Lets work together re Arimidex side effects

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1

Hi All

There seems to be a lot of questions and worries about Arimidex on here recently. Could we all try to pool our experiences, information and knowledge together somehow. I have been doing a bit of research about this medication and I have found that the most common side effect is painful muscles and joints, sore bones etc. Some ladies only have problems with their elbows, others its the knees, some have two or three particular areas of discomfort and pain. Other symptoms are queasiness, nausea, upset tummy, feeling strange, dizziness. Menopause symptoms appear to be worse when taking Arimidex.

What I am trying to say is if we can all put our answers, remedies, thoughts together perhaps we could help one another to lessen these side effects by telling what works and what doesn’t.

What do you think ladies?

Love Jan

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I have been on Arimidex for nearly 4 months now and after initially getting some generalised aches and pains these have now gone but I am still getting hot flushes. I keep an Arimidex diary and they seem to be levelling out at 8 a day which I can tolerate. I am 68 and my oestrogen status was low to moderate. 17 years ago when I first had BC I was on Tamoxifen and had to stop after 3 years due to almost permanent hot flushes. I do find exercise helps - I go to 3 yoga classes a week, lift weights and work out a lot in the gym. This is good for our bones as Arimidex can weaken them. I also see hair can get thin and really hope this doesn’t happen to me. I find the busier I am the less I notice the flushes. Will be interesting to see what others have to say.

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I have been on Arimidex for 7 months having changed from tamoxifen after 8 months because I was HER2+. No problems at all with tamoxifen and no real aches and pains with arimidex, apart from occasional pain and stiffness in the hand and fingers. But I did develop quite bad depression (supposed to be more likely with tamoxifen!) My oncologist said that it was very likely to be the result of the arimidex and to take antidepressants.
They took a long time to work ( 10 weeks) and I needed double the initial dose but with their help I’m feeling really good. The other side effect I get is real tiredness at the end of the day. I would prefer not to be taking antidepressants (40mg citalopram) but feel so much better that I havent got any real hang ups about it. I am postmenapausal and neither tamoxifen or arimidex brought on hot flushes. I agree with olivia about exercise - the only way I could find some relief from the depression was to go on long walks.

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I was so pleased to see this category included - I have been taking arimidex since January (I think) this year. Memory just awful - and for some funny reason facial recognition has gone out the window - unless I work with someone constantly - I do not have a prayer of recognising them in the street!! My eyesight has also got worse during the past year (my optician funnily enough is also beng treated for cancer and she thinks it is the medication/disease) Possible that this is just age? although I am only just 50…? Hopefully nothing more sinister.

I also have some muscular and joint discomfort and go to the gym 3 - 4 times a week as this does help. Can’t shift any weight. I had not thought that the wine wud have much effect - but see the symptoms described by others in these threads and think now I will be more comfortable if I don’t bother for the next 4 odd years. How sad is that?

I don’t seem to have any remedies - and some days are better than others - so I will be watching this post, looking out for useful advice.

thanks for sharing!!
x

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I’ve been taking Arimidex for nearly two years. I’m 51 and post meno since chemo. Loads of hot flushes and really awful night sweats with Tamoxifen, not quite so bad and in a somehow more bearable way on Arimidex. Quite a lot of joint pain especially shoulders and hands. Really bad cronic lower back pain which I had suffered on and off for years but now almost all the time. (had a bone scan recently to check it out) Exercise definately helps.
I get really tired in an annoyingly pathetic way! Used to be able to work really physically for hours on end but now get knackered more quickly. Maybe just age getting the better of me!

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oh how i can relate to all the symptoms .i get really awful joint pains, hot flashes(something i didnt have even with the menapause!)3 or 4 a day! dosnt sound as bad as some people have had but still gets me down.as for memory loss,i find i keep forgetting things ive already said and have a habit of repeating myself a lot. i agree we could do with more advice as to the side effects of this drug, we have to take so many during treatments i think we tend not to question anymore. look forward to relpys on this matter. to all fellow sufferers chin up!! lynn xx

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I think I must be really lucky after reading the other comments here. I did have bad joint pains in my hips at first (I’ve been on Arimidex for 4 months so perhaps it’s early days!), but I found that going for a good walk helped. I am very stiff in the mornings still, walk around like Quasimodo for an hour or so until it wears off. I am 68 so came through the menopause 15 years ago which is probably why I don’t get the hot flushes, just occasional warm ones. Having read about the side effects of Tamoxifen I’d far rather put up with those with Arimidex. I was interested to see Tosyn says she was changed onto Arimidex because she is Her2 - why was that? I’m oestrogen receptive + her2 receptive but was given no advice on which medication to go on, it was left up to me.

