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Extreme fatigue on Arimidex

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Ive been in Arimidex for a year and 3 months. I started out only taking it every other day as I was afraid if side effects. Until 2 months ago when my MO said he "hoped" it would work. Sigh. So I am now taking 5 instead of 4 days a week. Probably no difference in effect.

Since on Arimidex, I have had joint pain, particularly in hands. Had to get shots in hand, etc. But my fatigue level, which was bad before, is pretty severe now. Tried Wellbutrin last year. Nothing. Now on 5 days a week, it is awful! Asked PCP for something else for fatigue. She gave me short acting Adderall. It works for about 4 hours, but makes me feel strange.

The question is, does anyone have experience on Anastrazole and fatigue? Does anyone feel trying a switch my help? As it is, I'm going back to every other day.

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  • moderators
    moderators Posts: 8,279
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    Hi @hippmark,

    We're so sorry you're experiencing such intolerable side effects while on Arimidex. Have you talked to your doctor about trying a different aromatase inhibitor that might offer less (but maybe different) side effects?

    Also, you might find our content on Managing Fatigue helpful while you figure out next steps to find some relief.

    Thinking of you!

    —The Mods

  • maggiehopley
    maggiehopley Member Posts: 119
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    I am approaching my 1 year anniversary of taking anastrozole (generic Arimidex). I take it every day. I have joint pain in my knees and elbows- my job requires me to lift things a lot, so I am using my elbows probably more than most. I work part time and get home around 2. I'm fine at work but fall completely apart once I get home. I have to lay down and I don't get out of bed except to cook/eat dinner and try to exercise most days. The fatigue is way more than I was anticipating, but I am not willing- yet- to make a change. My fear of recurrence is too great.

  • hippmark
    hippmark Member Posts: 93
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    Thank you. I have had fatigue while on it, but it has suddenly moved to extreme fatigue. The timing for mine is that I was taking it every other day. Then moved to taking it 5 days a week instead of 4 and I went to the generic instead of the brand. Was that the problem?

    I just this week asked to be switched to Exemastane to see if that will help. I am currently on a 2 week break before I start. So we'll see. I just can't possibly live on Adderall to help for the rest of the time I'm on an AI.

  • blossom55
    blossom55 Member Posts: 2
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    Hi Hippmark- I can relate to everything you are saying, having been in Arimidex for 5 years . I finished therapy about 7years ago . Yes to fatigue, napping difficult and restless nights. I went to bed an hour earlier than usual. I tried playing with the time of administration but nothing really helped . The yes to awful joint pain- my knees and hands were shot . I alternated between ice and heat but mostly ice helped . My Onco tried switching me to other inhibitors but for me Arimidex was the least offensive . I also gained a lot of weight - water included . You are not alone in this - talk to your oncologist about trying different inhibitors . Keep talking and reaching out - we are all here for you . Betsy

  • pinkrules
    pinkrules Member Posts: 97
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    I will be going on the generic instead of brand. Is there a difference? Does brand have less side effects? I know generic is less expensive but I'm terrified of the side effects of Arimidex and do not want to be placed on more medication to help with the side effects. I'm even thinking of forgoing hormonal treatment and take my chances.

  • pinkrules
    pinkrules Member Posts: 97
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    I have another question. Instead of taking Arimidex or the generic every other day like you were doing, can a half dose be taken each day instead? Cut the pill in half? Has anyone done this? I'm going to talk to my cancer doctor about this. My appt is Friday.

  • hippmark
    hippmark Member Posts: 93
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    For some people, the brand seems to be a little better. I don't know if that was it or not. Brand is more expensive. I am told if you are doing every other day, it's best to take the entire pill instead of cutting it in half. But your Doctor will not want you to go on every other day. It was my choice. You may have no to little side effects. It's up to you.

  • pinkrules
    pinkrules Member Posts: 97
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    Thank you! This gives me some hope and options. I'll do more research and check with my insurance the price difference between brand and generic. I'm leaning toward brand but it depends on the cost. If you suspect maybe the extreme fatigue could possibly be caused by going from four days a week to five days, would you go back to four days (every other day)? Again, thank you!

