Hello, I have been on Arimidex for a year now. Finally the hot flushes are less frequent but now I have terrible joint aches for which the doctor has put me on 8 paracetamols a day, which have not really helped. I also have hives, but these are now under control and my recent sickness is now under control with anti-sickness tablets.
I have been thinking about changing to Aromasin or Femara, however, is it better the devil you know?
Has anyone else changed and have they found any real benefit?
I would appreciate any feedback.
Thank you for being there.
xxx
Hi AnneMarie
I started off on Tamoxifen last July and I felt terrible on it, so I saw my Onc in Sept and got it changed to Arimidex, which I found even worse than Tamoxifen. I had terrible night sweats, weight gain, terrible pains in my legs, knees, back, and carpal tunnel in my hands. I could hardly walk, I saw the Onc in March and I asked her to change it, I had done some research so knew there were others. I am now on Aromasin (Exmestane). I have been on it for 3 months and I feel so much better. I am seeing the Onc again next week. I also asked her to refer me to a rheumotologist for my joint pain, (I have got arthritus) which she did. I have had x rays and my knees injected and some tests for the carpal tunnel. I do not believe it is worth suffering and I think it would be worth you pushing for a change of meds. I was glad I did. As with everything they always start you off on the cheapest drug to see if it works, but if it doesn’t in my experience they will change you to more expensive medication.
I hope this helps good luck
Sarah x
I would also be really interested in others experiences changing from Arimidex to one of the other AI’s.
I have been on Arimidex for 6 months and my life changed for the worse since taking it, I cannot walk without pain and the headaches are terrible, I cannot sleep and have gained so much weight. I have asked my onc about changing meds, but he seems to think they all have similar (or worse) side efects to Arimidex, as you say, is it better the devil you know?
I understand the reasons I am taking this med but sometimes its just so hard to come to terms with how my life is now with the side effects of all the treatments.
SS
Hi All
This makes for interesting reading. I have been taking Arimidex for a year now. The pain in my bones is constant but some days much worse than others. Hands, feet, hips, lower back etc and lately seems to be in my skull as well(?). I haven’t slept through the night since my BC was diagnosed in Sept 07 - night sweats, aches and pains etc. I have also put on 3.5 stones and grown from size 12 to size 16! My ONC has just changed me to Exdmestane but from what I read I may be swapping the bone aches for other side effects, sickness, hair loss etc.
I will take it for a few weeks and see how it goes.
Best wishes to all - take care.
Wendy
Hi ladies,
Was interested in your post because I too was taking Arimidex. Initially I suffered no side effects, but after about 4 months I began to have serious joint pain , which was so bad that I was scanned for bone mets. Thankfully I had none , and after a couple more months of the Arimidex with the pain worsening and me taking some really heavy duty pain relief, my onc changed me to Femara.
12 months on am pain free and have actually had no other side effects except slight stiffness when getting up which passes quite quickly and constant hunger!!!(weight gain is depressing but at least I’m not in pain anymore.)
I have been on Femara for almost a year. No problems, hardly notice hot flushes ankles are stiff when i get out of bed but after 2 mins back to normal. My head feels clearer and feel back to normal i suppose.
I am so glad that there is a thread about the pros and cons of these three drugs. Recently I have becoming more and more depressed. i was told it was the after effect of the cancer, my dads death etc. But instead of improving with time my mood got lower and lower. Eventually I rang my bcn and asked her if arimidex may have something to do with this. She wasn’t convinced but said that if it was that if I stopped it, I would notice the difference very quickly. She is to ring me next Tuesday. I am then getting an urgent appointment with oncology. I stopped arimidex 2 days ago and guess what - my mood is vastly better. i know that this does not change all of the problems in my life but i certainly feel better able to cope with them. My energy has returned, my work is better, I am out and about. Two days ago i could hardly get off the sofa or stop crying. Has anyone had this experience with arimidex or femera or aromasin. I had to do something or would have ended up going sick and in the psychiatric unit.
Rachy
You see heres my question, my onc is trying to get me to change from Tamoxifen to Arimidex or Aromasin saying that its better for women who are post menapausal, i dont suffer to much with side effects of Tamoxifen other than hot flushes and a bit of weight gain. After reading your comments on Arimidex im not sure what to do, do i change because its supposed to be better for me or stay with Tamoxifen because at the minute im not really having to many side effects, its a bloody nightmare ive got till july to decide, ive not really heard of the Aromasin. Any advice please ladies.
Take Care
Leslee x
Hi,
I have the same problem as i will change over later this year if the hormone tests give the right results. I am currently on Nolvadex - d after refusing to have the cheaper brands following posts that were quite daunting about the number of hot flushes people were having. Is it a coincidence that the most expensive brand, nolvadex has not given me one hot flush since December? Not sure but it works for me. I gather from BC friend our onc likes femara and it is the most expensive one they say. Another coincidence? I find the thought of changing tablets quite scarey too.]
Good luck everyone
Lily x
Hi,
In March my oncologist changed me from Tamoxifen to Arimidex, within two weeks I had developed an itchy rash on my feet spreading up my legs. I ended up in hospital thinking I had a major blood infection on a Sunday night with needles being prodded into my one good arm and feeling very scared. I was told to come off Arimidex as they thought that this was the cause.
I saw a dermatoligist two days later who confirmed that it was probably the Arimidex and confirmed that I had to come off it. My feet were in such a disgusting state that I went on to a serious infection which needed heavy duty antibiotics.
