Hi there, has anyone suffered with itchy feet since taking arimidex?
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
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
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
I have been on arimidex for 2 weeks and tonight my hip is really painful ~ can I take ibuferen? R
ANYONE PLEASE?!
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
Thank you so much ~ its really giving me gip tonight!
No problem hope you have a good nights rest!
Maria x
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
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
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.
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
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
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
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 ?
Very good idea to have everything about AI on the same thread, so
BUMP
up it goes!
Ca-va
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
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!!
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.