Aromatase Inhibitors, Joint Pain, and Exercise

Posted on: December 17th, 2013 by
29

Aromatase Inhibitors (AIs) are medications for post-menopausal women with estrogen receptor positive breast cancer. AIs work by preventing hormones from being converted into estrogen, thereby hopefully reducing the risk of cancer recurrence.

AIs seem highly effective in helping reduce recurrence. The problem: AIs often have a side effect: joint pain, which prompts some women to stop taking the drug.

A recent study found that consistently exercising 150 minutes each week can significantly alleviate AI-related joint pain. The study was conducted on 121 women who rated their joint pain as mild or greater. Half of these subjects exercised 150 minutes a week for a year. The other half simply continued their normal activities.

The final result: those who exercised 150 minutes per week reported a lower joint pain score. The conclusion: exercise can lower AI-caused joint pain.

Exercise truly is excellent for the body on so many levels. And if it relieves any kind of pain, I’m all for it.

This study is a promising start, but I wonder – what about the women whose joint pain was so intense, it was crippling?

Were they included in the study?

And, even with exercise, how many of those with mild pain will develop severe pain anyway years later?

I know that not every woman experiences such intense joint pain, but for the women who do, I don’t think exercise is necessarily the panacea.

I know this firsthand.

I was on an AI during a very athletic period of my life. Even before I began taking this medication, my exercise regime lasted at least 150 minutes per week, oftentimes more. I swam, ran, and did weight training for years prior to taking the AI. When I started taking this medication, I was still following this exercise regimen and felt great.

About a year into treatment, I noticed mild joint pain, but I ignored it and kept exercising.

Even when the joint pain started increasing, I didn’t falter in my exercise regime. I endured for another year, even though the pain went from mild to severe. I was desperate not to stop taking the medication, knowing it could help reduce a cancer recurrence.

With great resolve, I committed to continue using this drug, no matter how I felt.

Within six months of this vow, I was in agony. I couldn’t even walk or drive without extreme joint pain. Every single movement was agony and whenever I could, I cocooned in my bed and sobbed.

I made a feeble attempt to at least swim, but all I could do was the Dead Man’s Float. Very apropos. I cried as I gingerly left the pool.

The pain crippled me. I became bed-bound.

My oncologist put me on a different AI. Unfortunately, there was still no relief.

He took me off AIs altogether, saying “These aren’t the right medications for you.” Eventually, my body recovered. I gradually increased my exercise regime. And I eventually returned to a minimum 150 minutes of exercise a week.

Am I happy I was taken off the AI? Well, no. Well, yes. I was disappointed, as I wanted to keep taking the medication to help prevent a recurrence. But the AI issue was a quality-of-life issue.

And with the AI, my life had no quality.

So I was greatly relieved when I stopped taking the medication.

I’m so glad the researchers in the aforementioned study addressed AI-related joint pain. It’s a start. The joint-pain problem is real, and if exercise can alleviate it, that is wonderful.

However, what about the women like me who take the AIs as directed, exercise, and experience excruciating pain anyway? I’m not so convinced exercise can help them.

When my oncologist first prescribed the AI, I asked about side effects. He said I might experience some joint pain.

I can understand why he didn’t share that the joint pain could become unbearable and crippling. If physicians said that for every AI handed out, nobody would take the medication.

To this day, I don’t blame my oncologist for not disclosing the worst-case joint-pain scenario with me. On the other hand, doctors should be forthright in discussing AIs and joint pain. A patient shouldn’t have to ask about side effects before an oncologist will have a heart-to-heart discussion about them.

I’m hoping that one day AI-caused joint pain can be kicked to the curb. And this day can’t come soon enough.

photo

What is your experience with AIs?

Did your doctor and you have an adequate discussion about side effects prior to treatment?

Do you have an exercise regimen?


