• Arimidex

    Asked by debsweb18 on Monday, July 30, 2012


    Has anyone been on Arimidex long term putting up with side effects?
    1. Do joint/bone pains eventually subside or do they get worse? Is it normal to have them, not have them for a while and them come back even worse?
    2. Do you take anything for joint pain?
    3. If your hair starts thinning, is it permanent?
    4. Does it make you tired?

    I started taking Arimidex in October and had no symptoms until February. I had morning stiffness and some periodic hip pain. When it got warmer, it seemed to go away. I thought it was the cold that made it worse. But then about 4-6 weeks ago, the morning stiffness seems to be worse and my hip or knee hurts at least once every day, but not all of the time. I only read recently about hair loss as a side effect and my hairdresser said I lost more than usual during the shampoo, but it's not bad yet. I didn't have chemo, so no hair loss before.

    11 Answers from the Community

    11 answers
    • nancyjac's Avatar

      Hi Deb. I have only been on anastrozole (the generic for Arimidex) for a month, so I can't answer your questions from personal experience as a long term user. But I did ask all of these questions of both my oncologist and other cancer survivors who have used Arimidex long term and am happy to share those answers with you.

      Some have suffered joint/bone pain, others have not. So started having pain almost immediately, other not until 3-

      about 8 years ago
    • nancyjac's Avatar

      Sorry, that is the second time this morning, my answer suddenly posted on it's own while I was still typing.

      .....others not until 3-6 months after starting treatment. According to my oncologist and those who do not have joint/bone pain, or successfully manage it, the best way to prevent or manage it is with weight bearing exercise such as walking. I walk an hour a day.

      I had osteoarthritis in one knee before starting anastrozole and was taking Aleve morning and night. My oncologist referred me to an orthopedist and he gave me a cortizone shot in that knee. That has made a world of difference and it is what allows me to walk and exercise regularly. Before the cortizone shot, I could only walk for 5-10 minutes before that knee just became too painful. Now I only take the Aleve occasionally as needed.

      I can't answer the hair question. I did have chemo and total hair loss from that. It has since been growing back and is still very short and appears to be about the same thickness as it was before, but it maybe too early for me to tell if it is the same or not.

      I don't think general fatigue is a side effect and I don't recall any user saying they suffered from fatigue and I have not myself. But then having recently had chemo and radiation, which do cause fatigue, by comparison to that, my energy levels are way better now than they use to be.

      I do have a little morning stiffness but it goes away once I have been up and about for a few minutes and I still get a little knee paint now an then, but I can't really blame either of those on the anastrozole, since I had that before I started taking it. Still, it might be worth while to see an orthopedist to check for osteoarthritis or other joint conditions. While they may not be curable these is a lot that can be done to make it manageable.

      about 8 years ago
    • attypatty's Avatar

      Dear debsweb18:
      I was on Arimidex for 3 months after I finished chemotherapy and had horrible side effects, but I was willing to put up with them rather than risk a recurrence of breast cancer. I had pain in all my joints - ankles, knees, hips, back, neck, elbows, wrists, hands. I developed "trigger fingers" in both hands. I had burning and tingling in my hands and feet almost all to the time. The joint pain was worse at night and when I woke in the morning. I was so stiff after sitting (like I have to do at my job - I work at a desk) for an hour or so that I could barely move. The pain started right away and neither got better or worse. It would vary during the day depending on what I was doing. I also felt the fatigue you describe - just feeling tired. I felt better after exercise, especially doing something fun like a Zumba tape, or just dancing to music, or working in the yard. The exercise made me feel less tired but I would pay for it later because the joint pain would become worse. I took Aleve at the beginning, but it really didn't help much so I would take it only at time sometimes if the pain interfered with sleep.
      I can't say my hair thinned because it is just starting to grow back from chemotherapy.
      At my three month check up, my onc took me off the Arimidex. She felt I shouldn't have to tolerate the side effects for 5 years - so she will start me on Aromasin after being off for a month. Funny thing, though, she was more concerned about the side effects than I was - I felt I could put up with them but she didn't want me to, thinking that I could do better on a different drug.
      I have been off for 2 1/2 weeks and so far the side effects have lessened somewhat. I no longer feel that fatigue. The joint pain is far less, although I am still stiff in the morning. The burning and tingling have stopped. My hands are still stiff and painful, with the trigger fingers still causing trouble. But I will be getting cortisone shots to help that.
      So bottom line, in my limited experience, the side effects do seem to subside when you quit the drug. But if the Arimidex is causing side effects that interfere with your enjoyment of life, you should talk to your oncologist. There are alternatives out there that might be better for you.
      Fight On,

      about 8 years ago
    • debsweb18's Avatar

      Thanks Nancy and Patty for your answers. I've had osteoarthritis for many years-mostly in my fingers and neck. My knees bothered me when I started exercising regularly several years ago so I wore knee braces. What I found is that osteoarthritis is more painful as it's developing and doesn't hurt very much later. My fingers and neck don't bother me near as much as they use to. In fact, the Arimidex doesn't seem to bother them at all! I was hoping the pain from Arimidex might work the same way. But probably no such luck.

