After recurrance of Breast cancer in early 2010, and Chemotherapy (FEC x 3 plus Taxotere x 3), I have been prescribed Aromasin (Examestane). Three months later the main side effect I suffered from was severe joint pain, in particular around my knees. I did have Osteo Arthritis before I started this drug, but was able to do most things e.g. walking without any aid. Now I am reduced to using a stick, have had to have a stair-lift installed, and am waking once or twice during the night unable to even turn over in bed. My G.P. has suggested I take paracetamol along with my pain killers to see if that will help, but so far I have not noticed any improvement. I have had my knees ex-rayed just to make sure there are no other problems, and am now waiting for an appointment with my Oncologist to see if he could have any answers for me.
Does anyone else have a similar problem and if so, have they any advice they can pass on to me? I know this drug may be helping to keep me alive, but at what cost?
Hi Pixiecut
I’ve been on Aromasin since the beginning of September last year. My main problem was headaches. I’m a migraine sufferer anyway and Aromasin made them much worse. I was waking up in the middle of every night with a migraine headache. My GP gave me some tablets which seem to have sorted that out.
However I have developed painful joints especially my knees which are quite bad in the morning when I first get up. Sometimes I have to go downstairs on my bottom. My ankles and feet are stiff and painful too but it very quickly wears off and by the time I’ve had my customary 2 cups of tea I’m OK.
I do find that I stiffen up if I sit for too long as well.
Swimming seems to help with my stiffness but maybe that isn’t an option for you.
I’m sorry that you’re having this awful side effect. Its just something else on top of what you have to cope with already. Not a lot of fun.
I’m sorry I haven’t been much help but I do hope you get it sorted out.
Love to you
Jan xxx
Hi Pixiecut,
I switched from tamoxifen to Aromasin 4 months ago and I too find it is causing joint problems, though not as bad as yours. Like Jan, my knees, ankles and feet are bad first thing but that wears off for me too. It gets bad again if I sit for too long as can happen at work if I’m engrossed in a particular thing for several hours. My hands are worse and I have to keep exercising them during the day and if I wake during the night.
I do some exercise for hands, feet, ankles and knees before I get out of bed to loosen it all up a bit. I also try to do some gentle exercises from the Lebed Method system of exercises several times a week and I take a high strength glucosamine, chondroitin and MSM supplement.
Apart from that I feel much better on Aromasin than I did on tamoxifen and I think that makes it easier for me to cope with the joint problems.
As well as speaking to your oncologist you might get some info from your bcn - it was mine who first suggested the glucosamine for stiff joints as ours are generally happy to pass on anecdotal info from other women.
Hope you can get somewhere with getting relief.
Eliza xx
Hello Eliza, thanks for your reply. I have not heard of these supplements and will try to get up to our local Health shop in Lanark over the weekend to see what they say. They always check if there might be any problems with interaction to the drugs you have already been prescribed. I will get back to you if I feel any improvement of my symptoms. Take care - your little pill popping friend!
Bumping it up for Wayne x
hi,
Just coming up to my ist year on Aromasin, first couple of months were ok, then the rot set in, the aches and pains in my joints i found very hard to deal with, they are now starting to ease off a bit, i dont know if that is me getting used to them but also i have taken up going to a gym and i do think the excercise is really helping, i was not a lazy person as my job is quite pysical, but the gym is using all of my joints and muscles and i really feel alot better ( though cant lose a pound in weight)
Annie
Hello Charhie, thanks for your input on my problem. Sadly my gym days are finished (I think) as there is no way I could tolerate the strain it would put on my joints. But you are right in that exercise is absolutely necessary to keep the knees working. Early in the day and last thing at night I have to use my chairlift, but during the day I try to get up and down the stairs normally, though it can be pretty painful. I think it is one simple way I can make the old muscles work as they are what keep the joints moving. Also I go to Aqua exercise at my gym now on the advice of my Doctor as I can do Aerobics supported by the water. So I shall just have to keep popping the pills to try and tolerate the aches and pains!
Hi
My bc was diagnosed feb 2008, because i am post menopausal and have hots flushes I was prescribed aromasin, 3 months later I had severe joint pain in my wrists and ankles, couldnt sleep at night, hobbled around during the day;I do have mild carpul tunnel syndrome in my wrists and early arthrits in my ankles.
I phoned my oncologist who told me the problems are being caused by the aromasin and because these drugs are fairly new they do not know the long term effects, he told me to stop taking them, 2-3 weeks later the pain had disappeared. Before the bc I was physically fit.
I am now on tamoxifen for 5 years because its better than nothing but have hot flushes every hour and am seriously considering stopping these.
I posted elsewhere about waking most days with a headache and today I decided to go to my GP as I needed some repeat prescriptions anyway.
