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Anyone Got Anything Positive to Say about Arimedex?

35 REPLIES 35
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Re: Anyone Got Anything Positive to Say about Arimedex?

Hello. I've been on Aromasin for three and a half years. I had no side effects at first apart from horrendous hot flushes which I've had ever since coming off HRT. During the second year I started to have joint pains. They can be all over my body but seem to be in a different place every day - one day it's hands, then the next it's legs and so on. These pains have now lessened to some extent although I'm still very stiff first thing in the morning and when I get up from a sitting position. I've also had trigger thumb on both hands.

I had a bone density scan just before starting on Aromasin which was very good. I asked if it was necessary to take calcium while on Aromasin but was told there was no need. I had a second bone density scan last Autumn which showed a marked deterioration so I've been started on alendronic acid and have put myself on calcium.

My hair has always been thick and strong and came back very well after chemo. Recently, however, the condition has changed and it now feels very fine. It's thinning noticably and I've got the beginnings of male pattern baldness. Wonderful !

Good luck everyone ! Best wishes - Anthi

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Re: Anyone Got Anything Positive to Say about Arimedex?

Hi,
I've been on Arimidex since November 2010, as my Onc. found Secondaries on my ribs, I was on Tamoxifen for nearly 5 years.
I also have Renal Failure, I have also noticed since November,that my blood pressure have gone up, has anybody else noticed this?
regards
Janet46

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Re: Anyone Got Anything Positive to Say about Arimedex?

Hi all - your posts are extremely interesting please keep updating.

At the moment I'm experiencing continuing headaches never quite goes away ............ anyone getting these - dont want to complain to GP as seem to have a permanent booking there !! Just wondered if there was a link to Arimidex.

X LSD

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

I have just started taking Arimedex and AdCal (2 weeks ago). I felt a bit light headed for a couple of days but now that has gone. I have taken Glucosamine for about 4 years as a preventative for joint pain as I got older. Now 60. I had hot flushes anyway and so far they are no worse. Have found going to decaf coffee and tea has reduced hot flushes. Not sure if decaf tea so important. So far so good with the Arimedex and if it helps with BC that's the most important thing. Good luck to everyone who is finding SE a problem. I hope they reduce with time. Take care Chaffinch

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Re: Anyone Got Anything Positive to Say about Arimedex?

Couple of things that have helped me with joint pain are Vitamin D. 1,000 or 2,000 per day. Following a gluten free or low gluten diet. Gluten can cause inflammation in the joints and thus causes pain.

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Arimidex Side Effects
I've been on the awful drug for about 8 months now and during the first month I nearly gave them up as I decided my quality of life was so bad. I could barely get off my chair at work and then I'd stagger with stiffness and pain.

Somewhere on this site I found that people recommended Glucosamine + Chondroitin tablets.

They work for me, I take two a day and I feel as normal as before BC - except that last week I only took one tab a day 'cause I forgot to add one to my after dinner meds and supplements that I organise for the week so the aches started to come back. I tried to get them on prescription but my area doesn't do them.
Cheers

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Hi
10 months of Arimidex so far. Lots of hot flushes at first, but I was having those anyway. Have felt much worse since xmas. Aching all over and feel much more tired and 'old lady-ish'. So I wonder whether this is the Arimidex or the weather. I didn't think I was having too much trouble with it but now I'm not so sure. K x

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Well I've been on Arimidex for exactly 1 month and yesterday had a brief short sharp flush/flash and another today ...and so it begins. As I'm post 60 I doubt it men. so pretty certain it the meds.

Felt quite ill and disorientated for a short while but it was mercifuly brief ( sorry spelling is rubbish today) lets hope thats all I 've got to contend with.

Highlighted
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Re: Anyone Got Anything Positive to Say about Arimedex?

Took my problem about Arimidex to my G.P. she said that lots of ladies had a problem with Femara but didn't have so many s/e with Arimidex or vice versa and the only way to find out was to take them, so get on with it. That really didn't help me much. The nurse who comes in to dress the rad. burns said to see another Dr. in the practice as she could see how disturbed and emotional I was over this issue - the cure seeming worse than the disease.
Initially the wound was infected and burst open which was worrying. Then developing burns from radiation treatment despite creaming umpteen times per day to try to prevent it, while trying to recover from a drug, Femara, which turned me into a gibbering idiot/invalid.
Anyway I went to see him today and he couldn't have been nicer or more helpful which was great. Basically he said if he had the same experience and options as I have had there is no way he could sign up to five years or maybe less of agony. So he will ask a friendly psychologist to see me about the emotional overload and he will try to get some answers to my questions. I have to relax and try to stop worrying excessively and see him again in two weeks.
I feel so much better already.