      Patty-my symptoms are like yours, most joints ache at some time or another. I also sit at a desk all day and have trouble standing up after a while. Nancy, I wish I could exercise more. I get home at dinner time and then it's time to settle down for the evening. I'm not a morning person and I don't get enough sleep as it is, so getting up earlier won't help. I do try to do yoga and Dancing with the Stars on the WII for 40-60 minutes each weekend day. But like you Patti, it makes the joints hurt worse! I've got to get the knee braces out again and start exercising more!

      I do take glucosomine,but doesn't seem to help. I don't take anything else for it. I just don't think about it. I used to take Vioxx years ago before they took it off the market. It was great! But then any anti-inflammatories started giving me tongue sores. I just deal with the pain as it's not constant and I don't want to give up. There's only 3 drugs (I think) right now to take, and my MO said I will be on them for 7-8 years.

      I think my biggest concern is how do you know the difference between Arimidex side effects and bone mets?

      about 8 years ago
    • nancyjac's Avatar


      I really don't think there is any correlation between Arimidex side effects and bone mets. If you didn't have chemo, I'm assuming your breast cancer was an early stage and that there were no mets. If your primary treatment was surgery with or without radiation, and your pathology report showed clean margins, then your risk of developing mets at this point is slim to none.

      about 8 years ago
    • lynn1950's Avatar

      Hi. I have been taking Arimidex for almost 4 years. My SEs include joint pain (feet), thinning hair (luckily I have very thick hair), and fatigue. I tend not to take anything for joint pain except an NSAID occasionally. The joint pain has been pretty consistent. I wish I knew if the hair thinning is permanent. This question was asked previously on this site, but did not receive a response. As to the fatigue, try taking your Arimidex at night. That really helped me with the fatigue (and getting to sleep!). Don't give up. It is worth it. xoxoxox

      about 8 years ago
    • debsweb18's Avatar

      I do take it at night. I'm an uncurable (my thought-not docs) insomniac made worse by menopause and now Arimidex. I even take Lunesta and have trouble falling and staying asleep! That may be why I have fatigue :) Will be talking to my MO about this during my next visit.
      Nancy, I've heard the symptom of bone mets is bone pain. So I'm worried down the road I won't know because of the pain from Arimidex. My chances are low-my oncotype DX was 9, thus no chemo. I did have radiation since I had 1 very small tumor in 1 lymph node. I went through the last year really well, considering I went through treatment and 4 surgeries. I think I'm just going through the transition worry stage. Now that all of the treatments and surgeries are over and things have calmed down, I have more time to think of questions!

      Thanks for your help!

      about 8 years ago
    • nancyjac's Avatar

      A whole lot of other things would have to happen before you would experience bone pain from bone mets. And a whole lot of things can cause bone pain that aren't bone mets and aren't a side effect of Arimidex.

      about 8 years ago
    • SandiD's Avatar

      I had horrible pain while on Arimidex that started about 2 months after taking it. I also have severe osteoporosis & fibromyalgia. I was switched to Aromasin & it has been doable but my pain is starting to get much worse, feet, ankles, knees, elbows, lower back, hands & neck. Geeze! It is hard for me to tell what is Fibro & what is meds anymore. Mostly I just tolerate the pain. NSAIDS upset my stomach. I take Tramadol every morning. Exercise really helps a lot, but I have to force myself to get moving & walk like a very old lady at first! But I usually feel better once I get moving. Hot baths feel good too. Good luck to you!

      about 8 years ago
    • SLDND's Avatar

      I had hair thinning after a few years on Arimidex, but it went away when I went off Arimidex. The only other side effect I had was trigger finger on both of my thumbs. I had cortisone injections and it went away.

      about 8 years ago
    • jem1332's Avatar

      I have hip pain related to my AI (Anastrozole - generic Arimidex). First year, no side effects. Now I have hip pain and thinning hair. I take my pill in the morning. Didn't realize it could be taken at night. Do you have a preference?

      over 6 years ago

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