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My doctor said her patients that take AI’s don't have pain after 2 months of being on an AI. I have been on it since Aug she also wouldn’t prescribe Ambien longer than 2 months so I’ll have insomnia again in a month. I feel like they lied to me, the oncologist who said we’ll do whatever we need to has started saying I leave that to the pcp. Or the Rheumatologist handles that. This feels hopeless at times. Ive dealt with RA pain and finally found relief just in time to start AI’s.
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Members rallied around a question about whether doctors are honest about aromatase inhibitor (AI) pain, with many sharing that their doctors... Read more
You're doctor is gaslighting you. Time to find a new one.
Time for a new doctor. I have been on the AI's since 8/2/2024 and still have the joint/muscle pain. It's a little better on the Anastrozole than the Letrozole, but still there.
My journey took me through four oncologists. My first at UCLA didn’t handle disagreement well, and the next two wouldn’t take my case—likely because there was no money to be made. But I’m so glad I kept looking because my new doctor at City of Hope is amazing. She told me, 'I don’t want to tell you what to do; I want to be your friend and help you make the decisions that feel right for you.'
Just remember that it is okay to advocate for yourself and seek a better fit if you need one. It made all the difference for me.
HUGS ♥️
No, my oncologist told me straight up what the side affects could be. They are not the same for everyone. I was provided information about possible side affects by both the doctor and the pharmacy. I see my oncologist every three months and always monitors my side affects. She has told me I could switch medications if I am not able to deal with Anastrozole. She is invested in my well being. Switch oncologist if yours is so unknowedgabe about what you are being prescribed. My PCP works together with my oncologist. Good luck. I hope and pray you are able to find some relief and professional standard of care. Sending positive thoughts! 🙏❤️
@A MyBCTeam Member
Hi MaryJo:
I went through what you are going through with my leg muscles giving out from Letrozole. I only took Letrozole for 2 1/4 years.
****I had to rebuild the leg muscles. Extremely important. I did this with seated exercises using a footstool. Leg lifts and leg stretches, etc. This doesn’t return unless you build up the muscle strength and structure again.
I think that if one has osteoarthritis already, the AI’s make it worse too and cause more osteoarthritis
AIMSS
(Aromatase Inhibitor Muscular Skeletal Syd)
The leg muscles giving away with no warning at all is extremely dangerous.
I had a lot of close calls but was always able to grab onto something and not fall.
It could be any of the leg muscles supporting each leg above and below and back or both legs at once.
Make sure that your Medical Oncologist is totally aware of what is happening. There are a few people that this happens to. The doctor should know this.
There are no easy answers.
Please keep us posted. I know that you have tried everything.
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