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I was in Arimidex for just over a year. I had stiff joints - mainly knees. I also had phases when I had shortness of breath and an increase in my existing allergic reaction to dogs (wheezing). I rushed off to my GP about this, only to find out later that shortness of breath seems to be a fairly common side effect of Arimidex.

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Hi Valanne,
this is a grey area and the research so far is suggestive but not conclusive that tamoxifen may react in a negative or undesirable way on some HER2+ cancers (google tamoxifen Dr Jekyll & Mr Hyde) Some oncologists accept this and some do not. I had to bring up the topic myself and found that of the two oncologists I saw (from the same treatment team!) they had opposing views which was difficult for a mere patient but I was more convinced by the arimidex recommendation.
Regards
Ros

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Been on Arimidex for just over 2 years now. Had to stop Tamoxifen after 2 years -, when I was first diagnosed, as I had severe side efects (icl. permanent damage to my eyesite). I get joint pains, mainly in my knees, elbows and hands and dreadful nightsweats, although they are not nearly as bad as when taking Tamoxifen. I’ve also developed quite a lot of allergies and take a lot of antihistamines and steroids to combat this. But for me, the worst side effect is extreme tiredness, and I mean extreme!! I get so tired, I am unable to think or even speak and by 4pm my day is basically over. If I ever want to go out at night, I need to sleep for most of the afternoon, otherwise I’ll be no use to anyone - least my husband. But as I only sleep 4 hours a night (on a good night) due to nightsweats, it follows that I am always tired. I find that exercise helps, I swim 3 times a week and walk and I try to avoid alcohol and sweet treats as that makes the sweats worse. It’s a question of having a good meal out or not sleeping!!!

Sorry if all this sounds so horrific, but it seems the price we all have to pay for a (hopefully) cancer free future.

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I have been on Arimadex since January. Initially I didn’t notice any side effects. Over the last few months I have developed very painful thumbs. GP says it is trigger finger(thumb) and not connected to meds, but I am not so sure. Today, for the first time apart from immediately post op, I have been feeling dizzy and sick when I stand up. How do any of us know which symtoms are caused by Arimadex? I have hot sweats as well, but I still think it is worth the peace of mind to continue taking it.

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I think it is really difficult to differentiate between side effects of arimidex (or similar)and menopausal symptoms especially when there is so much interaction between the two. I have been told when a menopause is forced early due to surgery or medication the symptoms are 10 times worse. Dont stand a chance really for 5 years do we? I was fine on Zoladex, never really had a problem, a few hot flushes, a little dizziness now and then but nothing too bad, Tamoxifen was a whole different kettle of fish - never felt so ill in all my life. Like Heidicat, feel a little more peace of mind continuing with the medication - suppose it is a feeling of protection.

Love K

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I have been on Arimidex since January 07. The hot flashes were worse than when I was going through the menopause. I have been prescribed Megestrol Acetate and haven’t had any hot flashes since. Regarding the joint pain, I have suffered with my left hip, knees and fingers. I already had arthritis in my hip prior to Arimidex so I am not blaming the Arimidex for my hip pain. I have been taking Cod Liver Oil capsules and this has help enormously with the joints in my fingers and knees. You need to take the capsules for a couple of months before you feel a difference. I also take evening primrose oil and fish oil capsules. Because Arimidex can bring on osteoporosis my doctor advised that exercise was a must, especially walking and cycling to help prevent osteoporosis. For me, I will suffer the pain and continue with the Arimidex as I believe it really will reduce the chances of the cancer coming back and or spreading.

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I am coming up to two years on Arimidex. I got very bad aches for the first four months. It got really bad when I walked for a long time, e.g. going into town. The pain got worse when I tried to go upstairs. It gradually eased over the next two months.

Heidicat,
I also developed trigger finger in my left hand. My oncologist said Arimidex is known to affect the hands.

I had a few problems with my eyes while on Tamoxifen. Since I have started Arimidex, my eyes have given me no bother.