  • hippmark
    hippmark Member Posts: 93
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    I'm trying Exemastane first. If those side effects are worse, my plan is to go back to Arimidex, every other day and back to brand. I'm just trying to find something that is tolerable.

  • pinkrules
    pinkrules Member Posts: 97
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    Please keep us updated! I found out Medicare insurance doesn't cover the Arimidex brand name. The generic is only $10 for 90 days.

  • pinkrules
    pinkrules Member Posts: 97
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    Another question. If

    Another question. Have you tried taking the generic anastrozole every other day? Are there with fewer side effects this way? Or just the brand Arimidex every other day? The brand is $2,000 a month CVS told me. My Medicare doesn't cover it.

  • hippmark
    hippmark Member Posts: 93
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    Pinkrules. No, I didn't try to take generic every other day. Honestly, don't think either would make any difference. You can get the brand at Eagle Pharmacy online for about $184 for 3 months.

    i took my break and have now started Exemastane. After the 2 week break, my fatigue level definitely improved. We'll see what Exemastane does.

  • pinkrules
    pinkrules Member Posts: 97
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    Hippmark, how are you doing on Exemastane? Thank you so much for the Eagle Pharmacy price on brand name Arimidex. $60 a month is doable, just have to budget for it. Cut costs in other areas. I actually talked to my oncologist about taking the brand name every other day because I'm terrified of the side effects, especially since I already have osteomalacia. Of course she was against it, I knew she would be. She even said it could lead to metastatic. I don't see how since, I believe, the drug stays in your body for days so skipping a day to lower side effects...I just don't see how it can lead to more cancer. I'm still doing research on this, haven't picked up the pills yet. If you have links, that would be so helpful!

  • pinkrules
    pinkrules Member Posts: 97
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    Also, I asked her my risks of the cancer coming back if I decided not to do the hormonal treatment. Because I went through the lumpectomy and radiation, my risks were lowered to 3.5% each year for a ten year period. 15%.

  • hippmark
    hippmark Member Posts: 93
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    I find that highly unprofessional for her to say every other day would lead to metastatic! The gall! She has no clue! Arimidex is said to have a half life of 48 hours! So you still have 1/2 in your body on day 2. These doctors want to scare the crap out of you! But don't care about the side effects? B.S.

    Do your own research. I did. Try it every day and see your side effects for yourself. If too bad, maybe switch to every other. If that's too much, switch to another. Or not. Your choice. Seems like you have a much lower risk than I do, so experiment if you want to. I'm not a professional, but I made my choices based on my own research and my own side effects.

    So far, Exemastane is much easier on my joints and I am back to regular fatigued instead of extreme fatigued. But, I am also on every other day to get my body used to it. I plan to increase to every day as Exemastane has a half life of 30 hours. Again, I'm experimenting. I have a life to live so I will not let a Doctor intimidate me. I was stage 2. Seems like you were DCIS. Much lower risk than I. Try it. See for yourself. Everyone has to do what they feel is right for them. I've also done some pretty big lifestyle changes that I believe will also help keep me in remission. I'm comfortable with the choices I've made so far.

  • pinkrules
    pinkrules Member Posts: 97
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    I love your strength! Thank you. I'm happy to hear so far you are doing okay on Exemastane. I have been considering not doing the hormonal treatment but may at least try it for a month or two. The side effects are frightening to me. I don't want to go menopausal again. I had bouts of anger, impatience during that time. I'm at a good place and want to live my life. I'll be 68 this month.

  • pinkrules
    pinkrules Member Posts: 97
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    I think I asked you this before. Does the brand name Arimidex have less side effects than the generic, have you heard in your research?

  • hippmark
    hippmark Member Posts: 93
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    I have to say that I really don't know. I was only on generic maybe 2 months. My fatigue got worse, but I have no idea if it was because of the generic or something else. There are some on here that for them, they think the brand has less SE. But everyone is different. Don't be afraid to try any AI! Some people have no or few SE! Just start it if you want. Don't be terrified of the stories on here. You have no idea until you try! Give it a whirl and see where you land with it!