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29 Responses to Aromatase Inhibitors, Joint Pain, and Exercise

  1. Elaine had this to say about that:

    It’s so important to unserstand these SE’s better. For some women they are debilitating, and for others, tolerable. I think it would be a worthwhile investigation. Unfortunately, these drugs are such a black box.

    • Beth L. Gainer had this to say about that:

      Elaine, I agree that the reaction to certain medications vary from woman to woman. And, yes, these drugs “are such a black box,” as you said so well.

  2. Scorchy had this to say about that:

    I take Letrozole and at times my left knee feels like it will fall away from my body at any moment. My MO gave me the exercise “line,” but the question was when I would be able to do that with the waning energy I have overall.

    My pain specialist prescribed 500mg of Naprosyn and that does help from time to time. But, regardless, there are times when I wake up in the middle of the night with intense knee pain.

    Like you did, I suck it up. It hasn’t completely blocked me from having a good quality of life. But on the other hand it isn’t always easy.

    • Beth L. Gainer had this to say about that:

      Scorchy, thank you for sharing your story. I’m so sorry you have such terrible knee pain. I think so many studies promoting exercise gloss over many issues, such as fatigue and draining pain.

      I hope your pain dissipates. xoxo

  3. Nancy's Point had this to say about that:

    Hi Beth,
    I relate. Boy do I! I experienced near-crippling pain in my feet, especially my toes, while on arimidex. Before starting it, I was used to walking a couple of miles a day. It got to the point where I was limping down the street and finally gave up walking altogether. I think we all know how important exercise is. The study you mentioned makes a very good case. However, sometimes it’s just not as simple as getting out there and doing your exercises. And if I’m correct, the women in this study also had access to coaches who were trained cancer coaches. As you know, I’ve written a post or two on AIs myself. At least there is more and more discussion going on about AIs, joint pain, tolerance levels, QOL issues etc. This post is a great addition to the discussion. Thank you so much!

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      I’m sorry about the horrible pain you felt in your feet. It’s understandable how this would prevent you from walking as a form of exercise. How can anyone exercise with horrific pain? Medical professionals need to address this.

      And I do remember your terrific posts on AIs. This is a very important topic, and I’m glad you covered them.

      Yes, the women in the study had trained coaches of some sort. I think the study is a good start, but it had several flaws in my opinion. Besides the fact that the women had coaches, they listed their pain as mild or greater. Well, how many had mild pain? Most of them? And 121 women isn’t a large sample size.

      It just seems like more information needs to be gathered. Thanks for your input, Nancy!

  4. Nancy's Point had this to say about that:

    I meant I gave up walking as a form of exercise. I did not give up walking altogether. Sorry. And I am slowly getting back at it after switching AIs and dealing with a few other issues…Thanks again for the post.

  5. EAK13 had this to say about that:

    Hi Beth
    I tried them all starting with Arimidex which I stayed for nearly 13 months then Femara and lastly can’t remember the name. I was told possibly joint pain but I was never told about such excrutiating pain you can barely move your are in such unfathomable agony I did exercise the whole nine yards. I was taking pain medication but that wasn’t a route I wanted to remain on. One day I said enough I stopped taking them My onc wasn’t happy I was in a bit of a panic asking myself if I did the right thing. I still have joint pain, it never fully goes away but I don’t regret my choice. I never experienced such pain and hope I never do again…. Love Alli xx

    • Beth L. Gainer had this to say about that:

      Alli, I’m sorry for all the suffering you’ve endured. The pain is unacceptable and excruciating. No one should be expected to live with this agony.

      I can understand why you discontinued the medication. I totally get what you’re saying about wondering if you did the right thing. I wonder that myself at times, although I know, that for me, discontinuing them was the right choice. I do wonder if this puts me at greater risk of recurrence.

      It seems like we are caught between a rock and a hard place.

      Thank you for your comment.

  6. Heidi Bright, MDiv had this to say about that:

    Do the AI’s cause inflammation in the joints? If so, can the inflammation be dealt with so one can continue on the AI’s?

