ok, that’s where I am…1 week in on arimidex, i have lower back pain and woke up yesterday with period-like pains, which have continued today, plus a feeling of nausea, I have called my bnc, who is looking into what might be causing it, she did say to take some paracetamol/ibuprofen in the meantime and that does seem to be easing it at last.Also, went for a short walk, which may have helped too.As this is supposed to be the ‘gold standard drug’ i don’t want to come off it!
Hi Sizan / Narnia
Thanks for responding. So sorry you are feeling the same as me but at least now I know it is ‘normal’! Gold Standard is all that is keeping me going, otherwise I would be looking for something else although from some of the threads they all come with side effects so perhaps, better the devil you know!
Got out of work earlier to thick flakes of snow falling, longed for a flush but they never come when you want them so froze all the way home. As soon as I got indoors, into the warm, along came the flush - typical.
Take care all.
Dear all - STOP PRESS !!! have been taking glucosamine plus chondroitin plus MSM (all in the one pill) and my joint pains have gone Yes really!! Its worth a try.
Love Zoe
p.s not seen Onc yet about armpit. Forgetting all about it till next week. If somethings there I’m not going to waste nervous energy worrying about it .x
Hi Zoe,
I totally agree about the glucosamine plus chondroitin, i take 2 500mg a day with a calcium tablet and i am sure it helps with the old painful bones syndrome from the Arimidex. Just packed a load to take with me to costa del sol on Friday, i plan to do a lot of walking.
Very sensible about putting worries on the back burner, we can drive ourselves mad over it, natural of course, i have had real pain under my right arm but i saw the breast nurse last week and she could not feel any lumps, could be my using the right arm for everything now.
Keep us posted on how you get on
Suzzanne
My god I think I am lucky. I have been taking Arimidex for nearly a year now with nothing but the odd twinge! I feel for you all. For clarity I am 56 and had chemo, radio - well, you know the whole lot really! Approached my first white tablet with a lot of trepidation last November - but , no problem! Hope there are others like me out there. But so feel for everyone here.
Love
Dilys
xxxx
Hi all
very interesting to read all the arimidex comments. I have been on arimidex for 2 years. My main problems with it are reduced bone density - luckily I had a really good count initially, but now its down to the low side of normal and also during the past six months, considerable hair thinning, estimate hair thickness is now down by 40%. Joint stiffness manageable, dryness not good - using replens. Oh yes, sleeping or lack of …
When I next see the oncologist I want to ask about any studies regarding long term effect of arimidex. Does anyone have any information or is it all too new? Most people on this site seem to have been on it for 2.5 years or less. Has anyone been on it for a longer period of time?
Haven’t been on the site since I finished treatment. I recognised a few names from treatment days, Suzanne and Aroma.
love Sunshine
Hi Sunshine
I met a lady on holiday last year who had been on Arimidex for 5 years and was about to come off. She had no real problems with it apart from some pain in her feet. That’s one person who has done the 5 years, and by the way she looked fantastic!
Suzzanne
thanks Suzzane, thats really good to know.
Sunshine
Thanks Suzzanne, the pain is still there and I have been worrrying on and off…but no worse. Re the question from Sunshine about long-term effects, well we are all in a way ‘guinea-pigs’ because it is so new, but it works well,and at least we willbe making it better for the ladies coming after us…love Zoe x
Hi Ladies
First time on here for me tonight. Was on Tamoxifen for 4 months felt absolutly dreadful onc said have a 2 month break which helped me get back to some normal life. I have recently started Arimidex had alot of aches and pains also get very tired and emotions are all over the place, have some really low days, i’m sure i’m not on my own there (even though it feels like it sometimmes).
Glad my bcn told me about this site.
Jo x
Hi everyone,
Prescribed Arimidex for 5 years, read loads of reviews, spoke to many ladies who were on or had been on it and refused it for all the reasons given above and so glad I did. For me the benefits of taking it were so small and the side effects so big it didnt seem worth being in constant pain for 5 years or having a lower quality of life - gold standard or not - if it comes back so be it, but at least in the meantime I can live pain free. Oncologist respected my views.
