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Lets work together re Arimidex side effects

Yardo
Member

Re: Lets work together re Arimidex side effects

Hi,
Well, I'm glad to say I'm worried now!!! It seems there has been problems with almost everyone taking Arimidex. I've been on this drug for approximately two weeks with, thankfully, nothing to report. Is this likely to continue or am I bound to have some side effect?

tina57
Member

Re: Lets work together re Arimidex side effects

Hi All, been on Arimidex since July but have only had minor side affects compared to some of you, but i have notice a marked deteriation in my eye sight, the thing is I am a Diabetic type two and although i had the Diabetic eye scan at the begining of the year which was fine i now dont know if the deteriation is due to the Diabetes or the Arimidex. I have only had my new glasses for about six months and they are now nearly useless but before i go to buy new ones i wonderd if any one else had eye problems with the Arimidex.
best wishes to you all
Tina57

knowles
Member

Re: Lets work together re Arimidex side effects

Just to add to the general discussion!!! 56, been on Arimidex since May. Hands, feet stiff and painful first thing, wears off as day goes by. Have found COMFRELIEVE ointment fantastic (cannot take Brufen because of athsma) but it s a bit pricey! Tiredness, lack of confidence were awful, but since going back to work its all improving. If youthink about it, we really lost fitness going trhough all that reatment. Sex life has been terrible, but I'm now on Vagifem pessaries. Although this is actually oestrogen, it is so localised that it is not dangerous, even if yo are oestrogen positive. The benefits (normal vagina, bladder that doesnt let you down etc) are really worth it. Hot sweats are slowly getting better. I do get breast pain inthe cancer side, thi s has been scaring me until I read the letter above, I actually wonder if its due to the lymph gland removel. Presume fluid cannot drain so easily now from that breast, so it gets 'heavy'. Also want to just stop taking the pills sometimes.....
Sleep not brilliant, but hasnt been for years! Horrible dreams sometimes.....

Best medicine - babysitting my grandchildren, no time to even think!!!!

love to all, Zoe xx
p.s yes we are guinea-pigs in terms of long-term side effects, but others down the line will hopefully benefit from this.

Challsi
Member

Re: Lets work together re Arimidex side effects

Ah ha, at last I no longer feel as if it is all in my head or down to my age [which is what my onc tells me!].

Have been on Arimidex for 3 years now [aged 54], could not tolerate Tamoxifen at all, and have found the following.

For first year, joint pains were really bad but they have now settled down mainly into slight pain and stiffness in mornings in hips, ankles, wrists and hands/fingers, get a lot of pins and needles though in hands and arms.

Takes me a while to get really mobile in mornings but certainly bearable.

Hot flushes, yes still getting them although now only around 3-4 times a day and the sweats can still hit at times, very embarrassing when you are standing there dripping onto your boss's desk. Night sweats still a real problem.

Biggest problem is lack of sleep, I cannot get off to sleep easily [even with sleeping pills] and wake up roughly every 1-2 hours, this means I am constantly tired, not a good idea when you are in full time work, and not easily understood by employers [my onc just keeps saying I am tired because of my age grrrrr].

No major weight gain, but hair certainly has thinned.

2 gall stone flare ups and yes, I get breathless at times.

However, despite all of the above, I will keep taking those little pills as the alternative could be far more permanent in ending all the above side effects 🙂

Rgrds/Siggy

ForumMember
Member

Re: Lets work together re Arimidex side effects

Hi all reading through your comments this morning has really helped me understand the side effects re Arimidex.I also suffer with really bad joint and muscle pains and it is worse in the mornings and every evening,I have only been on this for 4 months and spoke to my GP last week who is contacting my consultant but now after reading some of your comments I am worried they will change it to another tablet that is not so effective.

I have the same side effects as Anne and some days are worse than others 4years and 8mths to go but it sounds like side effects are a better option than stopping or changing to another cancer drug.

Thankyou all
lol Jackie.

