Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

@eljayem

I have been on anastrozole for 6 months and my most disturbing side effect is overwhelming fatigue. I was never this exhausted throughout chemo or radiation so my oncologist doesn’t believe it is related to any of the cancer treatment (bilateral mastectomy, chemo, rads, anastrozole). It slammed me three days after starting the anastrozole and I can’t overcome it despite PT, OT, Acupuncture, Psychotherapy, and naturopathic medicine. Oncologist refuses to believe it has anything to do with anastrozole therefore is unwilling to try something else.

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I was on two other meds before Aremedex and they both gave me horrible joint pain. Just like you explained,gives me also terrible fatigue that hits hard around 2 in the afternoon and by the time U get off work at my very easy office job I could just go straight home and go to bed for the night and skip supper every nite. But I have a husband who likes supper even though he makes it a lot because I am so tired and slow. I will keep taking the medication because I believe it will give me a better chance of staying cancer free.

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I just discovered this discussion group today. I was diagnosed with stage 1A breast cancer in July 2016. I have been off and on Anastrozole since January 2017. I have had serious hand pain in my right hand only. My ring finger is the worst, stiff and clicking. usually improves as the days goes on. About a week ago my right thumb suddenly started to ache and click when I flex it to the point where I have to take ibuprofen to be comfortable doing routine tasks like peeling potatoes. I have also had a lot of trouble with my eyes sticking shut while I’m sleeping and having to literally pry them open during the night when it wakes me up. Dry eyes the eye doctor told me and said I should use eye drops, etc. This is helping a little. I was switched to Exemestane for about two months and nothing improved. I went off everything for about 6 weeks this summer and the hand pain decreased but the eye problem did not. I have now been back on Anastrozole for about two months, and now the hand is getting even worse than it was before. Legs starting to hurt while sleeping. No hair thinning that I have noticed. Eyes the same. I have an appt. with oncologist i November and will evaluate going off the drug. Will this get better if I stay on for six months? I am afraid the hand pain is becoming permanent.

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I had extreme pain and depression on all the aromatase drugs and was unable to take them for any length of time so I can’t address those questions BUT, I do have a thought about your eye problem. For the past 10 years I have had ‘dry eye’. It started during perimenopause and continues today (although not as bad). I believe dry eye can be a result of lowered estrogen in the body and hormonal changes. I use prescription eye drops that help my eyes retain and make more tears (there are two, Restassis and Xiidra). They have helped me immensely with this problem which isn’t noticeable now, as long as I keep up with my meds. Perhaps a trip to your eye doctor for a ‘dry eye’ evaluation?

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@cindylb

I had extreme pain and depression on all the aromatase drugs and was unable to take them for any length of time so I can’t address those questions BUT, I do have a thought about your eye problem. For the past 10 years I have had ‘dry eye’. It started during perimenopause and continues today (although not as bad). I believe dry eye can be a result of lowered estrogen in the body and hormonal changes. I use prescription eye drops that help my eyes retain and make more tears (there are two, Restassis and Xiidra). They have helped me immensely with this problem which isn’t noticeable now, as long as I keep up with my meds. Perhaps a trip to your eye doctor for a ‘dry eye’ evaluation?

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I saw the eye doctor for this and she suggested Restasis. I guess I’ll try it although I hate to add any more prescription drugs to my daily regimen. Thanks for the info about falling estrogen causing dry eyes.

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The Restassis is pretty easy….a drop in each eye morning and night. You’ll be pleased with the improvement, I sure was. The only problem with this one is the cost. I pay $200 for a 30 day supply. But, you can get a savings card to sign up for a discount from your doctor (not good if you’re on Medicare though) and there is a second drug, Xiidra that may be cheaper. I may be switching to the Xiidra if my doctor will let me.

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@cindylb

The Restassis is pretty easy….a drop in each eye morning and night. You’ll be pleased with the improvement, I sure was. The only problem with this one is the cost. I pay $200 for a 30 day supply. But, you can get a savings card to sign up for a discount from your doctor (not good if you’re on Medicare though) and there is a second drug, Xiidra that may be cheaper. I may be switching to the Xiidra if my doctor will let me.

