Hi all - Haven’t been on the site for ages - but i have always been given good help and advice in the past!
Briefly -I had high grade DCIS - lymph nodes clear - mastectomy and immediate recon and reduction on other side in May - was then told had a small aggressive grade three tumour in the removed breast - had chemo - finished in October and was so looking back to normality - all went so well and took it in my stride …but that was B.A.! Before Arimidex…feel Iam 100 instead of 60 -can hardly lift anything - constantly aching joints - weeded yesterday for half an hour with a wee trowel and then could barely move my wrists - can’t get up without help when I kneel or crouch because of knee pain - dryness awful -lost libido - and feel low and weepy …and I can’t do it - it’s only been four months - tried glucosamine+ MSM +chondritin - and replens -walk and swim regularly - so have just phoned my oncologist. He was very sympathetic when I said I couldn’t go on with Arimidex. He suggested Tamoxifen as said joint problems are not a side effect but I feel I might be out of the frying pan into the proverbial - has suggested I stop Arimidex for a couple of weeks and see how it goes and then decide.
Anybody else stopped taking it? And any advice from anyone - please?
Sorry - I feel bad going on about myself on this site when there are those far worse than me!
xxxxxx
I am sorry you are suffering with Arimidex - you are not alone. Apart from the usual menopausal symptoms I am not suffering too much but I know some women have been through hell with it. Have a look at Ask A Patient
askapatient.com/viewrating.asp?drug=20541&name=ARIMIDEX
If you don’t want to try Tamoxifen, how about Aromasin? It’s another AI but it works in a different way. They usually give Aromasin after a couple of years on Tamoxifen I believe.
I have heard that SEs can come and go and change the longer you stay on Arimidex. Maybe if you tough it out a bit longer things will begin to improve?
I wish you luck.
Hi Chebsey
Interesting reading your post. I am currently on tamoxifen, have been since July 2006. No problems really except for weight gain and flushes. However i have had a recent blood test to judge hormone levels and whether i am post meno, in which case i could change to arimidex. I know so may ladies who have had probs with it though and one who could hardly get up in the mornings. Then others are ok. Personally i am going to stick with tamoxifen, although the current trials they have done show a better survival rate if you change from tamoxifen to arimidex after 2-3 yrs.
My quaility of life is more important.Do change if your in such discomfort. Your oncologist sounds good so be guided by them. I do hope you find some form of medication which keeps this cancer at bay but also gives you a good quality of life.
Rx
Hi There, You sound exactly how I feel!! in fact I came on here hoping to find someone who could tell what it was like to give up Arimidex.
I was dx in `Sept 07. had lumpectomy followed by mastectomy followed by nipple removal!!! On arimidex sice first meeting consultant- no adverse effects-- then had chemo in April 08 Re-started Arimidex and boy do I have pain1 I’m having an operation on my shulder next friday. tendon torn. I have a pain in one knee and can hardly walk at times 5n the other leg my shin feels as though its going to burst into flames and my foot really hurts. I really am at my wits end.ortho consultant ambivalent to Arimidex side effects which I think is ignorance but how can one get these consultants to share information. At this moment I am on the edge of throwing tablets out. we must wait and see. Thank heaven for this forum… Its so good to be able to let off steam and know someone will understand. Thanks, Coleen
Yes, why dont you ask for femara or one of the other AI’s -when i was taken off Tamoxifen and started on Femrara she said if i get really bad pains in arms, writsts, fingers etc she said we will try a different drug. Dont give up just after one -its worth trying all your options. I have been fine on Femara but if i put pressure on my arm or wrists and leave it for a few mins its painfeul to move but after a min its fine. I have lost the fuzzy head i got with tamoxifen and feel really well. I asked my onc if i should take glucosamine and he said i could but doughts that it would make any diffence as it wouldnt be strong enough but when i realised it contained shell fish i couldnt anyway. I take very strong fish oil caps.
As for the dryness etc i found it impossible to have sex it was so painful. Hubby examined me 
and sid the skin looked like tissue paper (sorry TMI) so its was thined skin not dryness that was causing the pain. i had treid replens and others but didnt make any difference. I told my onc and she put me on these pesseries that contain tiny amounts of hormones to thicken the skin up. She said its perfectly safe to give them to me even though i was prog ++ and within a month the problem had gone.
Hi - thanks for all the replies - really helpful. Going to se consultant tomor to get dressings off after new nipple op fortnight ago-Be good to talk to him and see what he thinks of wimpwoman that I am! my aches have improved a bit already since last dose of Arimidex on Fri- have to get in touch with oncologist after a fortnight to discuss it- thanks again and love to all - these forums save my sanity x
PS _ aquick but humble edit/ addition -Just caught up with DebsinCornwall’s posts-I’m from Cornwall too and read them - she’s been so supportive to me when I was a newbie -and to lots of others and I read what she is going through as are many - send love and hugs - and I’m going to stop my pathetic little grumbles and be grateful!