happyshopper
Member

Re: Lets work together re Arimidex side effects

hi all you arimidexees!!
How thoroughly reassurring for me when i read through all your messages- I could hug you all as I have felt that I'm going slowly mad with all these symptoms and not making sense of it all.
I started taking arimidex 2006- i was on tamoxifen for 2yrs (side effects not too bad except for sweats) but underwent recon and wasn't taken off tamoxifen during surgery (can cause blood clots) even though I was concerned. well, 10 days after surg for recon had a pulmonary embolism(blood clot on lung) and nearly died- unbelievably scary. thing was, they carried on giving it to me and it wasnt until i queried it with BC nurse as side effects say it can cause blood clots they agreed that yes, I should stop taking it! I had had my ovaries removed the yr before(aged 40) so was already plunged into the wonderful world of menopause which meant i could then be put on arimidex. I was quite excited about going onto this, especially when told there are much less side effects . WRONG!
joint pains- I feel like a little old lady in the morning, hobbling around before i loosen up! I ache from head to toe most of the time but hands/feet /knees the worst
tiredness- have never felt so knackered in my life! By the evening i just want to curl up in a little ball! I used to be incredibly active and still try and maintain this but do ache afterwards
Emotional- can't believe how emotional i get- burst into tears at the drop of a hat! Really embarrassing at work- am rapidly loosing any street cred but just dont seem to be able to help this
confidence- this has taken a complete nose dive
However, despite all that i will continue taking it (been on it 2 yrs, no improvement of side effects!) because you are all right - the risk of not taking it doent bear thinking about!
Thank you ladies- I cant tell you how much youve cheered me up by realising I'm not going completely bananas just yet!
lol Anne xx

AdrienneG
Member

Re: Lets work together re Arimidex side effects

I have been on Arimidex since May 2006.

Every now and then I think about coming off it, but don't quite find the courage. My feet hurt quite a lot but not all the time.

However, I'm frightened to walk anywhere in case they start really hurting and I can't walk back. I also have small skin eruptions in my upper back - these are often itchy and I don't realise until I scratch (and take the tops off) that this has happened again. They take ages to heal. They feel like a cross between a spot and a bite.

My memory has definitely been declining slowly over the last year or two but I don't know if that's Arimidex or age - I'm 52. And I have zero sexual desire, and in the last year have tried to have sex twice (for husband's sake and to try and get some intimacy back) and it has been very painful, even using lubricants. There has definitely been thinning and shrinkage in the vaginal area.

If they had told me that sex would be off the menu when I began taking the Arimidex 2 years ago, I would not have started taking it. I'm too young not to have a sex life. This is pretty much the one thing they know will happen to pretty much anybody on Arimidex, but my onc didn't tell me. I have read today that there are solutions, which may help, so I am off to the doctors this week to ask about 'female viagra' and something called 'replens;' which apparently works for a few days at a time.

My onc has said the feet will stop hurting pretty much as soon as I come off Arimidex, but I don't know about the sex life. And my onc isn't somebody I could ask about that.

Oh, well, nearly half way through the course now - only 2 years 7 months to go!!!!

clunkshift
Member

Re: Lets work together re Arimidex side effects

For the record, I've been on Arimidex for 5 months and suffer achy joints in fingers, thumbs & wrists.

and I'm male, so it is not a hormonal issue, just side effects,

sheels
Member

Re: Lets work together re Arimidex side effects

on arimidex, have researched this as much as possible and it appers to be the best option.

i too, was origially given just enough for 2 weeks, went to mt gp who immediately prescribed 2 months supply and made it a repeat pres.

have had a few side effects, mainly nausea and tiredness, but if this the price we have to pay, then i am sure it will be more than acceptable, HOPE SO

flyright
Member

Re: Lets work together re Arimidex side effects

Great idea for a thread. I feel like a bit of a wimp as I started Arimidex but after 8 weeks I was suffering so much joint pain that my onc quite easily persuaded me to go onto Tamoxifen.

My joint pains were all over - terrible back pain, dead hands, and knees that refused to bend so I could not squat down (surprising how often you want to squat when you can't). I had to climb the stairs on hands and knees. This was really distressing me, and I must say I am happier on Tamoxifen, though reading here I worry a bit that I am not on the best drug.

My onc took the view that my mobility was the number 1 factor in terms of my physical and mental health and felt it was more important that I was able to enjoy life (I horse ride and dog walk a lot). I think I agree with him as there is a limit to the amount of disruption I am prepared to put up with to keep the cancer at bay.

Loved hearing everyone's views - we are all different, and we all just do the best we can with what we have been given.

BessieBoo
Member

Re: Lets work together re Arimidex side effects

went to get my perscription for it today, as running out of the box from hospital, and he would only give me one month at a time!! Whats that about? He was quite happy to give me 3 months of HRT, but couldnt persuade him!!

lyndu
Member

Re: Lets work together re Arimidex side effects

Tracey,
Don't know about NO side effects, but I've been on Arimidex since about March and I get a little stiff, and I have slightly creaky fingers - but nothing like the side effects that some people have. I think we hear about the people who are suffering because they're the ones who need some help and support. If it's doable, you don't post about it!
I do hope your mum is one of us lucky ones with minor effects, arthritis is quite enough to be doing with on its own (oh, I do get the hot flushes, though!)

Lyn

cavabien
Member

Re: Lets work together re Arimidex side effects

Very good idea to have everything about AI on the same thread, so

BUMP

up it goes!

