Trigger Thumb/Painful Thumb with Aromasin

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ElsaJ
ElsaJ Member Posts: 16

I was diagnosed with ADH last year and my oncologist put me on Tamoxifen. Since I lacked the CP2D6 enzyme, she changed my medication to Aromasin in March once my blood test confirmed that I am post-menopause (I am 52 years old). I have since developed trigger thumb - very painful on both thumbs, unable/painful to bend, and have the popping, clicking feel whenever I tried to bend my thumbs. Could this be a side effect of Aromasin? I understand that joint pain is a common side effect, but not sure about trigger/painful thumb. Anyone has similar experience? I am seriously thinking about not taking any more medication as I can't live my life like this. Any advice will be greatly appreciated.

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2019

    Oh yes, letrozole was the culprit for me but this side effect also affected another musician friend so it is not uncommon. I was referred to a hand surgeon who injected a steroid and got relief however had to discontinue aromatase inhibition due to other reasons. Hope you can get resolution soon!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2019

    I experienced trigger thumb on letrozole and did get some relief from wrapping with training tape which allowed bending, but not enough to cause the joint to pop or lock up. A link to what I used below, easily found and inexpensive. I cut it longwise to just cover the joint and used a length long enough to wrap a couple of times around the thumb but not so thick or tight so it impaired circulation. I mentioned this to my oncologist and he switched me to anastrazole and the problem resolved over time and I had no additional issues for about 18 months. After that time I did have a ring finger trigger, one ankle, and several toes. I switched back to letrozole, but a different brand with fewer fillers and additives. No further problems. You can check medication ingredients with the link below, and may find success with a brand that has less of those inactive ingredients

    https://www.amazon.com/Cohesive-Adherent-Adhesive-Flexible-Breathable/dp/B07PFMQ8L5

    https://dailymed.nlm.nih.gov/dailymed/index.cfm

  • marijen
    marijen Member Posts: 3,731
    edited June 2019

    Yes anti-hormonal can cause trigger fingers, trigger thumbs, and carpel tunnel. I had for six minths, both thumbs. Then it went away. Bought two thumb splints at Walmart, also at Amazon, and an electric can-opener.


    https://trueremedies.com/home-remedies-for-trigger...


  • ksusan
    ksusan Member Posts: 4,505
    edited June 2019

    Yup, I have trigger thumb from Tamoxifen.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited June 2019

    Yep, me too. PCP did a cortisone injection, never had any more problems with it.

  • KimE
    KimE Member Posts: 53
    edited June 2019

    I'm on Aromasin and have the same issues with my thumb. I ended up getting a cortisone shot in my thumb and it helped but now the pain is back so I think I need another shot.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    I had trigger finger, very rarely now I have been off for 3 years

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited July 2019

    I'm getting this now too. Both thumbs, but my right/cancer side is worse.

    Thank you to SpecialK for posting that link.

    Does anyone know if these issues resolve when we finish the AI? Or does it become a permanent problem?

  • tlgio17
    tlgio17 Member Posts: 191
    edited July 2019

    Hi ladies,.....Following, I developed pain and trigger finger (middle finger) on my cancer side on Aromasin. My MO just switched me to Letrozole, however so far my hand is the same. I had one cortisone shot already which helps temporarily. Just wondering if this will go away or its permanent.

    Thanks,

    Traci


  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2019

    Well my trigger finger seems to be gone. Been off AI drugs for years.

  • ElsaJ
    ElsaJ Member Posts: 16
    edited August 2019

    Want to do a follow up. I have been off of Aromasin since mid June as I could no longer handle it due to the painful thumbs/trigger thumbs and all of the joint pains that came with it. My condition has not improved - both thumbs are still very painful, and my body aches with joint pains. I am wondering if the damage is permanent or do I have hope that I will improve. I am too young to be so crippled with pain. Also, for those that got a cortisone shots, do you get it from your MO? PCP? Hand Surgeons? PRM (Physical & Rehabilitation Medicine) doctors? I wonder who i need to call to get an appointment.