  • brutersmom
    brutersmom Member Posts: 922
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    I exercise everyday. That helps with both fatigue and pain.

  • pinkrules
    pinkrules Member Posts: 97
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    You just gave me the push I needed! Thank you! I'm picking up the anastrozole prescription today and will start this afternoon. I'll give it a try. Oddly, there is no breast cancer in my family, no cancer genes in my DNA. The cancer did not show up on my annual mammogram or sonogram, only on a breast MRI. I do have dense breast tissue. I'm spreading the word that women with dense breast tissue should also get their doctor to prescribe an annual breast MRI. My co-pay was around $40.

  • hippmark
    hippmark Member Posts: 93
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    Good for you! Keep us posted.

  • pinkrules
    pinkrules Member Posts: 97
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    I lasted only one day on anastrozole. Side effects were awful, couldn't sleep (probably due to being nervous), had numbness on the right side of my face, graining feeling behind my eyes, already had pain in my shoulder and fingers. Unbelievable. I'm thinking allergic reaction. I'll try again after Thanksgiving before asking to switch to another AL. I want to have a nice time with family, some I haven't seen since the pandemic.

  • pinkrules
    pinkrules Member Posts: 97
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    Oh, and the fillers from the ZYDUS manufacturer are scary. I did some research and found out this:



  • pinkrules
    pinkrules Member Posts: 97
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    Hippmark, how are you doing on Exemastane so far? My oncologist wanted to put me on it because anastrozole was unbearable but I refused because of the stroke side effect listed. I had a TIA in 2013. I made a decision to not do the hormonal treatment and she agreed to keep monitoring me! I'm so thankful for that. But then I remembered you and how well you did on the brand name (Arimidex). So I'll give the treatment one more try. You mentioned Eagle Pharmacy. She is putting in a prescription to them for one month, $60. Are they a reputable company for brand names? They are out of Florida. An online company. Thanks!

  • hippmark
    hippmark Member Posts: 93
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    Please don't mistake I did well on brand name Arimidex. I possibly did better than generic, but I really don't know. I still had challenges. Nevertheless, Yes, Eagle Pharmacy is a very reputable company and out of Florida. Just follow up with them for the Rx.

    I am doing better on Exemestane. Joints are better and fatigue is about 40 percent better.

    Good luck!

  • pinkrules
    pinkrules Member Posts: 97
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    Thanks. I'm happy to hear you are doing better on Exemestane. I wonder why oncologists aren't prescribing exemestane first before anastrozole? It must be the cost. Anastrozole is less expensive.

  • maggiehopley
    maggiehopley Member Posts: 119
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    @pinkrules: thanks for posting the fillers for the Zydus anastrozole. That is the brand I am taking and I was curious about that. However, I researched all of those chemicals and they are very, very common additives in all sorts of household products, medicines, and processed foods. I believe I am getting much more of those in other things than the tiny amount that is in my anastrozole pill. I keep telling myself I need to switch to a whole foods diet but so far I have not been able to make that happen. I started my 2nd year in October. The first year my only side effects were joint pain in my knees and occasional stiffness, then suddenly at my one year anniversary I developed joint pain all over, constant stiffness, nausea, diarrhea, headaches, and mild depression. I switched from taking my pill in the morning to the evening and it has really helped with everything but the joint pain and stiffness.

  • pinkrules
    pinkrules Member Posts: 97
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    I have heard this before, after a year or a year and a half, side effects worsen. I'm wondering if it's because your pharmacy filled your prescription from another manufacturer?

  • hippmark
    hippmark Member Posts: 93
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    Pinkrules, Exemestane is not necessarily easier than Arimidex. Some people have many challenges on it. It's all individual. That's why you have to try a different one if you are having problems on one, try another. Some people have to "experiment." That's what I did.

  • pinkrules
    pinkrules Member Posts: 97
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    Hippmark, how did you schedule once every other day to remember what days to take it? Arimidex is on its way to me from Eagle Pharmacy and I'm going to start every other day for now. I'm thinking Sunday, Tuesday, Thursday, Saturday? What was your schedule? Thanks!