Ca-va

TraceyP
Member

Re: Lets work together re Arimidex side effects

My Mum has just started taking Arimidex. She is an arthritis sufferer, so joint pain is always with her. When do the side effects kick in, or are there lucky ones out there that dont suffer at all ?

billiejeanking
Member

Re: Lets work together re Arimidex side effects

Hello Everyone

I've been on Arimidex for nearly 6 weeks. I get neck, shoulder and lower back pain. I also think twice about bending down - getting back up is no picnic! The other day I didn't think I was going to make it back to work - I felt so weak. All I want to do is sleep and sleep and sleep. I feel like my head is full of glue and has a tight band around it. Think I could cope with everything if I had a bit more energy and didn't want to get my head down for 40 winks all the time!

Hopefully it will get better!

Love

Lynda xx

IreneM
Member

Re: Lets work together re Arimidex side effects

Had to write to add to my first post last month.

What a transformation! Had an app with my surgeon who pursuaded me to persevere with arimidex for another 6 wks, equalling 3 mths in total. I did and it was worth it. After another wk the pain subsided. I still feel a litttle stiff at times, but not pain as such. Still have vaginal dryness, but no stress incontenance. So all in all, things are much better.

I have also joined weight watchers and lost over 1 stone (2 more to go). I am sure this has helped as my joints are not carrying as much weight. I am also exercising using an exercise bike at home. It's boring but fortunately i can watch TV at the same time!

Hope this gives some of you hope, I feel 100% better than last month.

Irene

rosieposie
Member

Re: Lets work together re Arimidex side effects

Hello Frobbi
happy to say that I woke up the next day with a pain free hip ~ took high strength Ibuprofen and I did get a reasonable nights sleep [always wake up lots] its early days for me - just 2 weeks but am anticipating more of the same. having a bone density scan in a couple of weeks and will ask about joint damage. when will you come off Arimedex or is it a long term thing for you? I'm worried about the hair thinning too...... Rosemary

Frobbi
Member

Re: Lets work together re Arimidex side effects

I have been on Arimidex for 4 years. I am able to tolerate the hot flushes but the joint pain is a different story. I ignored them in the beginning as it was listed as a side effect. When my knees felt as though they should belong to some one else I began my search for one answer. The question I put to Astra Zeneca and later to orthopedic surgeons was " Has anyone done a study to find out if it's not just pain but joint degeneration?"I did not receive an answer. No one knew!!! Well it's been one year since I had a double knee replacement because I had no cartilage left! Did this doctor have a clue,,,nope!! I finally found that Monash university in Australia is doing a study on E+, post menopausal women who are given aromatase inhibitors and are following them with xrays and MRI's. We may be vindicated yet!! The problem is that I cannot obtain any info from them. I don't know how many joints they can replace before I become a bionic woman.LOL. My finger joints have gotten so bad, I had my wedding ring re sized 2 sizes larger.
Oh yes, I am not now, nor ever was overweight but now the LDL/HDL cholesterol thing is out of whack.Another tiny tidbit,,a year before my knee replacement I had my gall bladder removed! Yes I am leaving body parts all over!
The real problem, my friends and fellow sufferers is not really the drug itself but the TOTAL lack of estrogen! Even in menopause we produce some but on the aromatase inhibitors we have none.\

Oh Rosie, do you have anything that resembles AdvilPM (ibuprohen + Diphenhydramine citrate.) It dulls the pain and helps you sleep.

ForumMember
Member

Re: Lets work together re Arimidex side effects

Hi Birgit, sorry to hear you are having so many problems with Arimidex. Like you sugar and alcohol set off my flushes so I'm trying really hard to avoid them. Unfortunately I love a glass of wine! ah well, but for me the pro's out number the con's so i shall continue for now.

keep smiling
Mariax

Birgit
Member

Re: Lets work together re Arimidex side effects

Thought I would add my comments again. Read with interest all the posts and also the other post relating to Arimidex with regards to high cholesterol. My lipids (fat in blood) where up on recent bloodtest, and I now re-read the leaflet in the Arimidex box and it does state this as a side effect. Now having cholesterol test to see where I am at with that. If it is up, it must be down to the meds as I have a very low fat diet, lots of exercise etc. What is more worrying is that they have just discovered an underactive thyroid - loads more tests coming up as I also have a large swelling in the thyroid gland. Apparently (as per my GP) this can be another side effect of Arimidex as it basically interferes with your whole hormonal balance and affects the pituiatry gland. So yet another side effect they don't warn you about! Feeling more of a guines pig every day with this relatively new drug. Also having another DEXA scan to see whether my bone density has deteriorated - and then possibly Biphosporates. I am really beginning to wonder whether I should carry on with this - been on it 2 1/2 years since recurrence. Can't go back on Tamoxifen as I suffered severe eye damage (night blindness, loss of peripheral vision) , so Arimidex seemed to be the only choice. Tried Femara, but although the joint pains improved, the hot flushes came literally every hour on the hour - just could not cope with that. At least on Arimidex I get mainly night sweats and very few daytime flushes - unless I have a drink or something sweet. It seems the sugar in my bloodstream sets of immediate hot flushes. Has anyone else found this? The extreme tiredness could of course be down to the underactive thyroid, but although I have been on meds for 3 weeks now, sofar no difference, but obviously will have to give it more time.

