For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Butterfly1234
I started Tuesday, 4 April.
Coach Vicky
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natsera: my MO told me that I would feel the SEs within 2-3 weeks. I did have a few start at around 2 weeks (I know some people have felt them earlier), but the SEs really started around 2 months...and don't seem to have gotten much worse since then (so far).
ETA: I am also on Zoladex and pre-menopausal, so if anyone reading this is post-menopausal, the symptoms may start faster than mine did.
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Natsera, it took many months for me. Except the weight gain. That started right away.
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Thanks for your responses, Jennie and Gene. That was what I wanted to know. I only just started on Anastrozole last Thursday so it's only been 4 days. I'm not thinking I'll have much in the way of hot flashes because I didn't have a terrible time during menopause itself, and I'm about 20 years out.
However the bone and joint issues concern me. I already have osteopenia in my hips and don't want any broken bones!And it's complicated by the fact that I have diabetes and balance problems. I know my MO wants me to have a DEXA scan and she says it's treatable so I'm trying not to worry.
Then there is the issue of weight gain. I really don't want to gain any weight because it interferes with my diabetes control but I really don't know what to do. They always say diet and exercise, but those are not really very effective. I'm not currently terribly big, but I can't afford to GET big. No insult intended toward large ladies, but I have too much on my plate, so to speak!
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I'm T2, and haven't noticed any difference with my a1c in the almost 5 years I've been on this. I had a DEXA at the start, was beginning oesteopenia. Now in full blown osteoporosis. PCP wrote rx for Fosomax. The se from that scared me so much I won't take it. And I don't scare easy.
I'm going to ask my MO if I can stop this. I just may anyway if he says no.
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natsera--I started on anastrozole on March 25 which was the day after I finished radiation (before radiation 20 weeks of chemo). I was so nervous about taking a hormone blocker. I made it through chemo and radiation with no terrible side effects and I thought surely the anastrazole would be the thing to cause me problems. It's been 4 weeks now and I have had nothing. No pain, no hot flashes, nothing at all. As for weight gain that has happened somewhat for me, unfortunately. But I'm guessing it has more to do with the fact that I'm feeling well and able to eat normal again, rather than the anastrazole. The stress of this diagnosis and not much appetite through treatment caused me to lose 50 lbs which I was thrilled about. I just don't want to gain it back. As I get my strength and stamina back I am trying to get into an exercise routine. I spent all day on Saturday working in the yard. I figured that would be great exercise but I'm paying the price the last couple days. I'm so stiff and sore and tired I can barely move. I guess going from not doing much for 8 months to 9 hours of physical labor was jumping into it too quick. LOL!
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natsera, I started in October of 2015. Initially I had some hot flashes but they passed. My issues came on gradually. I am on a drug vacation right now.
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I started anastrozole March 19, 2016; didn't even realize it's been over a year. No real SE's; have those dreaded hot flashes once in a while but not much else.
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I have been on Anastrozole for almost three years. I have an occasional mild hot flash and some joint pain. I'm not sure that the joint pain wouldn't have happened anyway with aging. Daily Claritin seems to help some.
As far as weight gain goes I weigh a bit less than I did when I started it. I need to lose more, and it's a very slow process. I'm doing it by making small changes. I'm not sure if I can blame that on the Anastrozole or if it's (once again) just a part of aging. I guess I won't know until I stop the medication in two years. I feel sure that the hot flashes will stop at that point. I HOPE that the joint pain will improve, and it will be easier to lose/maintain weight.
Edited to add: When I started Anastrozole I had mild osteopenia; three years later it is slightly worse but still in the osteopenia category. I'm about to have my third annual Reclast infusion.
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For those of you on Arimidex with few side effects are you on name brand? If not, and on generic anastrozole, which manufacturer? I'm starting soon,
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I am grappling with emotional/psychological SEs of Arimidex and Aromasin. I had absolute meltdown 6 months after starting to take Arimidex, and stopped it. I agreed with MO that I needed to feel better again before retrying with different AI, and that was six months later. On March 25 of this year, I started Aromasin, (after having visited a psychiatrist and been given antidepressants and anti-anxiety meds). Now, on April 17, I am starting to feel mood swings come on again/emotional lability. By turns, I am sad and weepy, depressed, afraid, listless, unmotivated, etc.
When this all started last fall, I couldn't go to work for weeks or follow a recipe...and was too afraid to walk the dog or drive the car. I didn't want to be at home alone. I felt proud of myself if I got out of bed, bathed, and was able to heat some soup up in a pot. I lost more than 20 pounds due to severe anxiety and was literally choking my food down. I couldn't even read a book. When I did return to my part-time work, I tried to avoid interacting with others so they wouldn't see how odd I felt.
Back to the cancer itself: my tumor was low grade and very small -- 2mm -- and I was node negative. I was told tissue sample was too small for Oncotype test, and that "this is a good problem to have."
