Hi there - can I ask if anyone has been free of side effects of Arimedex. I want to focus on the positive - finding it too depressing reading post were all you lovely ladies are suffering S/E from this ‘bloomin’ stuff. Started in January 2011 so am in to counting days so far… pretty decrepit anyway so any aches and pains are already there!! just dont wan to make them worse. Thanks Lazydaisy
Hi Lazydaisy, don’t want to sound like Pollyanna but I have had minimal side effects with Arimidrex.
I started it at begining of September 2010 at first had quite bad joint pain and at night pains in my legs, I also had some hot flushes usually at night but some during the day. I take my tablet in the morning and to be honest the problems have reduced significantly. i am still a bit stiff in the morning when I get out of bed and if I sit in one postion in a chair for too long I am stiff when i get out of it - but other than that am ok. No hot flushes really even at night. Its almost as if my body has adjusted itself. Stick with it and fingers crossed it should get better.
Hi Lazydaisy
I’m on tamoxifen but my friend has been on arimidex since finishing chemo at the begining of november, she was on a trial too and took it 2 weeks before and 2 weeks after her mx and she has had no side effects at all so there are lucky people out there
Tracey xx
Hi,
In spite of me having truly horrible side effects from arimidex, I prefer to take it as long as it works and that appears to be the case at the mo.Better that than the alternative! My Mum had it for 7 years and has been swopped to a different one recently but those side effects are worse than the ones on arimidex!
I definitely think my hot flushes are reducing after 2 years on Arimidex
Also -having had very poor hair re-growth after chemotherapy and the onc saying that Arimidex was part of the problem …after 2 years the hair really does seem to be making SOME progress…so not everything is negative re Arimidex.
I have arthritis in several joints but this has NOT worsened since I started the drug.- small mercies …!
Yes, a really big positive…if it keeps cancer at bay it is a blessing.
I too am on an aromatase inhibitor (femara). I have had a rough time with it, have hated it and resented it.
That and the zoladex, make me old before my time, make me tired,fat, confused, tearful and depressed. My bones ache, I have arthritis and creak like a woman of 80…
but…
I am alive (despite secondaries). It had helped keep things slowed down for two years. My Mum who died aged 30, would have loved a treatment and a chance.
It is hard, glucosamine helps, but in the scheme of things AI’s are miracles in tablet form.
Julie x
Although I am not longer taking Arimidex ( did for years though) I totally agree with what Julie has written. I then progressed to Aromasin and am now on Femara. I have been on these various drugs for 12 years in total…I too have bone mets…and they have kept me here too…all good as far as I am concerned. Hope they do the trick for you too. Val X
I’ve been on Arimidex just over 2 months, and have had only minimal side effects, namely a slight flush in the evenings, (but not at night) and what little joint pain I got stopped after 1 - 2 weeks, so I’m not complaining. I’ve had some abdo discomfort, but I think that is down to the thyroid medication I was started on at the same time! As others have said if it is working it’s worth it.
Heather.xx
Hi may I join in? Have been on Arimidex since beg last July Onc told me s/e joint aching and worse hot flushes. So far joints OK and hot flushes were shorter and sharper and did wake me up at night, now seem to be calming down. But am constantly nauseous from rumbling away in the back ground to much much worse.But am ER 8/8 and Pr 8/8 so need this and s/emore than tolerable given what some ladies are having to endure Jackie
Hi,
Been on Arimidex and Zoladex since mid Sept, can’t really tell which one is causing the se, maybe both!
No joint pains, but slight hot flushes. I take mine in the evening just before I go to bed. I find that when I’m doing things slowly, it’s fine, but when I rush around the house and doing physical work (shopping, cleaning, cooking, etc…) I get really bad.
Scans coming up at the end of the month (if my onc remembers to book it!), I’ll know whether it’s working. If it works, then I’d rather be having those than chemo!
xx
Thanks so much for replying - nice to see so many familiar names still contributing.
I’m doing o.k at the moment but when I was on Tamox. I did develop multiple pulmonary embolisms in both lungs this has left me with a bit of a dodgey heart ( although the hospital put it all down to a day surgery knee op ) even though I’d had several months of phlebitis before that but I was taken off Tamox. immediately. When I was on Tamox. I did begin to develop a light down on my jaw line and cheek area … yes I know in the circumstances that is simply too vain for words but it began to really matter … it’s as though I really was beginning to lose ‘me’. So has anyone developed that S.E.?
We are between a rock and a hard place - we need to take it so that if ‘it’ does come back at least we can say we did everything in our power to prevent it but if we are brave ( or stupid) depending on where we stand on that one, then we are rejecting the ‘magic potion’ and trusting to ‘luck’. There must be some out there who have decided to ‘go it alone’ and are surviving ( bet it’s a bl…dy cold place to be!)
I suppose I’m abit hacked off because I’d been doing so well since the clotting issues were sorted out ( on a fistful of meds for heart but doing really well) ONC says that if I get short of breath I’m to come off immediately and he wont prescribe anything else … sorry girls am rambling in no particular direction.