I know I sound like a real 'moany', but I am just so fed up. It just seems to go on and on and sadly there is no evidence that even if you take these hormonal drugs that the cancer will not come back - just hold it off for a bit.

I would be interested to know whether anyone hass decided to discontinue with their treatment and has had a recurrence?

Thanks for listening girls.

Birgit

ForumMember
Member

Re: Lets work together re Arimidex side effects

No problem hope you have a good nights rest!

Maria x

rosieposie
Member

Re: Lets work together re Arimidex side effects

Thank you so much ~ its really giving me gip tonight!

ForumMember
Member

Re: Lets work together re Arimidex side effects

Hi Rosieposie, I take ibruprophen, it takes a while for it to take affect but it dulls the pain and allows me to get off to sleep.

mariax

rosieposie
Member

Re: Lets work together re Arimidex side effects

ANYONE PLEASE?!

rosieposie
Member

Re: Lets work together re Arimidex side effects

I have been on arimidex for 2 weeks and tonight my hip is really painful ~ can I take ibuferen? R

Bevvey
Member

Re: Lets work together re Arimidex side effects

Hi Aroma

I have had three bouts of lymphdemia but I have been very lucky, in our hospice we have a very specialised lymphdemia physio, she is heaven, I had to go once a week for about 6 weeks each time and lie down on a couch and she gave me this incredible massage, and my tummy was making very rude noises which is a good sound as it means that the physio is doing her job and she is helping move the fluid around your system. Might be worth checking if you have a hospice near you who has a specialist, but you need to get referred by your breast cancer nurse. I also have a sleeve which I am supposed to wear for long distance journeys and I've noticed that I've become a wether girl, as my arm aches really bad when the weather is going to change and the pain was incredible bad the day before it snowed. I've not been on this site for 5 years when first diagnosed, glad I came back today as I was getting worried about the joint pains, but so far not suffered hot flushes. Cod Liver oil here I come! luv n hugs Bevveyx

aroma
Member

Re: Lets work together re Arimidex side effects

i know what you mean about lymphdemia as ive just developed it in my arm and under as well .its really annoying as i was beginning to do so well and hoping to return to work and there just dosnt seem to be much advice on the forums about this . i have to wear a sleeve everyday which is a pain to get on! my arm aches all the time and sometimes drives me mad, also the joint aches from the arimadex dont help either . i think there should be a lot more infomation as to the side effects of these drugs, but really its a small price to pay for prolonged life. anyone esle got any advice as to the management of my arm , the clinic was very busy and i didnt like to ask to many questions as they were stacked out with ladies wating to be seen . seems its quite a regular thing after surgery, to develop this or is it only if youve had nodes removed. lynn x

jennyw
Member

Re: Lets work together re Arimidex side effects

Hi, Jacton. Yes I have incredibly itchy feet which can drive me mad - mostly deep inside the ball of the foot. I think it may, however, have been from the chemo (FEC) and its effect on the nerve endings (known as peripheral neuropathy and itchiness is a mild version and never referred to in research literature - some people lose sensation in feet altogether), after which I took Arimidex for 3 years until it failed. Maybe it was aggravated by Arimidex but I'm sure now it will never go away. Now nearly 18 months on, I still have itchy feet. I started on Femara 10 weeks ago and have been having joint pain.

Norma, don't be too sure that tamoxifen in certain cases may not be the best choice. I have bone mets and osteoporosis and put the weakening of my bones down to the Arimidex. Tamoxifen on the other hand strengthens bones. (It's actually illegally used by body builders for just this effect!) The reason for a switch from Tamoxifen to aromatase inhibitors, the best of which, btw is Femara in terms of controlling cancer according to comparative trials but even more expensive I think, is because of the effect of tamoxifen on endometrial and uterine tumours. If you have regular checkups, such as ultra-sound, and your uterus is ok, or if you've had a hysterectomy, tamoxifen may be the better choice. If you have osteoporosis, tamoxifen is also a better choice as it significantly strengthens your bones and if you want to avoid having to take bisphosphonates - again relatively new drugs with some horrendous side effects if you're your unlucky to be sensitive to it. I had tamoxifen for the max. 5 years so I can't take it again, though it worked for me then.

As well as exercise to keep your bone strength, taking cod liver oil (2 teaspoonfuls a day) supplies the vitamin D and oils that your joints and bones need, particularly in the winter months when there's no vit. D from sunshine unless you're on a sunshine holiday!