My MO has told me that the absolute benefit of anti-hormonals for me would be small (for example, they would reduce distant recurrence risk from 8 percent to 5 percent, or 6 percent to 3 percent). But, as I understand it, the "index" cancer is not all there is to consider: I also have LCIS, which heightens both-sides risk. And even though BRCA negative, I have family history of BC.
I want to do everything possible to prevent recurrence or new cancer, but I don't want to be unpredictably depressed, anxious or unable to function.
My psychiatrist is upping dosages of meds now that she knows I'm re-experiencing distress. Don't know what to do: keep on this path and see what happens; switch to the third AI, Femara? Ask to try Tamoxifen (I could never tolerate birth control pills)? Ask psychiatrist to change those meds (I have seen a number of ladies here say Effexor worked for them). Or stop the anti-hormonals altogether, take good care of my body, and pray for the best/accept what comes?
I am so grateful for the good medical care that so many of us in our country can access. But I feel like a mop through a wringer....I want to get to my "new normal" and stay there, rather than having all this tumult continue. Who WOULDN'T be afraid of pills that had rendered them nonfunctional the first time? The aftermath of my active treatment has turned into such an ordeal, and one that -- with my personality -- I blame myself for not "managing" better.
Ladies, thanks for letting me vent. So glad that most here don't seem to be having these problems. Is there anyone here who couldn't tolerate an AI and found a solution?
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Girl53 - I can relate to much of what you're experiencing. Have you considered a different Arimidex manufacturer? I'm going to look into this for myself, since the SEs are really starting to cause some problems. I know several other BCO members have had success with the same medication from a different company.
Speaking of SEs: Does the joint/muscle pain get better at some point? I am willing to fight through this for as long as I can, but I have exactly enough energy/resilience to go to work and to the gym and that's all I've got. I am determined to be healthy and active and maintain my gym schedule but the pain is so bad I end up in tears most days. This is compounded by pre-existing joint problems that just seem 10x worse than they were before. I feel I am doing a reasonable amount of exercise and have altered my fitness plan to be as low-impact as possible while still being high-intensity.
Also: I am having 10-25 hot flashes a day (on average) during the waking hours and an unknown (but far too high) number while I'm asleep. I feel like I only actually sleep for 30-60 minutes at a time. Does this seem like a high number? Low number? I thankfully have an endless supply of dry ice at work and a mini-fan at my desk...but it seems like I spend half my time searching for a cool breeze.
As always: thank you for letting me vent and thank you in advance for any feedback you can provide.
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My MO told me to take 1200 mg calcium and 5000 vit D3 to help with joint pain. It worked for 5 years.
Effexor is helpful in decreasing hot flashes. Call your MO for rx.
A lot of us use the Teva generic.
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Glow: Thanks for responding. To answer your question first, my joint stiffness/pain (mostly in hands and feet) had gotten a lot better at six months out...just when I went "cuckoo..." Hope yours clears up, too.
For me, at this point, the joint pain I had was like a cake walk compared to the emotional SEs. As you mentioned, I have heard some others here say they switched drug manufacturers of same med and didn't get same (bad) side effects. I asked my MO about this, and she wasn't aware of it. Have appointment tomorrow and will ask again.
At this point, I am terrified of these drugs. Maybe my thus-far nontolerance of them has something to do with my childhood trauma history, which I'm sure predisposes me to mood problems. I want to get the extra protection that anti-hormonals provide, but I can't do it at the expense of my ability to function or enjoy anything. I am stumped.
Is there anyone here who couldn't tolerate AIs and successfully switched to Tamoxifen?
Thanks again, Glow. Good luck with everything.
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Hi Girl53, I hear what you are saying. I did 13-14 months of Teva. It sucked all the joy out of my life. I slept 2 hours a night. I work full time (I am self employed) I have been off AL's for 3 weeks now. One of my co workers who knew what was going on told me this week she was glad to have me back. My husband said I was a mess but sadly no one would say anything to me because I was over reacting in a not to nice way. It was when I started shaking inside and began to think about not want to live anymore that I stopped the drug. I, like you, could not tolerate birth control pills in my younger days. My current MO and MD are not big on antidepressants or sleep aids for my symptoms. My first MO made a big deal out of chemo and ALS. I fired him after 3 visits but he has left me scared to not do something. My second opinion Dr felt the overall benefits of chemo were minimal compared to the side effects but was an option because my cancer was grade 3. He felt ALs would be enough. I went to a new MO last year he is more laid back. He told me continuing on ALS or try tamoxifen was my option. Now I don't know how I feel about anything because of my bodies response to the AL's. I am on a self imposed 3 month break and trying to sort through where I have been and what to do next. I feel my body and mind need time to heal. I am concerned about a recurrence or it showing up somewhere else later but I have been told be several Dr.'s that that could happen no matter what route I go. I come from a family that tends to live to be in there mid 90's so who knows what to think.
My next goal is to get back to exercising. I had to stop last fall due to lack of sleep. I need to get back on track. I feel better the days I do now that I am off AL's but I am not consistent.