    • Beth L. Gainer had this to say about that:

      Heidi,

      I don’t know if the AIs cause joint inflammation. That’s a great question. Somehow I feel that anti-inflammatory medication wouldn’t solve the problem.

  7. Kay had this to say about that:

    If one has osteoarthritis prior to breast cancer how can one know if increasing joint pain is due to AIs or to osteoarthritis. Still able to conduct daily activities but definitely having pain in new joints and joints which have been replaced. I also have had an unusual side effect…accelerated cataract growth. At least that is being corrected surgically.

    • Beth L. Gainer had this to say about that:

      Kay, that’s an excellent question. I would think it would be so difficult to tell whether the pain is due to the osteoarthritis or the AI. I’d recommend speaking with your doctors, although they might not know either. It’s so hard to tell, isn’t it?

      I’m glad your cataracts are being corrected. Take care of yourself.

  8. Elizabeth J. had this to say about that:

    I was not able to take arimedex at all, and extreme joint pain was only a part of it.
    I can tolerate femara, but my arthritis meds (yes, I already had arthritis) had to be doubled shortly after going on it. And I try exercise, but the fatigue I still deal after chemo and radiation (twice – recurrence was almost immediate) is still bad. Could it be the femara is preventing me somehow from getting past it or also causing more fatigue?
    They added faslodex injections, so how many symptoms are perhaps made worse from it? The side effect list looked like femara’s.
    Daily walking, like I used to do precancer, is out of the question due to neuropathy in my feet. I go to a gym several times a week, but cannot begin to exercise as long as women much older than me. If I try for too long, I end up in bed the most of rest of the day from exhaustion.

    • Beth L. Gainer had this to say about that:

      Elizabeth,

      I’m sure it’s difficult to tell whether the pain is from the AI, arthritis, or both. I’m sorry you had a recurrence. Fatigue is such a part of this whole darn thing, isn’t it? And it’s so very difficult, if not impossible, to exercise with so much going on, including the fatigue.

      I would talk to your doctor(s) about how you are feeling. Maybe there is something that can alleviate the pain somewhat.

      And I know the feeling of not being able to exercise as long as women who are much older than me. Since my DIEP surgery, I can’t exercise as well. I now swim mostly. If you can swim, that might be the way to go.

      • Elizabeth J. had this to say about that:

        Thank you. I did talk to the doctor about the pain. That was when they doubled my arthritis med to the maximum dose, and it has helped, but I still ache a lot more than I used to with just the arthritis.
        In regard to the fatigue, they tell me to just be patient. But, when they sent me copies of my disability medical reports, right there in the report was “extreme fatigue caused by past and current treatments,” so I am beginning to think this may just be life from now on. I refuse to call it the “new normal,” because it is nowhere near normal.

        • Beth L. Gainer had this to say about that:

          Elizabeth,

          It’s interesting that the report basically admitted that your fatigue was caused by treatments. It stinks that this is your life at this time. You raise a good point: why should we call our lives the “new normal”? It’s not normal.

  9. Eve Harris had this to say about that:

    Wouldn’t it be wonderful if we could *screen* for higher risk of worse SEs prior to therapy? I suspect I was at high risk for serious problems with the AIs but I stuck it out for 18 months until I, too, was bed bound. My personal cost/benefit analysis was to quit the meds. Your mileage may vary…

    • Beth L. Gainer had this to say about that:

      Hi Eve,

      I’m sorry you, too, were bed bound. That really stinks. I think it would be great to be able to screen for SEs before therapy. Everyone’s body and tolerances are different, which makes taking AIs (and any other medication) quite a crap shoot.

      As difficult as it is, sometimes quitting an AI is the right thing to do.

  10. jean macadam had this to say about that:

    I too am on Latrazole after breast cancer . It is my right knee that is effecter. It goes out of joint and had xray and bone scan showed hot spot but diagnosed arthritis . I have chiropractic care and take fish oil this helps

    • Beth L. Gainer had this to say about that:

      Jean,

      I’m sorry about your knee. It sounds very painful, but I’m so glad the treatments you are getting are working.