Lynnferg,
As to the swelling under your arms and in your side, I think you should regularly get lymphatic drainage at a breast care clinic - needs to be a physio trained in cancer treatment though. It makes a huge difference to how you feel - tiredness can arise from sluggish lymph circulation - also infections, etc.

I think that lymphoedema effects are underestimated and it would be good to have a forum category dedicated to it as it can arise during, after or even many years after treament ends and needs careful management so health and quality oflife are not jeopardised.

Wishing you well,

Jenny

jacton
Member

Re: Lets work together re Arimidex side effects

Hi there, has anyone suffered with itchy feet since taking arimidex?

Alison44
Member

Re: Lets work together re Arimidex side effects

Hi All,

Interested to read about diet - can anyone get a nutritional therapist from the haven - shall look into this - am currently launching myself into milk free diet (tho just had some m and s chocs bought for me) and loads of veg (veggie anyway) and nuts and seeds etc. Reading lots about appropriate diet - and yes cut out coffee/alcohol and only honey - (trying not to eat refined sugar) feel loads better but as only doing this for less than a week will see....Only 4.5 weeks post surgery so not quite ready to implement exercise programme - but will do this....

Am on Arimidex, feel hangoverish some of the time, then full of energy, and feet and ankles ache/sore, sweats thick and fast - 4 in the night start with waking up with nausea - chill pillow helps - just put on some sea sick bands (work on acupressure points). Becoming more articulate, but memory not so good could be post surgery or possibly the arimidex ?

Taking supplements (trying omega 3 tomorrow ) hoping the joint aches will lessen cos feel a lot older than 47!

Bye for now.

Cat123
Member

Re: Lets work together re Arimidex side effects

I was very interested to read your comments Clarabella. I'm 49 years old, ER/PR positive/HER2 negative. Stage 3. I've just finished chemo. Have refused rads and hormone treatment. Like you, I've met a number of women whose cancer returned soon after the five year mark. Seems to be an alraming coincidence!

Cat

Christine1505
Member

Re: Lets work together re Arimidex side effects

I started taking arimidex in May 07 following lumpectomy and radiotherapy. I'm 51 and just post menopausal. My cancer was ER+ve and Her2+ so arimidex looks like a better option. I feel lucky after reading the postings here that I have had no side effects. However, I do eat a very healthy diet now - loads of veg and fruit, seeds, beans, pulses etc. No alcohol, lots of water and virtually no refined sugar. I feel good. I also walk or cycle 4 -6 times a week for 30 - 60 mins. I take vitamin and antioxidents and flax seed oil (omega 3) as recommended by my nutritional therapist at Breast Cancer Haven. I've also had some homeopathy. Don't know if these things help but I can honestly say physically I'm fine. It's living with the Her2 status which is hard.

Good luck to all.
Christine

ForumMember
Member

Re: Lets work together re Arimidex side effects

Thanks Irene,

Hubby is hiring an air conditioned car for me, i am not going to go through what i did in Lanzarote.

Was in Tesco on Wednesday with my daughter and one came from nowhere, i was at checkout got purse out and the next thing was dripping on the belt moving along, the young girl on the till was horrified, i am so pig sick of telling people it is a cancer drug making me sweat so much. As for make up there really is no point i just sweat it straight off my face.

I went back to my doctor yesterday and as he is really very sympathetic i explained everything to him, he was so sweet, said it was intolerable for me in this day and age to have to put up with that after all i had been through already, (said he was lovely) he has upped my dosage of clonidine as he says i was on a very tiny dose and has even said i can up it myself on holiday if i need to. Well perhaps there is some hope for me after all. He also said any worries i had whatsoever i was to go and see him no matter how trivial they may seem to me, he is there to help me and that is what he wants to do. I already feel a weight has been lifted from my shoulders, his name by the way is Dr Guy Skilton from Weeping Cross Surgery in Stafford. So anyone in my area that is the GP to see.

On another thread i posted that I have a new very expensive crown fitted on Tuesday, i have been in total agony since, cant eat only suck my food, hope to God that it settles down before Corfu, my dentist said it is because he did a lot of poking around in my gum and the gum is bruised, he gave me three days antibiotic because of the no lymph node and infection thing but today is Friday and still last night i got no sleep with it! You know how it is no sleep makes us girls shattered the next day and our flushes and sweats a whole lot worse, you know how it goes round and round!

Anyway i am braving it on the bus today into town, can't wait to drive again but hubby still nervous of it with my swellings being under left arm. My daughter saw a bag in a beautiful little boutique and i thought i might go in today and buy it for her for Christmas! My first Christmas purchase! Think sometimes i need to get out of the house as i tend to brood when i am alone for long periods then i sweat everywhere. Have packed my shopper with my towel and change of underwear just in case! The weather forecast for today is good so silly to stay indoors.