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Brutersmom: Thanks so much for your note. Are you feeling better off the AIs after three weeks?
Our situations sound somewhat similar. I, too, felt the joy was sucked out of my life, I was anxious and withdrawn, couldn't focus on anything, had tremors, and at times felt not suicidal but that "being checked out" could feel like a relief. This was very scary to me. I DO want to be here....I just don't want to feel like I felt.
Your idea sounds great: Give yourself some time to heal and get going on that exercise.
I know what you mean about feeling left scared to "not do something." I read on another thread that prescribing these meds is the standard of care, and docs feel they must do it. And also, they don't want to sued by someone who tells them she wasn't warned that BC could come back if she didn't take pills. When in fact, it can come back even after the patient has done everything possible to prevent it. I have one neighbor who had mastectomy, radiation, chemo, and Arimidex for her BC, and it came back seven years out. I have another neighbor, 83 years old, who had first BC 27 years ago and took Tamoxifen for five years; and then a couple of years ago she developed a second cancer and is now on exemestane.
Good luck with everything, and let's stay in touch.
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I have been on anastrozole since Feb 10. No SE's till last week, I had Kidney removal on March 31. Last Thursday I got left hip pain and have been dealing with that since last week. What are you doing for joint pain?
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Goin, you might try Claritin (NOT "D") and see if that helps. I keep trying it and it does help the creaky joints but does nothing for my allergies so I go back to Benadryl which does work. Get the cheapest generic. I hope it helps. How are you doing from your surgery? Hoping all is healing well.
HUGS!
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On anastrozole for a week, and so far, so good. I'm feeling fine, and the MO ordered a DEXA scan, so we'll see. I hope it remains easy! :-)
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Gail, I feel so much better. I get that feeling of being checked out. What I felt is hard to describe. All I can say was it was scary. I don't want to be there again if I can avoid it. I hope you can get some relief with supplemental meds. I will admit I am working through some guilt and frustration with what I did or didn't do while I was on the drug.
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Brutersmom....so sorry you have been suffering but glad you are feeling better now that you stopped the aromatase inhibitor. I think it's so sad that so many of us have to decide between poor QOL and no protection. It's really time we spoke up for better treatment options. Good luck to all navigating this complicated disease.
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Brutersmom: So glad you're feeling better. It sounds like we had similar, scary experiences with aromatase inhibitors. Thinking of you today.
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Brutersmom and Girl53- me too. I turned into a clingy, short tempered, anxiety ridden, crazy person. I stopped Arimidex three days ago. It took six weeks for the worst of it to hit. No way could I do five years of that
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I started taking Arimidex Mar 28th after one year on Tamoxifen. My side effects are about the same as I experienced on Tamoxifen, joint pain, headaches, hot flashes, a little swelling. I took a baseline density scan and it was normal thank God. My MO said I should take D3 and Calcium. She said I could just take Tums twice a day or get a calcium supplement. I was already taking D3 but not real big on the Tums. Just wondered what you all are taking for Calcium.
Also on Tamoxifen I was getting leg cramps at night and then they subsided. Last night I was up 4 times with crippling leg cramps. Hoping they won't continue. Anyone experience these on AI
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myspaulding - I take 1200 mg of calcium citrate because I have GERD and it is suppose to absorb better. I also take 5,000 iu of vitamin D3. I'm close to osteopenia so will also be starting Prolia injections. Always check with MO first before taking supplements. I hope your leg cramps are a temporary SE.
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myspalding, I took magnesium 500mg for leg cramps and they stopped. Be careful how much you take. You don't want the side effects from magnesium form the higher doses.
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I'm glad to read the comments of various people, although I'm sad that you've experienced unpleasant side effects. I wanted to know if the SEs could pop up later, and from your posts, apparently, they can. I haven't been on it long enough to know if it's going to happen to me, and while I hope not, it's better to know than to be taken by surprise. So I'll keep reading and keep paying attention! :-)
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I have no choice in which brand; our ins requires we use mail pharmacy and they just send whatever they want. It was always Teva when I was on tamoxifen but has always been Accord for the anastrazole. Probably the cheapest. Not thrilled about drugs from India. But have no other option, so just trust the FDA is making sure they are the real deal & safe.
As far as SEs go, majority are caused by the lack of estrogen itself, so brand makes no difference. Honestly if I was not having any SEs whatsoever, I'd suspect the drug is not working.
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Jennie, I've seen ladies here say that their SEs were caused by the fillers used. Not to say it isn't the drug itself but it isn't always the drug. That's why some ladies do better on the Teva or even brandname than other generics.
HUGS!
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Jennie, I have been taking anastrozole by Accord for three years and have no major side effects from it. I would say whatever symptoms I have, are likely the result of lack of estrogen and I would be surprised if they disappeared on the same drug manufactured by another company: some stiffness and overall dryness (skin, hair, etc.)
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