Clarabelle x
Hi
Yes i can fully understand where your coming from, i’m thinking along the same lines. As i have felt that low lately. So i need to speak to onc see what he says, but tend to get conflicting advice from onc and surgeon so a little confused myself…
Jo x
Hi all,
Have just come off Arimidex after being on it for 10 months and feel as tho’ a huge weight has been lifted! Was originally taking Megace 40mg along with the Arimidex but the drug company withdrew it mid-July and I really struggled with side effects after that. Ended up taking about half a dozen drugs none of which seemed to do any good and all gave me additional side effects. Saw Onc last Wed and she did some calculations. Seems that my 10yr survival rate would be 82o/o with just the op and rads that I’ve had and 83.4o/o when you add in the drug and for me it’s just not worth it — life was hell on the drug, I’m hoping it will improve dramatically now!
Best wishes to all of you.
Jacquie xx
Hi All
My BC was 100% ER+ so put on Arimidex for 5 years in July. No bad side effects so far - (57 so post-menapausal but didn’t have bad PM symptoms anyway before) just a bit stiff some times and vision a bit worse. Still sleeping and eating OK as before - just hoping it continues OK - tho just read a BBC article which says the people with the most side effects seem to get the most benefit from the drug?? Can’t win can you?? Does my lack of side effects mean it is less effective I wonder??
Jo xx
I think someone just wrote that to stop us all moaning about the side effects!!!
Hi BessieBoo
I think you could be right!! Reading all the side effects on the pamphlet with Arimidex - I don’t like the sound of the long term damage it can do - it is so hard to know what the best choice is!! I think if I do start getting bad side effects I will stop taking it too - tho I might not tell my hubby as he sees it as a security blanket.
Jo xx
Glad to read all your different views. I was defo about tostop taking arimidex until 2 weeks ago (when pain in armpit started) but then the glucosamine plus chondroitin and MSM completely relieved the joint problems. Will wait until after I’ve seen onc a week Thursday to decide how important arimidex is. But really feel the same as Clarabelle and Jo. Its hard to keep taking stuff that makes you feel so bad, especially the thought of 5 years…
love Zoe x
Hi All
I have been on Arimidex for 3.5 months now. I started having more hot flushes within a couple of weeks (was getting them following hysterectomy/oophorectomy just prior to bc dx). I can live with them in the day but I have found them difficult at night, not because of excessive sweating but just because they play havoc with my sleep and I sometimes wake up feeling more tired than when I went to bed. Occasionally I take a herbal supplement with valerian which does help, and valerian tea before bed helps too.
After about six weeks I started getting joint pain - in my lower back, hips, knees and feet (I thought this was odd but apparently it is quite common). At first I just felt stiff if I had been sitting for a while and painful if I had been for a long walk (the bit in the middle was ok) but over the last few weeks it has got a lot worse - and having the ‘time warp’ - (love that expression!) in the morning - hobbling quite badly - and barely able to get socks, pants and shoes on. I am 50 and felt about 90. I was quite down about it even though my onc said that there was a good chance of it improving in another three months. Note the past tense?? Yes, thanks to knowles (a lifesaver) and this forum I tried some glucosamine and chondroitin - started on Sunday and already feeling almost back to normal. No pain when I got up this morning and I can bend down and pick something up from the floor!! Fingers crossed it stays like this. I’ll keep you posted. Looby xx
hi yes the pains from arimadex drive me mad as well ive been on it since 2007 and have dreadful days when every move is painful ,im taking ibuprofin and they only mask the pain usually i just get on with it as best i can ,does anyone else find they are extra cold with it?and sleepless at night so in the day im a wreck .would so love to return to work but as i have lymphodemia as well this isnt possible ,but the side effects are worth it to me if it keeps the b…s away ,seems to be working on my liver secs too .hi suzzanne,nice to see you posting again ,how are you doing .lynn x
Hi yes the pains drive me mad as well I also have sleepless nights I was up at 2.30am today I never have a full night and like you a wreck by day.I get very cold especially in my feet which is very odd for me as I used to get too hot it was always a joke to see me in summer clothes in winter.
Some days the pain is so bad I can hardly move then another day it is better my arms are the worst cant even lift a kettle at times this really gets me down and the thought of another 4 and a half years like this makes me wonder if I can do it.
I am 52 so I dont suffer with flushes,but my brain is not so alert is this the drug or my age !!!
Still need to keep going suppose it is doing me good
Any one else totally fed up feeling like this??
jackie xx