Having re-read this I come over as a selfish, vain , self obsessed old biddy honest girls I’m trying not to be just want to be ‘well informed’. Going to bed to annoy husband that usually takes my mind off things !! night night.Sx
Lazydaisy no you are not coming across as a selfish vain self obsessed old biddy!! The SE for Arimidrex are well documented and are very real - on top of that they do affect us all differently and you are clearly getting more than your fair share. This site is for us to share our experiences and let of steam - and if you want to have a rant on here do so! Like you say it is a very lonely place to be in and to have to make a decision put up with debilitating SE or stop taking is a major decison for anyone - The hot night flushes or a few aches and pains are one thing but all the stuff you have is no joke and it must be very difficult to live with.
Take care xxxxx
Hi. Wow wish i hadn’t read some bits of this thread… Diagnosed with a reoccurance in Dec. Surgery last week. Coming off Tamoxifen cos its not worked. Having the monthly injections and arim. Am 38. hope it works. I remember reading up about Tamoxifen two yrs ago before i started taking it… And frightened myself silly. I have been ok on Tamoxifen. Am wondering if the New treatment ill be starting Will be v different with the s/e… Any advice greatly recieved. Thank you
Heidi. Xxx
Hello - sorry this response is a bit late. I have been on Arimidex for five years in a few weeks. I am dreading coming off it, and want to talk to my gp about prolonging it. I have had no side effects, I feel great - well, normal, not great! I know everyone is different, but I would say don’t worry, take it, it’s a wonderful thing! Good luck.
Hello everyone, I’m new to this site so here goes … since finishing two lots of surgery (lump and left side lymph nodes), 6 chemos (FEC75) and radio which finished last April 2010, I have had a strange time taking all this adjuvant hormone therapy. Tamoxifen made me suicidally depressed and the Venlaflaxin made me into a zombie so I was taken off both for a month, what a revelation!! I felt human and knew it certainly was the drugs that had caused these symptoms. I was then started on Femara (Letrozole) which gave me such awful joint pain after 4 months I couldn’t even do the washing up, so I stopped taking those! I am now taking Arimidex and have been taking these for 2-3 months and the joint pain in my hands yesterday was so bad that I had to ask an assistant at Sainsbury’s to help me get my shopping through the checkout which was awful. Has anyone else had suck severe symptoms. Breast nurse last week said that if I can get through 3 months then the pain might subside, can anyone give me hope that this will happen, I obviously need to take them. I am also out of work, penniless, on benefits and am worried about applying for work with this going on? Help please Jen x
I am sitting looking at a packet of Arimidex and don’t know what to do. I took Femara for about 10 days and turned into a really old woman with aches in every joint, couldn’t get out of a chair or my bed without an enormous struggle. I was walking/struggling to go downstairs one foot down then the other to the same step. Unable to sleep at night, breathless, with awful itchy patches at elbows, armpits and behind my knees. Life was not worth living.
Stopped taking them 16th Dec. and a few antihistamines chased the itchy patches but am only this week starting to walk and rise a bit easier. Now the oncologist has recommended Arimidex but indicates that the side effects are similar to Femara. The thought of more pain really upsets me as I finished Radiotherapy today and have several raw patches to attend to regularly - they will heal but I don’t think I could cope with 5 years of torture. Does anyone have an alternative which could help?
Personally I think that Arimidex and Femara are wonderful drugs. It may just be that your body needs a wee while to get used to them and that the side effects will improve after a few weeks. Give them a chance nan2high as if they keep your cancer under control they will be worth it in the end. I have been taking these types of drugs for 12 years now…and I am just glad to be around…give your Arimidex a try…Hugs Val
I was on Arimidex for three and a half years and found much the same to begin with - but after the first few mnnths the side effects wore off and I was hardly aware of them… Hope the same is true for you. Just about to start Aromasin - fingers crossed its as effective and as easy to live with.
Hi everyone
Manon, you kindly shared that your side effects from Arimadex wore off over 9 months and now you are starting Aromasin? I am experiencing very bad side effects from Aromasin e.g. painfull and stiff fingers, night sweats, general fatigue. I have been on it for 7 months. I am wondering if anyone can give me hope that these effects will lessen in time?
I also wanted to share with anyone who is taking levothyroxine (common thing for among women over 50 to have under active thyroid) about not taking high doses of calcium at the same time. I did not know this until I read reports on internet. Reports say that the calcium will block the levothyroxine and they should be taken at at the same time; at least 2-6 hours apart. My GP agrees with this. As high does of calcium are needed if you are taking any aromatase inhibitors, there must be other women like me who need to know this. Hope this helps and would be grateful for any reports of side effects of Aromasin lessening after time.
Thank you Val for hugs and kind thoughts and to other responders for their contributions. Been to see local doctor about Arimadex she says it may not have the same SE’s as Femara but we won’t know until I try.
I never thought I was a woose but constant pain is not for me. I don’t know how you brave ladies cope. I’m so depressed