Hi! I’ve been on Arimidex for a year and am suffering vey bad joint pains (mainly in hands, feet, hips, elbows and knees). I am 60 and have had several blood tests which prove (apparently…) that I have a small amount of natural degenerative arthritis (“wear and tear”) in my big toes only and my first bone scan shows “normal”.
Can any BC professional/other sufferers out there tell me if the joint pain goes away without leaving permanent damage to joints when one comes off Arimidex? Or does the joint pain continue for ever and leave damaged arthritic joints which don’t recover?
Hi Desiree,I seem to have the same problems as you and would also be interested if anyone could answer your question also why does this drug cause so much discomfort and pain?
Hi Desiree
I’m about to start Arimidex and am very interested in this. I had a baseline bone scan done last week, which looked ok. I’m not looking forward to painful bones and joints. My onc has said she’ll change me to something else if I have problems though.
I don’t know about long-term side effects but having bone secondaries I’ll be on some form of treatment for ever anyway - but just wanted to say that I’ve been on Arimidex since July and I hate to say it but I think the joint pains are getting worse. They were bearable until a few weeks ago, just bad first thing in the morning, but now my ankles feel as though I’ve sprained them both and my hips are very stiff and painful too. Will mention it when I next see my onc but the side effects are actually better than the alternative as far as I’m concerned! I always have this feeling that the drug/treatment must be working if the side effects are bad - still getting bad hot flushes too!
Sorry I can’t be more hopeful about this drug, hope you get some answers soon
Desiree - I’ve been on Arimidex for nearly 3 years and the joint pains I had in the early months have improved. I am 71 and have arthritis in both knees but I do find exercise helps enormously even if I have to force myself and I am still a keen skier.
I am under the impression from my oncologist that at the end of 5 years, there should be no more side effects and no long term damage. I can only say that the first time I had BC in 1990, I was on Tamoxifen with such awful side effects that I had to stop after 3 years and there were no side effects after that or any apparent damage. Keep smiling and here’s a hug X
I’ve been on Arimidex for 12 months and the arthritis in my shoulders has definitely worsened during that time- but then again, who’s to say it might not have got worse anyway?
I also have mild arthritis in my knees but this has certainly NOT worsened over the past year and I have had none of the ankle, foot or hand pains or specific early morning joint pains that other people have mentioned.
There really seems to be no consistency re drug side effects- eg my hair has only partially re-grown, 12 months after treatment finished- but is this due to chemotherapy or to Arimidex? Baldness does not seem to be a common side- effect of either - I’m just unlucky on this one I guess.
I’ve just started on arimidex and the first month the joint pain was terrible - especially in my knees and hips - but it is getting easier.My consultant said to try cod liver oil and glycosamine - dont know it it has made the difference but as he said it wont do any harm!!
This is my first message - couldn’t have managed without being able to read messages when l felt down and couldn’t tell anyone but felt so comforted by everyone else on the message board.Thank you all you lovely people.
hello all,
I’m been on other forums in the past, but just found this one.
Ive been on arimidex for nearly a yr, I get bad joint pains most of the time, last week had really bad back, sat in chair for 3hrs, couldn’t move so painful. given anti flamitory tablets which have helped.
I think were all hoping that we dont have long term pain, but by the sound of it were not going to be that lucky
Good luck to everybody.
sunset
Hi
I have been on Arimidex for two and a half years and some days I think the pain is getting worse. My finger joints have been much more painful recently - don’t know if it is the cold weather. I just try to liv ewith it but sometimes I feel so old (only 53!!) another joy of this disease?!
Hi all, been on Arimidex 6 months and joint pains definitely getting worse. Only controlled by strong pk, anti inflammatories and anti depressants to sleep at night. (not for depression but pain relief). Have chatted to Onc about it and he is keen for me to stay on it unless I absolutley can’t stand it. My finger joints have been worse recently too Suzie, especilly first thing in the morning when I have to almost grit my teeth to move them. Like you I am trying to just live with it but it does get you down Can’t hel thinking there must be some supplement that can ease things, it’s almost like all the joints need oiling Di
I have just come off the phone with my bcn about this problem. I’ve been on Arimidex for nearly seven months now and the joint and back pains are definitely getting worse. I also have bone mets so it’s hard to determine the difference but it’s a different sort of pain to the mets pain I had at the beginning. I do know that bones can hurt while they are healing so am hoping it’s that. I’m also on three-monthly Zoladex which I gather can also cause this - as well as Pamidronate.
