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San-Dee's avatar
San-Dee
Member
9 years ago

Arimidex Woes

Hi,

I was prescribed Arimidex and read as much as I could about it before swallowing that first pill 5 weeks ago. The first 2 days were fine and then the hot flushes hit me like a sauna on steroids. I thought, well, I'll just keep going, maybe things will settle down and even started taken them at night instead of morning hoping that would help. Nothing changed .... except .... I became so nauseous. Then the pins and needles started. Thought I was a candidate for a heart attack there! These finally settled, so I thought the hot flushes would as well. No such luck. Then the sleeplessness took over. After several nights of sleep deprivation, the nurse at the clinic noticed my haggard look and asked what was going on. She suggested I take a sleeping tablet, which I did, only to wake up the next morning in wet sheets. I was so out of it, I didn't realise how hot the hot flush was so lay there pumping out the heat and perspiration all night! 

If this is just the beginning of the god awful side effects, I dread to think what is waiting for me down the track and over the next 5 years. I mean, what is my quality of life worth? 

My breast care nurse suggested I stop taking them until I see my oncologist, but I am trying really hard to persevere so that I can say to my onc in a couple weeks,"Well I gave it my best shot, but enough is enough!" 

Has anyone out there experienced similar side effects and if so, how did you cope with them? This has really put me off even wanting to try an alternative drug. 

San-Dee

 

9 Replies

  • Hi San-Dee,

    If the side effects don't settle why not ask your doctor if you can switch to tamoxifen. Tamoxifen does work almost as well as aromotase-inhibitors in preventing recurrence in post-menopausal women. 

    Chemo put me into menopause three and half years ago at the age of 46. I am now 50 and I have been taking tamoxifen for those 3.5 years with no major side-effects. I had mild hot flushes to begin with but they have faded away and maybe my hair is a little thinner than it used to be but that's about it.

    My oncologist has suggested switching to an aromotase inhibitor as I am post menopausal but I have been reluctant because I have read so many posts about the horrible side effects. My oncologist is okay with my decision to stay with tamoxifen. 

    Of course tamoxifen is not perfect either. Some people get unpleasant side effects with it too and there is a slightly increased risk of uterine and endometrial cancer. But if the arimidex is making your life miserable it might be worth a try. Good luck. I hope things improve for you.

     

  • Promise I have no shares in this mob do wanted to suggest getting one little gadget that has saved me do many timed as I suffer from serious joint pain due to unrelated medical conditions plus permanent sciatica due to broken spine.I

    I paid more for it - a nerve stimulator but Logan has it on sale for $13 and free shipping. Kind of like buying 3 coffees but for me has saved me from painkillers or being bedbound...

    https://www.kogan.com/au/buy/nerve-stimulation-massager/

    Do check it out.

    Jel

  • Hi I can relate to your comment about how medication makes you feel. Some days it's hard work to hide the tiredness and smile and say yes good thanks! Hopefully it is an adjustment and your body will adapt and some of the side effects will ease.

    Take care from Christine xx 

  • Hi Everyone,

    I know we are all different and no two regimes will have the same side effects for us all. Now the joint pain has kicked in and I feel older than my 84 year old mother! Good grief! Just as well we cancelled our big O/S trip where we were due to fly out next week!

    I am so sick of this!!

    Anyway, I just needed reassurance I suppose. I'll see how I go, have a good long chat with my oncologist when I see him, crunch the numbers and take it from there. 

    Thanks again for the support. Sending you all hugs

    San-Dee

  • It all seems very variable ( like so much cancer treatment). I am on Femara as I am post menopausal (three and a half years) and have had virtually no symptoms at all. I switched to Arimidex for 3 months (sudden slight hair loss problem, was testing if Femara was responsible, always somewhat unlikely as I had been on it for years) but no change (hair or symptoms!) so switched back. Hair has sorted itself out  - delayed chemo issue I think, I reckon it takes a long time for hair to really settle, my colour has been changing ever since it grew back - mostly less grey so I am perfectly happy with that!

    I admire your persistence, it may be worth slogging through a  bit longer so you can say you have done your very best, but sounds like you may at least need to try something else (rather than just stop).

    Best of luck. It's really hard but try not to anticipate the next 5 years, dealing with the next 5 days is a good plan at this stage. We can all wear ourselves down and out thinking about grim prospects - take one step at a time, conserve your energy and you may well find that things are better than you feared and that, best of all, you have managed the problem and can move forward.

  • Anonymous's avatar
    Anonymous

    Hi San dee

    I have been taking Arimidex since February and had similar problems.

    Then I started taking it in the afternoon will less side effects.

     

  • Hi I have been on Arimidex since November last year I did notice at the beginning the hot flushes were more intense they have settled now. I'm still getting them but not as intense. I started taking mine at 6 at night but I have now changed to 9 at night. Not sure if it is the change of time or my body getting used to it I'm sleeping better not as many hot flushes at night. I also take panadol osteo for the joint pain. I also take vitamin D and caltrate as not good for the bones

  • Hi San-Dee,

    I know how hard it can be to have your quality of life affected by an aromatose inhibitor. I switched from Tamoxifen to Letrozole last October after having my ovaries removed. In my experience (and what other ladies and my osteopath, oncologist and surgeon told me) it can take a few months for your body to adjust and the side effects to settle. For me it was about the 3 month mark where life began to improve again. The sleeplessness is the hardest bit I think!

    I also had a lot of joint pain which affected my ability to exercise for a month or two. I wondered if that was affecting my sleep too! I tried lots of different things to see if they helped. I changed the time of day I took my tablet (from night to morning). I increased my magnesium supplement, did more yoga and meditation before bed. Reduced my coffee intake (I only had one small one a day, so I tried going without every second day!!)

    In the end I think it was just time that improved it! But at least I kept busy trying different things and sometimes got hopeful that I could feel a bit of an improvement for a few days.

    The hot flushes were worse for a while but they also improved a great deal at about the 3 month mark. My oncologist said that I could expect to keep improving for up to 6 months or more.

    I did ask about swapping back to Tamoxifen which was a lot less of a problem for me (I was on it for 2 years) but an aromatose inhibitor gives me better protection from recurrence. At the end of the day I figured the three months of disruption and reduced quality of life was much more preferable to getting a recurrence. I just looked at it as another part of my treatment and thank goodness it did settle! Maybe I was also fortunate that this did not occur straight after all my active treatment when I would have already been exhausted from all that.

    Wishing you all the best with it and hoping that it settles soon. Talking to my medical team helped me to persist, especially when my onc explained what typically seems to happen and what my choices were. Deanne xxx

     

  • I have not had them - still on chemo part of my therapy but my Gyno has warned me when hormona tablet time.comes I would have horrid hot flushes for a long time and has already told me there are ways of dealing with them.so that when the time.comes we will need to work closely together to combat it. But he said it is absolutely managable...

    If you have a good Gyno or Endocrinolpgist (my.Gybo is also a reproductive endocrinologist) talk to him / her as they can help with this.

    Jel.