      Thank you for commenting.

  11. Renn had this to say about that:

    Hi Beth! I am a newbie when it comes to AI’s. I was on Tamoxifen for 2.5 years, took 2 months off, then started Femara on Nov. 1st. I feel SO much better than I did taking Tamox! That drug really messed me up. The last 3 months on it, I felt like I had a fever, high BP and rapid pulse, no energy, headaches, just felt overall awful. Not to mention hot flashes every 45 minutes. On Femara, I am still experiencing hot flashes but less often. (That side effect I have learned to deal/live with.) I feel more emotionally “normal” on this estrogen-blocking drug. I know that sounds weird. Maybe all that estrogen (what little was left) was affecting my mood more than I thought? I notice joint pain in the middle of the night, but so far (knock on wood) only then. I read the study you cited here and while they make mention of the importance of getting enough exercise, what I’d like to understand is exactly *how* exercise helps alleviate joint pain. I don’t get it. I know it’s early in my AI game, but right now I am OK with my bottle of Femara. (Famous last words, I know!)

    • Beth L. Gainer had this to say about that:

      Hi Renn,

      Thanks for commenting. I’m sorry you had such a horrible experience with Tamoxifen. The question you ask about how exercise helps alleviate joint pain is an excellent one. I would like to know that myself.

      I’m glad the Femara is better for you. Many women seem to have no/few side effects from AIs, but many others can’t handle the side effects. I’m hoping that things continue to go well for you!

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  13. Facing Cancer Together had this to say about that:

    Thanks for this post, Beth. I reckon I’ll be taking this type of medication in the new year, so it is helpful to hear about the exercise benefit, and your experience. It makes me realize buying a bicycle isn’t an frivolous expense come spring, it’s part of the health plan. So thank you! And thank you for the heads up, too. ~Catherine

    • Beth L. Gainer had this to say about that:

      Hi Catherine,

      Buying a bicycle is well-worth it. I like the way you put it: “it’s part of the health plan.” I’m sure you will be happy to be riding a bike, which is so much fun. Good luck with the AI come the New Year, and I hope you have a happy and healthy one!

  14. Mary Rose Moon had this to say about that:

    Joint pain is there, but the calf pain is the worst. I cannot even take the trash can down to the street and return without crying I hurt so bad. I am tired all the time and I am having trouble pressing down on the accelerator when I drive. There is deep ache in my leg and bones. I have been trying these AIs since Dec 2016 and it is now almost the end of July. Tried Letrozole and Aromasin. Taking a break right now, but I am not sure I can go back on them. Still have the leg and joint pain, but the fatigue has improved. ER and PR Positive, HER 2 Negative. 2 cm, encased, good margins, no nodes, O-Type 17, I am 61. Not sure I really want to continue. Quality of life is important too. I just can’t function on them. Weight gain of 20 lbs, can’t even begin to think of exercising again, when I can’t even walk down to my street or into the office from the parking lot. I was in good shape, former Army Officer. Don’t know what to do. Have to see the Oncologist next month to discuss going back on AI. Help?
    Mary Rose

    • Beth L. Gainer had this to say about that:

      Hi Mary Rose,

      I’m so sorry you are suffering so much. I truly know the feeling, and it’s awful to be so limited. The pain is why so many people stop treatment.

      Have you thought about calling your oncologist as soon as you can and telling him/her what you are experiencing? That’s what I did. Eventually, he told me on the phone the AIs weren’t working out for me. I’m not advocating going off them permanently; it’s your decision to make; hopefully your oncologist can weigh in on what he/she thinks.

      Definitely keep your doctor in the loop and make the phone call sooner than later. My motto is why wait a few weeks to discuss with a doctor what you could discuss now?

      I hope everything works out for you. Whatever decision you and your oncologist make, it will be an informed one.

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