  • Blessedteacher37
    Blessedteacher37 Member Posts: 314
    edited August 2019

    HI,Elsa...

    I took Arimidex for a year and had a trigger thumb develop on my left hand. I had surgery as a teenager for one on my other hand,but never had issues with the left until the AI. I also experienced an acceleration in existing arthritis in my other joints. My oncologist agreed to let me go off the AI, and within 6-8 weeks the trigger thumb had gone away, along with some of my other joint issues. Wearing a thumb splint at night really helped mine and I wore it off and on after I went off the AI.

    Hoping this helps..My oncologist put me back on Tamoxifen to finish out my five years.

    Good luck!

    Blessed Teacher 37

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2019

    Elsa, I'm in a similar situation. My MO said to stop Aromasin, let my hands heal, and then we'll try Letrozole. I'm willing to give Letrozole a try, but I'm expect it will cause the same problem.

    It's been about a month since stopping Aromasin and my hands have improved, but they are still not normal. My MO referred me to the hand clinic and we'll see about cortisone shots and such.

    My MO said that often when this happens they'd consider a switch to Tamoxifen. One day at a time.

  • ElsaJ
    ElsaJ Member Posts: 16
    edited August 2019

    @blessedteacher37 and @buttonsmachine, many thanks for the response, I appreciate it. I have stopped taking Aromasin for about 8 weeks now, but the condition with my thumbs has not improved. Quite the contrary, it has worsen. When I stopped in June, it was mostly my right thumb, but now both my right & left thumbs have issues. I have tried ibuprofen for several weeks, splint, hand exercise, etc. and nothing helps. I will see if I can find a hand surgeon to consult with. I cannot take Tamoxifen since I lacked the CYP2D6 enzyme to metabolize it.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2019

    Elsa: I was hormone negative so never took any of these drugs. However I had left trigger thumb when I was just starting chemo. You're right, the pain is awful. I went to an orthopedic hand surgeon. They can do surgery, but we tried steroid shots first. I had 4 shots over the course of a year in 2013 and have never had any more problems. When the right thumb started triggering a year later, I went back and there was not even a discussion of surgery. Just two rounds of cortisone shots and voila. Hope you can find a hand surgeon who understands.

  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2019

    Definitely orthopedic surgeon for cortisone shots...get a hand specialist!

    Hope you feel better. I get many aches from tamoxifen, but it moves around. I never know from one day to the next which body part is going to act the fool. Right now it's my ankle hurting for no reason. That started a few minutes ago.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2019

    Elsa, you and I are learning about this problem together, unfortunately!

    I've been off Aromasin for over five weeks and my hands aren't better enough to start Letrozole yet. Strangely, this week my hands even seemed to get worse! On top of that, I've had trouble getting into the hand clinic (I guess they are very busy?), so that is also delaying things. Tamoxifen is also out for me, because I had a local recurrence while on it.

    This is definitely discouraging for me. We need better treatments. Anyway, please keep us posted on how things are going for you.

  • ElsaJ
    ElsaJ Member Posts: 16
    edited August 2019

    @buttonsmachine, very well said - we definitely need better treatments. The level of joint pain and SE that we are experience is not really acceptable. I went to the hand surgeon this morning, and she gave me two steroid shots (one to each thumb). She said it is 50/50 that it will work. If I don't see improvement in a month (she said it usually takes a few days but can take up to 3 weeks for it to work), then we go to surgery. She said it is a minor out-patient surgery, and the surgery will be a cure. Have you been able to get into the hand clinic yet? Any progress on your hands?

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2019

    Hi Elsa, I hope the injections help you! Please keep us posted on how you're doing.

    I did get into the hand clinic, and they offered me either a cortisone injection, or they said I could try a splint for a few weeks first. I chose to try splinting first, but a cortisone injection will be the next step if that doesn't work. My Dr said the same thing yours did - that steroid injections have a 50/50 cure rate for this, and that down the road there are surgical options too, but I hope it doesn't come to that.