Love to everyone out there
Suzy

IreneM
Member

Re: Lets work together re Arimidex side effects

Oh Suzzanne, I really feel for you. I do have flushes every hour, and do sweat but not so bad I have to change my underwear, that must be awful for you.

I just wanted to say that when i went to Turkey in August I didn't notice my flushes at all. It was so hot every hour of every day (40+ degrees in day, 27 at night) I think I flushed but didn't feel them! First one I noticed was on the plane coming home, weird ay?!

Enjoy the hol, chuck water over yourself or spend lots of time in the pool.

Love irene

janicem
Member

Re: Lets work together re Arimidex side effects

This thread is brilliant! My Arimidex side effects are:

Stiff very painful joints (all of them) especially lower back and hips - I take opioid drugs for the pain
Extreme tiredness to the point where I cant think straight
General weakness
Unable to sleep at night even with sleeping pills
Very poor concentration
Thinning hair
Skin fast losing elasticity

I darent stop taking it though because of a poor prognosis.
Janice.

jane68
Member

Re: Lets work together re Arimidex side effects

Hi Chalee
Thanks for the reply
I have had pain breast pain in my remaining breast from about the time I started Arimidex (2 weeks ago). Today I had it checked out, the ultrasound was clear and tissue appears normal. Nobody mentioned arimidex side effects, thats just me looking for an explanation. Surgeon suggested evening primorose oil ?

Jane

chalee
Member

Re: Lets work together re Arimidex side effects

Hi Jane, Yes I have had pain in my remaining breast which my surgeon assures me is referred from my ribs. I've had a bone scan and had the rib area xrayed which didn't show anything. My last mammogram was ok. He says that Arimidex shouldn't cause breast pain as such. So for the moment I'm going along with that and assuming it's more bone/muscle/joint pain referred from the ribs. It'll be interesting to hear if others have anything similar. x

jane68
Member

Re: Lets work together re Arimidex side effects

Has anybody had breast pain/tenderness with arimidex ?
Jane

olivia07
Member

Re: Lets work together re Arimidex side effects

Suzzanne - I think you will find the flushes get less with time. I started Arimidex in April and they are only now just settling into a pattern of 10 a day but they are bearable and the busier I am the less I seem to let them get me down. I do a lot of yoga and work out in the gym 4 times a week which I feel helps me. Funnily enough when I was in Spain in July I hardly noticed them but as I hit Gatwick they were back. When I was on Tamoxifen I used to sleep on a towel until I started on Pro-Banthine which stopped the actual sweating. Maybe worth a try. It worked for me and I was nearly drowning at times!
Have a wonderful holiday in Corfu, an island I really love.

ForumMember
Member

Re: Lets work together re Arimidex side effects

Thanks Olivia07 just realising i am not alone helps wonderfully. I am seeing my doctor on Thursday about the Chlonidine, perhaps uping the dose as hubby and i are off to Corfu a week on Friday and I do not want the same problem as i had in Lanzarote. Hubby has suggested we spend most of our time in a nice air conditioned hire car, can't believe it as i am the worst sun worshipper ever, usually spend all summer out in the garden with my books! I sympathise with everyone else who has their lives disrupted by these side effects, had massive night sweat last night and have given up the duvet for sheets and blankets but that extra one i put on last night as i was cold going to bed put my temperature into overdrive! It does disturb your sleep and as I had a dental appointment this morning for a new crown I was so tired I almost fell asleep in his chair!

I now carry a hand fan around with me and a change of underwear,and a small towel. My pharmacist who also had BC told me that the side effects do wear off in time, I live in hope for that day, even 4 flushes or sweats would suffice. Poor hubby has no idea what he is walking into at night when he returns from work, he very timidly puts his head round the door to see if i am smiling or crying, is emotional mayhem a side effect of this drug also.

This week being the start of breast cancer month has been hard, I do so support the cause and myself am on a mission to tell women that i had two different cancers in my breast which neither of them were a lump, the popular belief being that all breast cancers are a lump, well mine were not which amazes people. Everywhere i have been today even the bus shelter where i get my bus had a big poster advertising it, my dentist had a leaflet and the restaurant where i eat had a form for sponsoring a walk in aid of it. I just feel sad when i see all this and realise what we have all been through, the surgery, the treatment and all its side effects. I just cant seem to let go that this dreadful disease is still out there and affecting so many peoples lives. My sister in law was diagnosed two years ago and i remember being terrified for her never ever thinking the same could happen to me. My cousin is 9 years on from her diagnosis and tells me that now without any recourrance from the initial diagnosis and treatment she never even thinks about BC until she goes for her 3 yearly mammo. She says it was a small blip in her life! I think when we have these side effects it is a constant reminder that we have had BC and that thought alone is enough to bring on a flush!

