Anastrazole/Arimidex pain in body

FormerMember
FormerMember
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Hi everyone, 

I've been on Tamoxifen for 3 years which was fine except it made a thickening on my womb so had to stop. Then followed by Leterazole which I couldn't tolerate at all because of the pain it gave me, and am now on Anastrazole and feel like an old lady. The pain in my body is excruciating.My legs are extremely stiff,  breast pain is awful, and I actually feel like I'm riddled with arthritis. I work as a Learning Support Assistant in Reception (4/5 yr olds) and this is affecting my job. I've come home this week not able to walk my dog and cried when I pushed myself to do it. I'm in bed every night by 7. I've been back to GP who says give it 2 months. I'm 2 weeks in and so down about it. I came off leterazole for 6 weeks and was like a spring chicken so going on Anastrazole now is like a shock to my system. I also suffer with Fybromyalgia so that's not helping either, if anything it's worse. Any suggestions would be appreciated. TIA xxxSusan x

  • Hi Susan

    I'm sorry to hear how difficult  you're finding being on anastrazole. I haven't taken this drug but I noticed that your post hadn't had any replies. This is probably because it has fallen off the first page before anyone who can help has seen it. By replying to you it will 'bump' your post back to the top of the page where it will be seen again.

    I'm also tagging one of this group's Community Champions into my reply as he may be able to offer you more help than I can.

    I have found this information for you and one of the common side effects of anastrazole is pain in your muscles and joints. It goes on to say to tell your doctor so that they can give you painkillers. It also says being physically active and keeping to a healthy weight can help with the pain.

    I hope you are able to get this sorted soon.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Morning Susan   

    Sorry your question somehow slipped through unreplied to Disappointed

    My wife was taking Letrozole for 5 years and tried Anastrozole early on for a couple of months but went back to letrozole.  All of these oestrogen stripping meds seem to have the same side effects feeling like you have aged 20 years is all so common.  Daresay this also being exagerrated by your Fybromyalgia as well.

    There is another tablet called Exemestane / Aromasin (link) that can be used - I think that type is steroid based but could be worth asking your GP about ?

    J was found to be osteopaenic after 2 years on Letrozole and was given Adcal+ vit D and Alendronic Acid tablet to help build up her calcium levels and for her joint aches / pains was placed on Meloxicam a NSAID (non steriodal anti inflammatory) and also Amitripltyline.

    It is tough mentally knowing you are taking these tablets to help ward off recurrence but for some the tablet regime is so hard to cope with they come off them and take their chances :-/   My wife had HER2+ positve bc with a higher risk of recurrence so bit the bullet and carried on until her 5 year sentence was over.

    You may well be on meds for your Fybro but do check out your options with your GP to get the best pain relief to get you through this tough time.

    Hope this is of some help, G n' J

  • Hi

    I'm on Anastrozole and the different brands of tablets can make a huge difference.  Apparently the coatings have different ingredients.  I guess the fybromyalgia isn't helping at all with symptoms, but it might be worth trying different brands to see if it helps you.

    I had a brand from my oncologist (can't remember what it was) and had that for 2 months, then I had Accord Brand.  Neither brand caused me any issues.  I get the odd ache and pain in my thumb and knee, but nothing that really makes any difference to me,  Then one month the pharmacy gave me a different brand.  Within 2 days I was in agony - every bone seemed to ache inside - and even if I touched them they seemed to hurt.  So after 2 days as I had some Accord left from a previous packet, I went back to Accord.  Within 2 days, I was right as rain.  So, I carried on with them for a few more days, switched back to the different brand - and boom! the next day I was in agony.  I wrote to my Doctor and asked him to put "Accord Brand Only" on my prescription slip.  He did this without question and I've been fine.  

    I take my tablet with a pint of squash first thing in the morning.  I don't think this makes too much difference as I did the same with the different brand, but just a bit of info.

    Worth trying to get your pharmacy to order in different brands each month and seeing if any make any difference to you.

    Some doctors deny that the brands make any difference, so you can just ask your pharmacy to get hold of different brands and if you find one that eases your symptoms then contact your doctor to get your prescription slip amended.

    Hope this helps,

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  • FormerMember
    FormerMember

    Hi - I found naproxen helps quite a lot with the joint pain. Perhaps you could speak to your doctor and see if you can try them,

    Good Luck

  • Hi All, trust me, been there, done that, got the t shirt, been on letrozole now for 5 years, and another 2 to go, at least its not 10,or 15 as that was the norm happening last year with oncology.  I HAVE to have the Accord brand only of letrozole, anything else is vile,, and im a cripple,,and after being on it for 3 yrs also, i actually got the the paper out of the box, and opened it up and realised you could wallpaper the lounge with it, it was that long, however,, on reading the ingredients and you dont need to read the tablet ingredients as this is all the same as its letrozole,, end of,,, however, the coatings/fillers that are used, are different with different brands and its the coatings and fillers that are used that cause individuals different levels of discomfort, pain, agony, and when i actually researched some of the E contents, the fillers etc contain different chemicals of what is used is plastic coatings, paint, and a whole shed load of other items,, so its no wonder people are in pain...and the only reason as ive been told they need to use fillers and coatings is to make the tablet big enough for us to take, otherwise it would be very very small,,,well id rather have small,, and none of that other crap going into my body,, especially when you are trying to keep chemicals out of the body going forward.  Also we also have to contend with sometimes the pharmacuetical companies deciding not to make the odd brand, leaving you at the chemist to collect it, saying they cant get that brand and would you like to try another,,, no bloody thank you, id rather go without,, however i have experienced this lack of brand issue, but have managed to get it eventually with the chemist i have moved to now.. And my GP has specified I must have that brand only.. I have also taken this issue of playing with peoples lives to my MP who in turn took it to the Medical head honcho, national england something or other,, however it didnt come to anything, got a letter saying they couldnt do much, which in my opinion is bollox, excuse my french, but after being mutilated, poisoned and then burnt to a crisp, to then have to suffer tablets that can hate you, I wasnt prepared to let it go without some sort of fight,, and unfortunately until we stop letting the pharmacutical companies control the meds and finances, and let the NHS sort it out, and control it, we are going to have to be in this rubbish scenario for everyone year in year out, forever until someone has the guts to kick the companies up their Arris!!!,,, Rant over,,but even now it makes my blood boil, just wish i could lose the 3 stone letrozole has given me....keep fighting ladies, and make a stand wherever you can, even when you are at your lowest,,, having a good cry at the pharmacist sometimes helps them get their act together..