    I've been off Aromasin for over 6 weeks and my hands are better overall. My fingers are normal, and my left thumb is better, but my right thumb is still a mess. I hope it heals, and that no permanent damage was done. I'm still really discouraged that the Aromasin caused such big problems - I just hope Letrozole is better for me.

    Also, has anyone with lymphedema had a cortisone injection in their affected side? I'd like to hear other's experiences with that too.

  • its_real
    its_real Member Posts: 23
    edited September 2019

    Wow sooo glad I came back to this site. I started Anastrazole in May and had my first bout of trigger thumb a few days ago - I could not believe the pain. I was so healthy before bc that I am apt to forget what my body is still going thru - meds and recovery from chemo/surgery/radiation - my normal response to the increased joint pains have been oh my body is getting old :) and it is so nothing to see here. I have also had ridiculous mood swings and I never thought to attribute them to the meds . . . thank you all for sharing your experience!

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    I had a trigger finger, after discontinuing AI drugs it was rarely an issue.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2019

    Elsa & Button: My orthopedic hand surgeon gave me a cortisone injection because I was just starting neo-adjucant chemo and refused surgery. If you research it some, one shot often does not do the trick. I ended up having 4 over a period of a year. That was in 2013 and I have not had a bit of trouble since then. Often combined with PT if it's a neck or back that's being treated, but usually requires at least two or three shots.

  • akmom
    akmom Member Posts: 272
    edited September 2019

    I developed trigger thumb on my left hand and my right ring finger after several months on Letrozole. My GP has referred me to a hand surgeon for possible cortisone treatment. While waiting for the appointment the symptoms have eased up (kept playing my guitar through the pain, maybe that helped!) Now the thumb is okay but ring finger problem is back. For a while I had severe pain in joints of both hands - that also comes and goes,

    My appointment with the hand surgeon is this week, not sure what to tell him! I don't see the point of the cortisone shots if the pain is going to come and go regardless (and I hear the shots can be painful)!

    Those who have had the shots, can you tell me if I will be able to use my hands as usual right away? Wondering if I will be able to play guitar the next day...

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2019

    I did not find the shots painful. My orthopedic surgeon uses a spray to freeze the site before injecting the steroid. It takes a couple of hours to wear off, but I don't remember every having a delay in using my hands as soon as that numbness wears off. However again, the first shot didn't "cure" the problem so I was scheduled for a series a month or two apart.

  • akmom
    akmom Member Posts: 272
    edited September 2019

    Thanks MinusTwo, good to know

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2019

    To anyone who is interested - I did some research on this myself, and it seems that this problem with Aromatase Inhibitors has been recognized only recently, so the research is still ongoing. However, what I read here gave me a newfound fear/respect for this problem:

    2007: https://academic.oup.com/rheumatology/article/46/10/1619/1790168

    2012: https://www.hindawi.com/journals/crim/2012/810428/

    2018: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6120376/

    In short, some people can modify things and get through AI treatment. Others really cannot continue AIs without becoming totally debilitated. For me the main takeaway is: proceed with caution.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2019

    Good info Button. My trigger thumb was not caused by Aromatase inhibitors since I am/was hormone negative, so my experience is not exactly relevant. In fact, the problem came up before I had any chemo at all.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2019

    Thanks for your input MinusTwo - it's helpful to hear your experiences with the cortisone shots anyway, since many of us will be getting those to treat this problem. I'm glad it got better for you!

  • akmom
    akmom Member Posts: 272
    edited September 2019

    Saw an orthopaedic (hand) surgeon today for my trigger finger and thumb. He said this condition does tend to flare and subside, so I decided to leave it for now and will get back to him for a cortisone shot if it flares again. I also had an occurrence before starting the AI, and assumed it had flared up due to the medication, but I guess there is no way of knowing for sure

  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited September 2019

    I’m right here with you guys. Trigger ring finger on my cancer lymphedema side. Waiting for am appointment with a hand surgeon. Hopefully the shit won’t be painful.

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