The hot flushes continue, but not as intense as earlier in my treatment days on Tamoxifen. I tend to get them every 25 minutes. If I am under stress, they tend to increase in intensity. I also get quite cold in between the hot flushes!

The stiffness in the morning is increasing. Perhaps that is due to age! I am 55.

I have had two attacks of cystitis and my gallstones have flared up twice while on Arimidex

I have noticed breathlessness at times, but I have been told I have an extra heartbeat. I did not have the extra heartbeat before all my treatment.

I do not have any vaginal discharge which i did suffer from while on Tamoxifen. My problem is piles and an annoying itch!

Since starting Arimidex, I have not noticed my hair getting thinner, even though I lose a good few hairs in the shower. I felt it was getting thinner while on Tamoxifen for two years

I am on medication for irritable bowel syndrome, but I believe that could be down to stress.

I have not put on any weight since changing to Arimidex. I do exercise by walking regularly. I have had two bone density scans. One while on Tamoxifen and one when I started Arimidex. Both came back showing ‘normal wear and tear’.
I asked for, and was given calcium and vitamin tablets when I started Arimidex, however I had to stop them as they made me nauseus.

I have got less than 500 days to go until I complete the five years on tablets. Despite the side effects, I am going to keep taking the tablets.

I wish more people would tell us if it all gets better when the tablets stop!

Pollyanna

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What a good idea to pool our experiences on Arimidex!

I have been on Arimidex now for a year. I have some of the symptons that have already been mentioned ie lack of energy, overweight, muscle and joint pain, hip pain, swollen ankles.

My biggest problem hasn’t been mentioned. I have difficulty sleeping. I wake up every 1-2 hourly throughout the night.

I would be interested to hear if anyone else suffers from this as a result of Arimidex.

Also, as with Pollyanna, I would love to be reassured that things will get better when I have stopped taking the tablets!

I will keep taking Arimidex, despite the side effects - as I understand they are the best tablet to take.
4 more years to go!! Hooray!!!

Christiane x

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I have been on Arimidex since November 2006 and at first I had no side effects but recently I have got what I can only describe as an ache in my femur just below the hip. It comes and goes and when I am in certain positions it is worse i.e. sitting in my car. What bothers me is whether we should attribute these aches to Arimidex or whether we should be getting checked out for bone mets?

Libido has vanished, eyesight deteriorated.

17

My onc put me on Tamoxifen 15 days ago although I am 60 and post menopausal. I told him that I thought I would be on Arimadex and he said that long term effects had not been tested ( I think he was pulling the wool) as I know Tamoxifen is a cheaper drug. Should I go and inisist on Arimadec, although apart from night sweats and tiredeness I have had no side effects but maybe its early days. What should I do. Also since being on this website many of you talk about being HER2+ etc etc and I don’t even know what that means or which category I am. Should I get this info?

Norma

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Hi Norma

I was on Tamoxifen for two years and changed to Arimidex a year ago when my Onc was absolutely sure that I was post menopausal (I am 56 now, was 53 at diagnosis). I have just had my 6-monthly check up with him today. He categorically stated that Arimidex is an excellent drug and following Clinical Trials, is now considered to be the Gold Standard treatment for post menopausal women with hormone-receptive bc. You are right in that Tamoxifen is a much cheaper drug but you should not be denied treatment because of cost and may wish to ask your Onc again as to why he is not prescribing Arimidex.

As the others have said, the main side effect of Arimidex is stiff joints but I am prepared to put up with this if it keeps the cancer at bay. Hot flushes seemed to settle down after the first few months.

Hope this helps

Jo

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Thanks Jo

Will definitely ask the question as it has been bugging me. Not sure when I will see ONC again but suspect there will be one of them on hand when I start my rads in 2 weeks- hope so.

Thanks again

Norma

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I was told to I should start to take arimidex in June following 7 months of chemo and a mastectomy.
I researched it for two months and decided not to take it due to all of the side effects.
I had a grade 3 tumor with DCIS around it but no lymph node involvement.
I believe that having the mastectomy, removing my ovaries as a precaution and chemo to ‘mop up’ any stray cells was enough.
I was also offered radiotherapy but turned that down also.
What really mystifies me in all of this is that you only have to take it for 5 years so after that time and all the damage it has done along the way you are surely back to square one ie producing oestrogen and at risk again for all it does is inhibit its production?
I have also met quite a few woman in the breast clinic who have had bc return when they have stopped arimidex and tamoxifen.