Just starting AI- Does the pain from AIs get better with time?

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crisw
crisw Member Posts: 14
edited August 2016 in Hormonal Therapy - Before, During, and After

I start exemestane today.

I'll admit- I'm terrified. I'm in the highest-risk group for getting bone/joint/muscle pain- I'm obese, had taxane chemo, have pre-existing arthralgia/carpal tunnel. So it's almost a certainty I'll experience pain. And all of the stories I've read about how terrible the AI experience is; how people were drugged up with opiates and still experienced no relief, only make the fear worse. Of course, people who managed to get through it are less likely to post!

The research that shows that there aren't any proven-effective options for dealing with the pain, that standard approaches like NSAIDs don't work, is very discouraging. But what I'm looking for now is data on whether the pain gets better with time. This seems contradictory; some sources say it plateaus at 6 months, some that it worsens with time.

For those of you who had pain but stuck it out- did the pain get better? How did you deal with it? I'm really not looking for any more scare stories of how awful it is- I already know that. But I am looking for reality. If the pain starts, will it get better or worse over time? If I tough it out, will it get better? Or if it's bad at the beginning, will it only get worse? If anyone can also point to research on this, it would be so much appreciated!

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  • Goodie16
    Goodie16 Member Posts: 446
    edited August 2016

    While I can't speak to if the pain gets better with time, have you approached your onc about supplements that can help? Tumeric, magnesium, boswellia, are just a few of the herbal supplements that you can take with your AIs to reduce bone/joint pain. My onc encouraged me to take those in addition to fish oil and Coqu10. It helps me manage the pain with only an occasional motrin.

    Best of luck!

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited August 2016

    just because you think you might get side effects doesn't mean you will. Knock on wood, but so far I haven't had any. I do take Vitamin D with calcium and magnesium, Omega 3 and Vitamin E. I don't eat grains, sugar or dairy - all things that cause inflammation. I always mean to have a cup of bone broth every day, but somehow don't seem to get around to it very often.

    Read the thread for whichever AI you are prescribed. People will recommend one mfg over another because of fillers that might be causing some side effects

    If for some reason you are in the minority of people who have major side effects, tell your MO. They can try all the different types to find the one best suited for you

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