The A & E department wrote to the Oncologist and the Dermotologist wrote, I phoned the secretary who returning the call told me to go back onto Tamoxifen when I felt better.
This was all three months ago - my feet are still a mess. The Dermatologist has yellow carded Arimidex and feet have been photographed for teaching purposes in her department.
I have not seen the Oncologist since this happened.
Going back on Tamoxifen which I had tolerated quite well for two years, I am tired, depressed, putting on weight and feeling let down by the medical team who so far have been brilliant. Its as if my local hospital cant do joined up handwriting - nobody is talking to each other -
I think anyone thinking of changing should monitor themselves very carefully for six plus weeks and make sure that they can get to see an oncologist pdq if anything goes wrong - I would not wish what has happened to me on anyone.
hello everyone, My mood is still good as i have been off arimidex a week now. I have an appointment with the oncologist about arimidex and other AI’s on 16th July. From reading threads about the three AI’s certain side effects seem common(hot flushes,joint pain) but others seem to be quite individual( allergic reactions, very severe depression. It shows how very much the drugs effect us in different ways. I think it is thought that we should be grateful for the arimidex, tamoxifen,etc despite the side effects.It is definitely a question of degree how these side effects affect your life.It is good that ER+ bc have these drugs but it must vary a great deal how they affect overall prognosis. When I see my Oncologist I need to ask her this question about my own prognosis.
Rach xx
Hi Everyone
Just been reading thru various treatment posts and think this may be the best for advice. I have been on Arimadex for about 18mths no side effects at first apart from hot flushes I was already having as an after effect of HRT which I finished taking years ago. These have eased off now but over the past 6-8mths joint pains have kicked in - buttocks downwards - and this week I notice they are starting in my hands and wrists. I am worn out after the briefest shopping trip and cant walk very far without feeling like I’m dragging lead weights around. Next week is my checkup at hospital and I am thinking of asking for a change of tablets and as I am well past the menapause wonder if Tomaxifen(as had been suggested when I brought the subject up last time I saw the consultant) is a good idea or to ask if I can try Aromasin. Any body with simular problems on Arimadex and changed to Aromasin - was it a good move? Sorry to go on, had a really bad night last night and feel like stopping the tablets all together. XX
Hi All,
I am reading this in tears & realise i’m not going mad!I have been taking Arimidex for 8 months which was my decision as refused Tamoxifen due to the research i’d done on it in particular visual disturbance (had optic neuritis and had 6 weeks of not being able to see),increase risk of ovarian cancer & the dreaded weight gain.I felt “lucky” that at 45 the chemo had pushed me through the menopause so could take the alternative well…?
The aches & pains especially ankles,wrists and fingers,weight gain overwhelming tiredness have got worse over the past 4 months and now the depression so have decided that quality of life is important and have decided to come off it.Can’t tell you how it has helped to realise that i’m not the only one …thankyou
Hi all, will keep posting about how I get on without arimidex and how it goes at the oncologist on 16th July.I am sorry to hear you are feeling so down bling444.I know how debilatating the depression can be and quality of life is so so important.I felt better very quickly after I stopped arimidex so hope you do to.Get advice from your breast care nurse or oncologist though before stopping arimidex and be persistent if they fob you off. You know your mind and body better than anyone.
Rachy xx
Hi Rachy, Bling and Adizz
I posted earlier in June as I had changed to Aromasin. I can say that for me it was a great move all the extra pain I was experiencing has gone and since I had my knees injected they too have been a lot better. I saw my Onc last weeka and said I was feeling a lot better and wanted to stay on Aromasin, so she agreed.
Bling and Adizz do not suffer contact your Onc and get an appointment and discuss changing the meds, it is worth it.
Good Luck
Sarah x
Hi Sarah
THanks for your reply, unfortunately my appointment has been put back as my Consultant has been called away but I’m going to use the time to take Healthspan Chondromax and see if that helps, think I read in a post that it had done someone some good. I dont want to change to anything that might give eye problems as I have early maculardegeneration signs. - (I know now why they said 3 score years and ten as a lifespan - I hit it two years ago and thats when the problems started!) Having said that I feel very lucky that I reached that age with few problems as I know most on this site are a lot younger than me and I salute the way you cope with work and bringing up a family plus treatment, I really dont know how you do it. I wish you all well. Anne
I am glad to hear of the better tolerence to aromsin and femera. How do these drugs affect you mentally? I would be very interested to have some feedback on this.My main problem aside from the major depresssion is the enormous appetite and weight gain I had with arimidex. Do aromasin and femera affect appetite and weight like arimidex?
I would like to hear some feedback the same as Rachy about the aromasin & femara side effects compared to arimidex and weight gain,just seems so unfair after losing your confidence with the hair loss and loss of breasts that then you end up looking like a beached whale!!
Thanks girls x
yes. we may be still here but suffering
Hi All,
Just for info stopped taking Arimidex 5 weeks ago & after 2 weeks felt a new woman!Did the Race For Life 3 weeks ago & although only power walked it i felt great doing it.Depression has improved dramatically and aches and pains all but gone,hot sweats occasionaly and weight still not shifting but can’t have everything!Best decision for me to “take my chances” as not sure if % rate between taking & not taking it worth 5 years of misery.Hope this post helps.
All the best to you all
Karen x