I wasn’t sure if the problem was my sinuses, but he wasn’t convinced. He has prescribed a nasal spray but he wants me to try changing the time of day I take the aromasin and if necessary try stopping it for a week and see how I get on. (This is something I have already considered doing).
If the headaches stop when I stop taking Aromasin he wants me to speak to the oncologist.
He also commented on the fact that it is a new drug and they don’t know what problems people will have with it.
Good luck all.
Hello. I’ve been on Aromasin for three and a half years. I had no side effects at first apart from horrendous hot flushes which I’ve had ever since coming off HRT. During the second year I started to have joint pains. They can be all over my body but seem to be in a different place every day - one day it’s hands, then the next it’s legs and so on. These pains have now lessened to some extent although I’m still very stiff first thing in the morning and when I get up from a sitting position. I’ve also had trigger thumb on both hands.
I had a bone density scan just before starting on Aromasin which was very good. I asked if it was necessary to take calcium while on Aromasin but was told there was no need. I had a second bone density scan last Autumn which showed a marked deterioration so I’ve been started on alendronic acid and have put myself on calcium.
My hair has always been thick and strong and came back very well after chemo. Recently, however, the condition has changed and it now feels very fine. It’s thinning noticably and I’ve got the beginnings of male pattern baldness. Wonderful !
I had posted this on an arimidex thread as I think the side effects are pretty similar but thought I would copy it to this one now.
Good luck everyone. Anthi x
Hi
I’ve been on Aromasin since September last year.
I do get joint stiffness but this morning I feel 90, I’m 64.
I had problems with headaches Merlyn. I already took a daily tablet to control my migraines. I saw my GP and he upped the dose of that tablet and that’s solved the problem.
The tablet is Verapamil and it’s for cluster headaches although it’s primary use is high blood pressure. I was originally on a half dose of 120mg I’m now on 180mg. Might be worth discussing it with your onc/GP if the headaches continue.
The question I want to ask you Aromasin ladies is if any of you have pins and needles in you hands or hand. Over the last few days I’ve started with them just in my right hand. The Info with the medication does day pins and needles but I don’t know if you can get them in only one hand and I don;t know if it;s down to Aromasin.
I’d be very grateful to hear anyones experiences. Thanks
Love to all.
Jan
Hi Jan
Thanks for the information about Verapamil, I am also a migraine sufferer but this headaches starts right in the front of my head. I take Zomig for migraine and this does help with this new headache but I can’t take it every day so I hold out unless it is really severe.
I will mention Verapamil to my GP and see what he says especially as my blood pressure is on the high side, it may solve more than one problem.
Ta Merlyn
Hi Jan,
I get pins and needles in my hands a bit. I think what I’d say is that I think I am now more prone to pins and needles that I was before Aromasin. Interestingly most side effects, including joint pain, stiffness and pins and needles, are worse in my right side than in my left.
My hot flushes are fewer on Aromasin than they were on tamoxifen.
Eliza
Hi Eliza
Thanks for your reply. My pins and needles are in my right hand too. Not so bad today since I’ve been swimming. My hand felt very strange this morning. Like the feeling you get when the circulation has been restricted and it’s not quite back to normal!!!
My aches and pains are from my lower back down. Some days my knees are really bad but it’s mainly my ankles and feet which are worst my left foot is very stiff sometimes. I have to twiddle my ankles a lot if I’m sitting for any length of time.
I was on Tamoxifen too, but it made me very depressed and the hot flushes were terrible. I don’t get them now at all which is a bonus. I did say that I would stick with Aromasin whatever the side effects provided it didn’t give me migraine or cluster headaches. It did but as I said that problem seems to have been solved now. The only other side effect I get is extreme tiredness. Some days I could curl up in a ball and sleep all day!!! I can’t because I have too much to do but that’s probably a good thing.
Keep well and take care.
Jan x
Hi Merlyn
I used to take Zomig but sumatriptan was better for me. I now take Maxalt Melts (Rizatriptan) which are little wafers which disolve on your tongue but, as you say, you can’t take them every day. That is why originally my GP gave me Verapamil.
My GP told me that if you get more that 4 headaches a month they are cluster headaches not migraines. I did the trials for sumatriptan with my GP in 1997. That was when it was only available in injection form and you had to inject yourself when you felt a migraine coming on. He’s very knowledgeable on migraine and cluster headaches.
My Aromasin headaches were at the front of my head too, and in my eyes, I hate that!!!
When he gave me the Verapamil,it must be around 4 years ago, he told me that it was what a Neurologist would prescribe. I have to say that they have really worked and I don’t get anywhere as many migraines as I used to. Before if I had a severe one I had to have a morphine injection and was in bed for 2 or 3 days so Verapamil has really been brilliant for me.
I really do hope you get some relief from the awful headaches, they make life so miserable.
Take care
Jan xx