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I am on Medicare, but my insurance covers it to the tune of about $100 for a 90 day supply, I think. I’m going to call the doctor’s and see if they have any samples to try. They usually are pretty good about that.

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That’s good! Samples also good! I hope it works well for you. It has for me. At least it’s one less thing irritating you when there are plenty with cancer.

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@judymroz

I just discovered this discussion group today. I was diagnosed with stage 1A breast cancer in July 2016. I have been off and on Anastrozole since January 2017. I have had serious hand pain in my right hand only. My ring finger is the worst, stiff and clicking. usually improves as the days goes on. About a week ago my right thumb suddenly started to ache and click when I flex it to the point where I have to take ibuprofen to be comfortable doing routine tasks like peeling potatoes. I have also had a lot of trouble with my eyes sticking shut while I’m sleeping and having to literally pry them open during the night when it wakes me up. Dry eyes the eye doctor told me and said I should use eye drops, etc. This is helping a little. I was switched to Exemestane for about two months and nothing improved. I went off everything for about 6 weeks this summer and the hand pain decreased but the eye problem did not. I have now been back on Anastrozole for about two months, and now the hand is getting even worse than it was before. Legs starting to hurt while sleeping. No hair thinning that I have noticed. Eyes the same. I have an appt. with oncologist i November and will evaluate going off the drug. Will this get better if I stay on for six months? I am afraid the hand pain is becoming permanent.

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Judy,
I was on Anastrozole for 10 months and steadily grew challenged at the prospect of taking it for another 4 years, because of joint pain. It has now been several weeks that I’ve switched to Exemestane, having given myself a couple weeks break between the change in drugs. My joint pain is almost non-existent on Exemestane, although my tolerance for heat is greater, but overall, I’m feeling lots better. I am experiencing no problems with my eyes and feel like I am having more success having switched. This is all good news for me, at this point, because I cannot take Tamoxofin.
I’m hoping you will also be able to tolerate one of the estrogen inhibiters and wish you every success. Keep up the fight!!!

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My main issue is my stiff and aching fingers on my right hand only (so far). I have had one arthritic joint on my fore
Finger for years that doesn’t cause me much grief. About three weeks after starting anastrozole, my ring finger became stiff, started clicking, and really hurt. Stopped anastrozole for two weeks. No improvement. Started Exemestane. No improvement. Stopped meds altogether and fingers got better but issue was still there. Started Anastrozole again, and after about three weeks, my thumb joint seized up. Now I have three fingers on just the one hand hurting all the time. While I was off meds, I got sent to hand doctor. He decided I was getting carpal tunnel syndrome. When I asked about my finger, he said, “Oh that’s just arthritis.” I am beginning to think, at least with me, that Anastrozole can trigger a situation that has been simmering below the surface and then it’s hard to make it go away even when the drug is stopped. What was your experience with joint pain?

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@judymroz

I just discovered this discussion group today. I was diagnosed with stage 1A breast cancer in July 2016. I have been off and on Anastrozole since January 2017. I have had serious hand pain in my right hand only. My ring finger is the worst, stiff and clicking. usually improves as the days goes on. About a week ago my right thumb suddenly started to ache and click when I flex it to the point where I have to take ibuprofen to be comfortable doing routine tasks like peeling potatoes. I have also had a lot of trouble with my eyes sticking shut while I’m sleeping and having to literally pry them open during the night when it wakes me up. Dry eyes the eye doctor told me and said I should use eye drops, etc. This is helping a little. I was switched to Exemestane for about two months and nothing improved. I went off everything for about 6 weeks this summer and the hand pain decreased but the eye problem did not. I have now been back on Anastrozole for about two months, and now the hand is getting even worse than it was before. Legs starting to hurt while sleeping. No hair thinning that I have noticed. Eyes the same. I have an appt. with oncologist i November and will evaluate going off the drug. Will this get better if I stay on for six months? I am afraid the hand pain is becoming permanent.

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CORRECTION: ……my Intolerance to heat!

