Arimidex withdrawl

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Lorraine S
Lorraine S Member Posts: 3
edited May 2019 in General discussion
Hi everyone.  I've been on Armidex for about a year now and have been experiencing all sorts of problems with my hands so my medical oncologist has decided to take me off it for 6 weeks, record pain levels, how I feel and other things and then go back on for another 6 weeks, do the same thing and go back and see him.  Depending on the outcome will determine if I stay on the Arimidex or try it's cousin Aromasin for 3 months and then either stay on that or last outcome try Tamoxifen.

This test will also determine if it's possibly arthritic as well or if it's the tablets.

My question is how many have done this or had horrific pain in their hands and fingers when they've stopped taking this medication and what did you do to overcome it?  I've not taken Meloxicam for a week either and just relied solely on Panadol osteo however today my GP has suggested Voltaren 50's and Panadene forte where necessary.

Thanks in advance for responding.

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  • Emie
    Emie Member Posts: 27
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    Hi @LorraineS

    Yup I was on armidex and lost use of my right hand with trigger thumbs and fingers and I couldn’t do up zips, shoelaces etc. My Onc who is wonderful said this was totally unacceptable and swapped me to Tamoxifen (which can be done depends on your diagnosis I had ductal cancer).

    I had six weeks break (the extra 2 weeks was because I was having more surgery) and my hands got much better. I still had cortisone injected into two digits which really fixed the pain and discomfort. My right hand is stiff in the morning but the hand therapist got me to wear compression type gloves at night and that really helps - now it is stiff but quite bearable.

    So the upshot is my pain settled very quickly once I stopped taking the drugs and the cortisone and hand therapist really helped me. DM me if you want to know more
  • Lorraine S
    Lorraine S Member Posts: 3
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    Thank you for responding.  I was in a bit of discomfort before I stopped and it's just gotten worse.  I am hoping as it's only been a week that it settles quickly.  For now I guess, I just have to ride it out.  

    Tamoxifen is the last resort for me as it can be used pre and post menopausal. I'm not a fan of the potential side effects from it but everyone is different and drugs affect everyone differently.
  • Deanne
    Deanne Member Posts: 2,163
    edited May 2019
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    Hi @Lorraine S
    I was on Letrozole for 3 years before developing trigger thumbs and finger. My oncologist gave me a month break before swapping me to Tamoxifen (I was on Tamoxifen for 2 years before Letrozole). I found acupuncture seemed to help the pain. 

    I have no hand pain or stiffness on Tamoxifen 3 months later. The right thumb still triggers sometimes but I have full strength in it now. I could not even sign my name before I stopped Letrozole. I had other issues which made Tamoxifen the best choice for me. 
  • melclarity
    melclarity Member Posts: 3,521
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    Hi @LorraineS I have done this specifically in Feb 2017, I came off Arimidex and recorded it for 6 weeks. I had improvements within 2 weeks. I didn't have increased pain at all though, it only got better. I was then placed onto Aromasin, which I was told is pretty much the same but everyone reacts differently. To be honest? there's no difference on this, however Aromasin is a steroid based med and Ive had enough especially the weight gain is horrendous no matter what you do, Aromasin affects the LPL cells, which means it stores fat. uuugh!! so Ive been on AI's for 8 years now Tamoxifen to start but had a recurrence at 4yrs, so had to have chemo and then Arimidex. I am  now going to request Letrozole for my last 2 years or come off altogether.

    The constant pain is very difficult absolutely! I use panadol osteo on a bad day and it takes the edge off. I did find that for me the pain is a combination of an unnatural menopause, chemo induced, chemo and the AI. All of these combined cause the effects or exacerbate the AI. 

    Tamoxifen is very different and if you are pre menopausal which I was I had zero side effects on that, it just doesnt work in 1/3 of cases. 

    All the best hope you find a solution, unusual for the pain to increase so I'd investigate that! xx M
  • Lorraine S
    Lorraine S Member Posts: 3
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    @Deanne @melclarity Thank you ladies for your experiences.  I started Voltaren 50's on Wednesday and wow what a difference already and I've only taken 1 per day.  I combine it with panadol osteo during the day and if needed a panadene forte before bed. The pain has subsided immensely and my trigger happy little finger and thumb are not as bad either.  The swelling on my middle finger hasn't gone down a whole lot but it's not quite as sore.

    I guess I will take each day as it comes, some will be better than others as with all treatments.

    Thank you for your time, it's a relief to know this is normal.