I feel like a cripple. Is it AI or risedronate?

Tajmari
Tajmari Member Posts: 19
edited November 2020 in Bone Health and Bone Loss

Hi. Two years ago, I had a mastectomy and was put on anastrozole and risedronate. I also had radiation, but no chemo. Over the past year I've had increasing pain in my knees, legs and feet. I complained twice in the last six months to my oncologist, but she pooh-poohed me both times. The first time, she told me to take vitamin D. (I've been taking it for years.) Next, she brushed my agonizing knee pain off as arthritis. True, I may have a little arthritis in my knees, but this is intermitent, screaming pain that makes me hobble instead of walk, interspersed with nonstop aching muscle and bone pain that can keep me awake at night. I have days with little pain and then days and days in endless, mood-destroying suffering. Anybody else have these symptoms with either of these meds? Anyone have any success reducing the pain? All suggestions welcome. I'm a ski coach, and the season is fast approaching. The way I feel now, I would need narcotics to make it through a day on the slopes. Thank you!

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  • flashlight
    flashlight Member Posts: 698
    edited November 2020

    Hi Tajmari, I'm not on anastrozole, but I had the same side effects when I started Tamoxifen. I have osteoporosis and in the past could not tolerate fosamax. Have you had a bone density done recently? What helped me was to take a tamoxifen holiday then to decrease my dose. Now, I am able to take the 20mg, but I split it into 2-doses. I have read where others take anastrozole every other day or switch to another med. My sister is on anastrozole and is getting some relief with a dose of claritin and will start reclast next month. I asked my MO to check my vit D level. 2-years ago it was low at 33, after taking Vitamin K2 with D3 it went up to 56. This year I changed my MO and it was the best decision.


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  • Tajmari
    Tajmari Member Posts: 19
    edited November 2020

    Flashlight, Thanks so much! What is an MO? I see an oncologist every quarter. I'm taking a vacation from anastrozole and risedronate for at least for a week. I need to know if the meds are causing my pain. I was supposed to have a bone density scan -- I've already had at least one -- and a blood test, but life is so stressed lately, I lost the paperwork for the blood draw, and I have no idea if I'm scheduled for the bone scan. I told my doc I didn't want to go to the hospital she put the order in for because they have an evil way of billing and slap patients with numerous, virtually incomprehensible charges after the fact. I cannot afford additional charges beyond basic copays. She wouldn't listen. Anyhow, I really appreciate your response. I will research reclast. Cheers! Melani

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  • flashlight
    flashlight Member Posts: 698
    edited November 2020

    Tajmari, MO is medical oncologist. They usually want you to go to the same place for the bone density test. In 2019 my MO gave me an order to get it done at the hospital and I didn't want to go through that hassle. I emailed my primary doctor and she gave me an order so I could go where I wanted. I know going to get blood drawn during Covid is a pain. Maybe consider getting another doctor? Best wishes!! They are predicting lots of snow this winter!!

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  • Tajmari
    Tajmari Member Posts: 19
    edited November 2020

    Thank you! I feel silly not knowing what an MO is. I’ve just been working so hard and dealing with not only cancer, but being an essential worker in this pandemic that I’ve been tuning out. I’m not in denial, but I’m carrying on. Anyhow, I’m going to call my MO and get set up for a bone scan somewhere. I’m still on vacation from anastrozole and I’ll skip my risedronate tomorrow. My legs still hurt. Greatly appreciate your kind responses!

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited November 2020

    tajmari - it is discouraging and irritating to have DR poo-poo SEs. AIs definitely affect the bones and contribute to arthritis. But so does aging. Did you have a bone scan before starting AIs to get a baseline. Weight bearing exercises are good for the bones, but do not stop osteoperosis/arthritis. I find the various threads on this site helpful for learning what others are experiencing what might help. I think turmeric helps me with joint issues. I take a GAIA supplement as well as adding it to my diet (with black pepper). Vitamin D seems to help as well, I found out my levels were on the low side of "normal" even though I was taking 1-2000 UI/day. Also using a plant based supplement for bones that someone suggested, "New Chapter Bone Strength". I've read that "too much" Calcium can cause heart issues for women, but I do not know what too much is.

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  • illimae
    illimae Member Posts: 5,710
    edited November 2020

    I had similar knee/joint pain on tamoxifen, felt like is was 100 years old. In addition to vitamin D for general use, Glucosamine was recommended and helped a lot for me.

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