My surgeon was not sympathetic to my flushes and sweats and just told me to put up with it, fortunately my GP has been sympathetic and hence the Chlonidine but I had to mention it to him as he was not sure what treatment to give to me. I do think if i could have some control of my flushes and sweats it would definitely aid my mental state as well as i could resume my old life again. At present i have not returned to work and am beginning to find the financial situation a bit hard, I work in a charity shop but it involves a lot of standing and heavy lifting, furniture and china etc., hubby says he does not want me to go back, thinks the stress will tire me out and wants me to look for something a bit lighter but in my neck of the woods there is not a lot going on retail wise and there are about 40 to 50 people for every job.

God I had better finish this is looking like an epistle, all the best to everyone out there.

Spooks
Member

Re: Lets work together re Arimidex side effects

I am finding Arimidex much better than Tamoxifen. I lasted 3 weeks on Tamoxifen, feeling very nauseous then getting a huge, painful swollen ankle/lower leg. My surgeon arranged for an immediate Doppler USS scan for DVT, but it came back clear. He took me off Tamoxifen immediately then a week later I started on Armidex and have been on it for 4 weeks now. Other than the hot flushes and feeling slightly more tired, I don't seem to have any other side effects whatsoever....maybe it's early days yet though. If the hot flushes become too unbearable, I shall ask my GP for some of the medication mentioned on this thread for it.

olivia07
Member

Re: Lets work together re Arimidex side effects

Suzzanne - when I was on Tamoxifen I had terrible hot sweats which were totally interfering with my quality of life. My husband is a GP and suggested I try Pro-Banthine which I did and it worked well in that it is a drug to stop excessive sweating. I still got red and hot but no sweat and it made a huge difference. Goggle it and you will see what I mean. You can only get it from a GP. Am now on Arimidex and flushes are more tolerable. My heart goes out to you - even though it was 17 years ago I can still remember dripping and the embarrassment at social occasions. Let us know how you get on.

ForumMember
Member

Re: Lets work together re Arimidex side effects

What a fantastic idea to pool all our experiences with our Arimidex. I have been reading the comments everyone has made and can agree with most of them. For me the worst thing is the flushes and sweats, so uncontrollable, had one yesterday in Debenhams in Birmingham at the till, sweated all over my purse, getting money out and in the end had to buy new underwear to change into as i had forgotten to take spare with me. Just returned from Lanzarote where the sweats were unbearable, reduced me to tears on a few occassions. my doctor put me on Chlonidine 1 tablet 3 times a day about 4 weeks ago and though that has just about taken the peak off them they are still dreadful. It is the sickness I feel after a sweat and the energy it takes out of me. I usually have around 16 a day! I have been on Arimidex since July 2007 and am only now noticing I have pain in my hand (same one as lymph nodes removed) and cannot grasp anything in the morning. I wake with pain in my arm at night and have what i call fizzing in my hand constantly.

I try to think the stronger the side effects the stronger the drug but when I am dripping in sweat I long for my HRT back though I know it can never happen. I must admit I look with envy when out at other people who have their lives going on as normal who are not sweating and do feel that it is the quality of your life that counts. To those people who gave up their drug treatment to attain this then I admire their courage and hope that they have very long and fruitful lives.

Weight! I have already put on 10 pounds and my winter clothes just won't fit. How much more weight will i put on?

JosieR
Member

Re: Lets work together re Arimidex side effects

I also like being alive, if a bit battered!! I've been on Arimidex for a year now and, yes, the side effects can be a pain (literally). However, if this little white pill, which according to my Onc. is now considered to be the Gold Standard treatment for postmenopausal hormone-receptive breast cancer, is going to do its job and keep the cancer at bay then I am happy to take it. I would say that the side effects have lessened as time has gone on so give it a little longer IreneM and see how it goes. Despite the side effects, I am leading a busy and happy life once again, something I never thought I would do when I was diagnosed 3.5 years ago.

Jo

chalee
Member

Re: Lets work together re Arimidex side effects

I'm with lynnferg on this. I like being alive, if a bit battered! Stick with it IreneM, things might ease up for you in time. I hope it does. x

IreneM
Member

Re: Lets work together re Arimidex side effects

I've been on Arimidex and Bonefos for 2 mths now. I started out fine, but recently started getting bad joint pain in my knees and feet mainly but basically all over. I have also started getting muscle pain, mainly in bed at the end of the day (like when you have exercised hard which I'm not fit enough to do yet!)

I have hot flushes about hourly, including through the night so sleep pattern terrible = very tired most days. I have facial hair too, all be it light. Have vaginal dryness, thin hair and for the last 3 days have had the sort of headache you get after a night on the booze but I'm not drinking at present.. This could be de-hydration due to the sweats so am drinking lots of water. This brings me on to the most depressing side effect, stress incontenance, apparently due to my body not having oestrogen to keep the bladder toned.