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Hi again Annie
It is definitely not all in your mind and I am so glad that us being in touch is helping....it is helping me too; it is a lonely place if you think you are the only one.
You are right in that some research has shown that the side effects do mean that the drug is working. My consultant at the hospital said that the eide effects should eventually get better, so we can both cling to that hope. Regarding the calcium supplement Adcal-D3, my consultant recommended it as a preventative measure against bone thinning. Prevention is better that cure! My GP prescribes it for me so you could ask yours; I am sure you are entitled to have it. Keep up the good fight!
Bye for now, Jenny

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

hi winchester babe.

how do i go about adcal is it doctor or onc, i seems as though not a lot of ladies are on aromasin maybe because it is the latest in the AI s. its good to hear your flushes are better, again like the joints and stiffness some days they are better than others could it be our bodies build up to a point and then it evens off and gets better? all the reviews say how good it it and also how well tolerated it is, so it does help when someone is having the same experiences ,as i was begining to think its all in my mind.

hugs Annie

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Hi Annie
Yes, lets keep in touch about Aromasin. I can say that my night sweats have stopped over the last 3-4 nights, so, fingers crossed that I am over that now. I also had a bone density scan and it was fine. My GP recommends that I take one Adcal-D3 a day to keep my bones healthy - this is relly worth doing as studies have shown that high doses of calcium make a difference. Hople this helps!

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

hi winchester babe,

i feel just the same as you, i have been on Aromasin since last march, 10 months now, the first few weeks were fine and thought i was going to do well, then bang, i dont think i have a part of my body that dosent hurt and some days are worse than others, i also get so tired and i think that people ( ie my manager ) thinks i am making it up as i have asked for my hours to be reviewed. i will stick with it though because of good reviews and also have read that strangly the more side effects the less likely for a recurrance ( not sure how true that is though ) would love to keep in touch as we are only a couple of months differnet on aromasin please let me know how you progress. i dont take anything else my dexa scan was ok. sorry if this does not help
hugs to all
Annie

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Re: Anyone Got Anything Positive to Say about Arimedex?

Acupuncture is great for hot flushes whether due to menopause or breast cancer.I've had great results with it.

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Re: Anyone Got Anything Positive to Say about Arimedex?

I guess I'm lucky that the only side effects I can attribute to Arimidex are hot flushes/ night sweats- and my very thin hair/poor re-growth after chemo. All this is horrible and the sweats disturb my sleep and I hate them - but I have to believe that the alternative might be a lot worse.

I have some joint problems but had arthitic pain before BC and although I do have occasional trigger finger, I also know many people with the same occasional symptom, who are not on Arimidex.

How do we know that all our various aches and pins are due to particular drug - especially if we are "older women" and bits of us are are starting to wear out anyway - or we have other conditions in addition to BC?

Does anyone have experience of Acupuncture for hot flushes? I recently spoke to someone who had had very good results after going for this- she had bad night sweats during the menopause- she didn't have BC .

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

Hi everyone,

I am in Germany and don't post very often. I am 63 now, OP 3 years ago. I started with Tamoxifen and I wrongly thought all the fluid retention and breathlessness I had was a side-effect - it must have been an after-effect of chemo, because it suddenly disappeared after a year. I hated it because I couldn't walk more than 20 minutes without getting breathless. So I changed to Arimidex.

With both, I got hot flushes, quite a lot but probably not as bad as some people. I also had hair loss - but it began to improve after a while - and a downy face, but that also seemed to improve. But after six months on Arimidex, I began to get trigger fingers/thumbs, which apparently 5% of people on these drugs get (2% in the population as a whole). It began to hurt, at the base of my thumbs. Eventually I couldn't use scissors without extreme pain. I also had the beginnings of carpal tunnel syndrome, and as I type for a living I wasn't happy - although I went to a doctor who gave me a cortisone injection and explained the operations to me, so I think it might have been OK. But then again, I was worried about lymph problems if I had an OP on my right hand. (My gynecologist said it doesn't come from Arimidex and is normal at my age, so no help there).

I then went back on Tamoxifen, last July, and gradually the problems in my hands went away.

These problems are swollen tendons, or swollen tendon sheaths. They aren't bone pain. I know people get bone pain, but I didn't. But I did begin to get this stiffness in my ankles that is related to tendon swelling.

If I have to stop Tamoxifen for medical reasons, I will be trying Femara or Aromasin, and I suppose I may have the hand problems again and may have to have an operation. But I understand everyone who says they would rather stop the drugs, because some side effects are really bad.

Margaret

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

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.

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Re: Anyone Got Anything Positive to Say about Arimedex?

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.

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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?

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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.

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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

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Re: Anyone Got Anything Positive to Say about Arimedex?

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 ......!

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Re: Anyone Got Anything Positive to Say about Arimedex?

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!

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

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

Member

Re: Anyone Got Anything Positive to Say about Arimedex?

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.

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Anyone Got Anything Positive to Say about Arimedex?

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