I’m not due to see my onc for another three weeks but the bcn is going to ask her if I should try coming off Arimidex for two weeks to determine if it is that which is causing these symptoms. That scares me a bit as I like the ‘insurance’ of being on it, but she said that if it proved to be the case that it was the Arimidex causing the pains, they would switch me to another AI at the next appointment.
Hi, thanks Ann for the advice. I had an appt this morning and discussed problem with Oncologist. He recommended coming off Arimidex and trying Tamoxifen for a month to see if it’s any better. In my case Arimidex was only slightly better for me so not losing out too much by trying. He said if the joint pain hasn’t improved by now then it’s not going to and he felt 5 years was too long to keep taking so many meds to control it. Anyway, I’ll see how it goes and let you know if there is any great improvement or not. Di
MY finger joints very painful in the mornings, I havnt been able to clench a fist for months now, so sometime thats a problem when trying to open things.
Think I might try some cod liver oil tbls, see if that improves things
x
I’be been on Arimidex for about 6 months now. The arthritis in my upper spine has got considerbly worse. It’s very difficult to say what is caused by the tablets. I have peripheral Neuropathy caused by the chemo and find it painful to walk, and arm and breast Lymphoedema caused by the Rads. On top of that I get very tired after doing anything. My hair started growing reasonably well after chemo but that has got very thin on top now so I’m going back to wearing a wig for “going out” when a baseball cap isn’t the right thing to wear, ho hum, such is life
Helen- you sound similar to me but maybe with more severe symptoms. You do not give your age so if you are younger , I really do sympathise. I am now 66 and have been on Arimidex for 14 months. In addition to the hot flushes and night sweats I also have breast lymphoedema which I think stems from my axillary clearance rather than rads. I also some peripheral neuropathy from the chemotherapy. I had some arthritis in my shoulders before BC and it is definitely a lot worse ( I am waiting for shoulder surgery at the moment) ; also some new arthritis in my fingers. The problem is that maybe all this might have happened anyway- how are we to know?
For me the most distressing post treatment ‘side-effect’ is my hair, which has not re-grown to anything like its former state and like yours is really thin on top. I never go outside my home without my wig and it’s now nearly 18 months since I had my last FEC.
Sometimes it’s a bit hard to be grateful for the life- saving treatment we have been given isn’t it!? (especially as in my area no-one wants to know you once your active treatment has finished; even if you are Grade 3, stage 3 you are really cast adrift with only yearly appointments & in fact I have seen either my surgeon or my oncologist - just their registrars at subsequent appointments- as for GPs- mine as good as told me that i was now ‘cured’!
Hi all, it makes you wonder if anyone has ever stayed on it for the full 5 years I’m starting on arimidex on monday. On reading up I have not found anything good about it so many people seem to suffer aches and pains. I take co-dydromol for arthritis but it is managable and only take the pain killers when I really need them I did tell my onc and he said if the side effects get to much we will have to weigh up if it is worth continuing with it but he did not speak of an alternative! As one of you ladies said we need to continue to take this pill to help to keep the cancer away and the comfort of knowing we are doing something so I will try and let you know.
I went on chat thursday evening for the last 15 min it was great(although I’m a bit slow on the keyboard lol)take care everyone love from Linda xxx
I stopped taking Arimidex in August after doing the full 5 years.
All symptoms were worse in the first 6 months, especially hot flushes and joint stiffness.
My ‘Mrs Overall’ walk for the fist few moments after getting up from bed or fromm sitting still hasn’t quite gone away, but it’s improving.
I was diagnosed with osteoarthritis in one knee a year ago - but whether this was a consequence of Arimidex or a consequence of being 56 I don’t know. In any case, sevearl weeks can go by without even a twinge.
So - for me joint pain decreased over the years of taking Arimidex and, while I still have some joint pain, it’s much less than it was and I don’t know how much of it to attribute to Arimidex now.
One of the listed possible side effects of Arimidex is hair loss. I never thought for a moment I had this side effect, but I’ve always said my hair is thinner since chemotherapy, especially at the front. Last week my hairdresser told me I had a lot of regrowth - especially at the front.
I love the picture! I’m coming up to the end of my 2nd strip of Arimidex, and it’s gone faster than the first. I won’t do the maths to work out how many more there are to reach the target you’ve reached!
Can’t hel thinking there must be some supplement that can ease things, it’s almost like all the joints need oiling 
Di