I also feel depressed but think this is due to simply being fed up with my physical appearance and condition. Pretty miserable ay! Thinking about coming off Arimidex all together but don't want to go on Tamoxifen.

Irene

lynnferg
Member

Re: Lets work together re Arimidex side effects

I've been on Arimidex and 3 weekly Herceptin for around a year now. I think that most of my side effect are due to the Arimidex, judging from other people's comments. I will be having Herceptin indefinitely and the Arimidex will be reviewed after 5 years if nothing else has changed.

I have the following side effects:
Sore joints - particularly in my hands, but it's now very mild and only really a problem as regards my playing the bass guitar. I used to suffer from unresponsive feet when I got up from sitting, or got of out of bed. I looked like a drunk on early morning trips to the toilet, but that seems to have got better rencently. Numb hands - particularly when waking up, so I have to be careful about grabing the glass of water and failing to make proper contact.
Tiredness - I still get regular bouts of over-tiredness and have to go to bed for a few afternoon naps to catch up. However I’m working pretty intensively 3 days a week, so it’s not too major a problem.
Cold-type symptoms - I usually seem to have a runny nose and bloodstained hankerchief. Also regular mouth ulcers and cold sores.
Weight gain - I’m much bulkier around the waist than I used to be, as well as having fluid retention around my armpits where the lymph nodes (29 on one side, 11 on the other) were removed. But is this really a result of the drugs?
Menopause type symptoms - I’ve been through various versions of the menopause 5 times now as a reuslt of on & off HRT, on & then off Tamoxifen, and now Arimidex. I never had too much in the way of hot flushes, but I used to get sleeplessness the 1st time round. Arimidex increases the menopausal skin aging, vaginal dryness & soreness, being too hot in general (my 15yrs old son likes to warm his cold hands on my back) and generally turning into my mother.
Fragility - I’m much less emotioally robust that I used to be. More timid, less keen on adventure & new experiences, overwhelmed by comparatively minor events, and more susceptible to stress.

Reading what I’ve just writen, it sounds awful, but it’s not. I still do what I want to do and I’m very happy with my life, although I’m lucky that I’ve got a lot of support from family, friends & work.

Suggestions for things that might help:
Walking & swimming - I do lots of it. I don’t know if it helps my symptoms, but it certainly improves my general fitness & state of mind.
Glucosamine - I wonder whether I suffer less from joint pain than many other people because I have been taking Glucosamine (usually used to treat arthritis) for several years. Not sure if it helps the Arimidex effects but it has certainly made my previously loudly creaking knees a lot quieter & less painful.
‘Liquid Silk” lubricant - Highly recommended for making sex possible, if not completely pain-free. Even oral sex is a problem these days, as I get sore faster than I get excited, but Liquid Silk is the best lubricant I’ve found, and you can get it quite cheaply via the internet.

Arimidex may cause problems, but I’m not giving it up because I’m absolutely convinced that it’s helping to keep the cancer at bay and I like being alive, even if a little battered.

Love to you all.

ForumMember
Member

Re: Lets work together re Arimidex side effects

Lying awake yet again last night (other problems causing it at present) but yes, have found since starting Arimidex cannot drift off to sleep, when I do, I wake up an hour or two later. Seems we all have similar problems.

Whilst awake last night I was thinking and came to this conclusion: 50 odd years ago there were hardly any treatments for BC, now there are so many different kinds of BC and many different treatments. It is only by doing the treatments that the doctors can find out what actually works and what is more beneficial in each individual case. If you compare 50 years ago to now, the positive outcome that a lot of us now have, isn't it better that we are to some degree "guinea pigs". Just think what it will be like 50 years in the future, hopefully an almost instant cure. This cannot be achieved without the trial and error of our treatments in this our present day. Each course of action will definitely improve the longer it goes on, the more research and the more knowledge that is achieved. I try to look at it this way: I am helping the future like the past has helped me. I sound like "Confucious".

Love K

olivia07
Member

Re: Lets work together re Arimidex side effects

Clarabelle - you make an interesting point about the 5 years. I was on Tamoxifen 17 years ago when I was first diagnosed with BC. It recurred in the same breast this April and I am now on Arimidex for 5 years. I only took Tamoxifen for 3 years as the side effects were unbearable but I wonder if I had gone the full 5 whether it would have recurred. 5 years seems to be the baseline in my opinion. I also think we produce less and less oestrogen as we get older. The only side effects I get from Arimidex are a few hot flushes every day but they are bearable and I do get tired but I think that is just old age and a stressful life.

Clarabelle
Member

Re: Lets work together re Arimidex side effects

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.