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I had to stop both Letrozole and Arimidex because of side effects….and yes I had that pain in my wrists and fingers immediately. But I only took the drugs a total of 2 weeks each. I had depression and fatigue and blood in my stools…..that final side effect was the end for me. I also got Shingles twice, once on each med. Of course they don’t cause Shingles but they seemed to mess with my immune system in some odd way. I did lots of research on the drugs because I wanted to take them but couldn’t figure out a way. Every single one causes the joint pain in some people and the side effect of pain can go away or stay. It’s taking away your hormones and they support things like joint and bone health. I suppose the pain could come naturally with aging and just be there waiting to pop up, the drugs may simply accelerate that. My experience has been, so far, no recurrence of my breast cancer and also that I have virtually no estrogen (per my recent blood tests). My body just got rid of the estrogen on it’s own ….I have no idea why or how, although I’ve been careful with diet, lost 25 pounds (that estrogen was hiding in my fat I guess) and I have many of the side effects the drugs would cause (due to estrogen depletion). I don’t have joint pain however and no depression (other than thinking about cancer, which is just depressing). I was only a Stage 1 but the tricky lobular (not ductal) cancer. It’s hard to spot when it does recur so I may be living in a ‘fools paradise’, but unless it comes back I’m not going to take the drugs and then, of course, it may be too late. I felt too horrible on the drugs (I also tried Tamoxifen with Stage 0 cancer) and had bad side effects. The drugs really do work to beat down the cancer and recurrence but they also have side effects short and long term. It’s a tough decision for many of us. You want to do all you can to manage the cancer of course but who wants to feel awful for 5 years doing it, with possible long term consequences. I struggle with my decision every day.

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I have a question for those of you who have taken Anastrozole and are now finished (or quit early due to side effects). Did you find the side effects went away after you stopped taking the medication? In particular, I’m questioning the weight gain, the hair thinning and the achy, stiff joints. I also get a shot of Prolia twice a year for osteoporosis so I don’t know if that will impact the results. I have been on the Anastrozole for twenty months.

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Happy New Year to all! I don’t know if I posted this yet but I was unable to take the meds due to side effects and this past August I had my 2 year checkup and my oncologist, at my request, checked my Estrogen levels via blood test. I was worried about my estrogen levels due to estrogen positive breast cancer and my inability to tolerate the meds….and I had virtually NO ESTROGEN. I do have many of the side effects the drugs would cause and found that interesting because I have not taken the drugs….I have hair loss, some achy joints, some weight gain, etc……those side effects (for me) were due to the lack of estrogen. I’m sure the drugs amplify that process. It’s something you might request of your doctor if you can’t take the drugs…a test to see where your hormone levels are?? I was very relieved and pleased to find that my hormone levels dropped on their own and that reduces my risk of recurrence somewhat…without the use of the meds.

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@leemiller

I’ve been taking anastrozole for almost a year, and am cautiously thinking the side effects have been minimal. My main concern is its contribution to my osteoporosis. I have been seeing an OT to learn how to increase bone mass.

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Did your doctor put you on a bone building drug?

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Of course, side effects are stated in the literature, but how you respond is to be seen. It was a very slow, sneaky drug that crept up on you and the symptoms truly began in the 3rd month. It is important to understand that you won’t know fully how they’ll impact you until you’ve been on the drug for 6 months, wherein you know how you’ll tolerate it. For the most part, I had difficulty with joint pain, particularly in my wrists and hands/fingers, including numbness and weakness. After 6 months, I transitioned to Aromasin for 6 months, experiencing the same side effects and have been off for almost 3 weeks. I will resume AI therapy and start Letrozole and hope to be able to tolerate it for 4 additional years.
I never experienced hair loss.
Afterthought: In the first 3 months of taking Anastrozole, I felt body pain, very old and fatigued. The joint pain persisted in my hands & wrists and the full- body pain wained, but the fatigue continued with either drug. I can now drink coffee without any struggle and have NO problems sleeping. Woo Hoo!!!!
Wishing you good health and every success!

Liked by Lexalaska

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