitting etc as I cannot grip properly and the constant burning and numbness from carpal tunnel stops me even opening a jar.I cannot go back to my job as a groom/rider as I cannot hold the reins to exercise the horses oe even groom the horses.
I dont sleep to well as the pain wakes me throughout the night, I guess I’m a bit more unlucky in that I cannot take anything more than paracetemol as I’m on clexane.
BCN nurse has said to try and persevere as sometimes the side effects do get better over time, but reading all the posts regarding Arimidex, this doesnt seem to be the case.
It has also been suggested that I could change to Femara or Aromasin, but surely if they are all AI’s, they will have the same side effects, they all do the same thing.
If my long term prognosis was better, I would seriously consider giving them up, quality of life etc, but I wont do that as I am clinging to them as a lifeline, rightly or wrongly I have put a huge amount of faith and hope in them.
I guess I just have to come to terms with being less mobile at 45 than my 82 year old mother!
I have been on Arimidex for 5 1/2 years now and find the pain in my
legs has become worse over the years. I have tried everything from aspirins to inflammatories three times a day. I find it increasingly difficult to work for long periods and sleeping at night is reduced to a couple of hours at a time. I have had ex rays and scans to make sure nothing nasty is lurking but all have come back okay (thank goodness). I recently went back to the oncologist who has given me some co-dydramol to take at night but these only work for a couple of hours so I might increase them. Sorry to sound so negative but I really am glad to be here but would love some relief from this pain.
Porky Pami.
Hi there, I had been on arimidex for a year and have also suffered with bad joint pain and feel about 90 when i get up in the morning!!
For the past 6 months i have had really painful thumbs and they click and lock and i have to bend them back and it is so painful!!
I have just had 2 months break from the arimidex and the thumb pain has eased thank goodness!! so i thnk it must be down to the medication. Start tamoxifen tommorow hope that will be easier!!
Helenxx
It’s silly but I was actually a bit concerned that I WASN’T getting any joint/muscle pain from arimidex (apart from occasional muscle cramps), and I’ve now been taking for over a year. Then I came across a trial with selected patients taking high dose Vit D to alleviate these symptoms (began in 2006).
I don’t know what’s happening with the trial, but as it happens I’ve been taking high dose Vit D3 since I had my op in Jan 2008, as there seemed to be reasonably convincing evidence that this could help prevent recurrance. Vit D also helps absorption of calcium, which may also be beneficial as arimidex tends to deplete bone mass. Lately there have been articles in the press about the possible benefits of VitD for breast and prostate cancer. Nothing’s been proved of course, but it may be worthwhile to try taking VitD3 supplements to see if this helps with these awful joint and muscle pains.
Highball
Hi highball…Just wondering what a high dose of vit D would be. I am taking a combination chewy tablet x2 a day. It is called Adcal - D3. (calcium carbonate (1500mg) and vit D3 (4oo i.u.)not sure what i.u. means! Interesting information though.
I have just started arimidex, and have been wondering if I will get the side effects that nearly everyone else seems to be having.
Helenx
Hello Nell. I couldn’t find out what they meant by a ‘high dose’ on the trial. I take 5000iu per day. My husband has prostate cancer and takes 10,000iu (iu means international units, not that I’m any wiser!) We don’t take it if we’re getting a good dose of sunshine daily (ie, on holiday.) This is a much higher dose than you can buy over the counter in one capsule, so we get it from an internet site. However, we have looked into this very carefully and are happy with these doses for us as trials with much higher doses have not revealed any toxicity. 20 mins of summer sun can give 20,000 iu so that puts it in perspective a bit. I’m not necessarily recommending the dose we take to anyone else, but thought it might be worthwhile for ladies with painful joints or muscles to try at least the normal dose of 400 iu and maybe increase it if necessary.
Anyway, here’s hoping you get no aches and pains at all!
Highball
Thanks for the info I will do anything to get rid of this pain and do the things that I used to do. I have been told that I need a hip replacement but I’m not too sure! I will go out and get some VitD tomorrow and let you know how I get on. What is strange is that I went to Aus. earlier this year and the aches and pains were much better. Fingers crossed!! x
Thanks Highball…that information is really useful. I think as far as taking arimidex…I’ll have to just suck it and see. As yet no side effects, but very early days from reading about others. so fingers and the rest crossed!!! It sounds like the sun does have lots of healing rays!! So I’ll enjoy it while its here!
Helenx
I also changed from Arimidex to Aromasin - they do the same thing, just a different brand and have to say the aching joints are much better now.
Still there, but a lot easier.
xxx
hi, I’ve only been on Arimidex for 1 month, the only side effects i’ve had so far are awfull hot flushes, there worse than when on the change, but thankfully no aches nd pains yet, keeping my fingers crossed, early days yet…
sunset
I started taking arimidex last July just before my mastectomy for breast cancer. I was okay until January this year when I started to get the tingling fingertips and awful pains in my joints. It’s mainly my knees that are affected and my hands in the mornings when I get up. But hey if it’s keeping the monster at bay!!! Mind you I’d like to know how others cope, are herbal remedies any good or a pain killers?
I have been on Arimidex for nearly two months now , and like Helen have been prescribed Calcium tablets with Vit D3 by the Oncologist as well…are we the only two who have been prescribed these…are they a new idea ? Would be interested to hear about that from others.
So far my side effects have been very mild…a few hot flushes if it is warm in the evenings…none in bed though. And my knees are a little creaky on the stairs , but then they were before my BC.
Hope everyone is coping OK…enjoy the weekend .
Hugs,
Jill