For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hortense, I have the same problems but in my case and I do hate to scare anyone, it slowly increased over the time I was on the AL and actually worsening now that I am off the dang med
yeah, I can not get up from the floor, when I go to the gym, I do stretching from a yoga table and not on the floor
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Am using the Teva brand but still have the SEs.
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Wow, I have a matching finger (s)!! Plus, similar issues in my feet and wrists. This has been a slow process. Initially, I had few SEs but over time these joint issues have been developing. Last year, I had tendonitus and trigger thumb in my right hand for about 6 months. After OT and home treatment, they finally resolved. Then in Dec. (exactly 2 years after I began anastrozole), I developed tendonitis in my LEFT wrist. After 7 OT visits and home treatment, it is better but not yet resolved. I have a visible bump on my wrist that I guess is swelling. Then one day the joint on my left big toe began to burn. I looked at it and saw a swollen joint. It seemed to swell spontaneously and suddenly, only on one foot. It doesn't hurt but still there. I hope it doesn't get bigger and affect shoe fit!
I don't get much help from the medical community. My OT did not believe that the tendonitis came from anastrozole, said it was from an injury. Wouldn't I remember injuring it? Other doctors just think arthritis. Even my oncologist was only sympathetic and said "only three more years to go!"
This is the only place that I get any validation for these problems so I thank everyone for sharing their thoughts, observations, and stories. I also thank everyone for allowing me to vent because in the big picture, I know that these problems are worth it if the med keeps cancer away.
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last week I went to a physiatrist at Hopkins. She looked at my finger and said to the resident. "Those AIs...II see this all the time". Told me she was going to call MO to discuss if we should switch to another one or tough it out. Today it's the feet. We are going to a graduation and I have to wear sandals as my foot is too swollen across the top for shoes
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Janett2014: How did you arrange for this with CVS? I have been askign to get TEVA, but without any success!
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Wendywinslet, I get mine through CVS Caremark mail order, but it shouldn't be a problem to get the Teva brand at a CVS drugstore. I did have to get my MO to write a new prescription which specified Teva brand only. Ask the pharmacist what you have to do to get it. They might need to talk to your MO. They have to fill it according to the prescribing doctor's specifications.
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told my pharmacist that was all I'd accept and he has honored therequest
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Wendywinslet try a different CVS. Sounds like the pharmacists is a lazy dick(ess) and doesn't want to order it for you.
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I started on the Cymbalta study for muscle and joint pain. I only made in 3 days, had terrible diarrhea and abdominal pain. So they took me off it for a few days and I started again this morning. So far, so good. I just hope I can stay on it to see if it will help.
Has anyone or is anyone taking anything else or this one??
Mary
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Hi, I was put back on Arimidex after suffering debilitating headaches on Femera. I am finding my brain doesn't seem "to work", I am having problems finishing thoughts and sentences and forgetting things. Could this be the Al?
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ky---yeap could be. So glad I was able to stop work as I would never be able to remember details of my job as I was before
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kyliet have you tried Aromasin (Exemstaine)? That's what I've been on for the last year.
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Kyliet - I was on Femera, Arimidex and Aromasin -
Aromasin is the one that gave me the least "brain fog"0 -
I feel so relieved after reading everyone's comments about the SE of Anastrozole. I also walk with difficulty after waking in the morning. Sitting any longer than 30 minutes also causes stiffness and pain. My hands have had arthritis for longer than I've been taking Anastrozole, but my knuckles now are huge! I avoid yoga classes because it is embarrassing when I cannot easily stand up after being on the floor. I had a 78 year old woman offer me a hand to get up, and I am only 65! I also notice lack of coordination and balance problems. I have been taking Anastrozole for 2 years, and I take an Aleve in the AM and one in the PM.....this does make it less noticeable for me. My Oncologist also believes in the 10 to 15 year plan. Heck, if it keeps me alive, I will take it for life.....my friends understand and we all share our SE problems. Each of us has a different malady.
Thanks again for sharing, ladies.....you make me feel "normal."
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Mary yes I 've been on Cymbalta since before and it helps with both the depression and the pain last year I had insurance issues and stopped taking it for a month and I felt the difference I also had diarrhea but it was fixed when they found and controlled my hypothyroidism. Good luck.
Aurora
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Hi Suladog and ladies,
I was reading this post and decided to chime in. I am also HER2+ and ER + (1%). I have finished treatment with Herceptin last month and have been taking Arimidex for many months now. I have also struggled with joint pain throughout my entire body. It started a few weeks after finishing Taxol treatment so I do not know if I can blame the SE entirely on AI. As we take steroids with each weekly Taxol treatment, I feel that may have been masking the pain and when I stopped the Taxol I also stopped the steroid. A few weeks ago I developed feelings of sadness and depression. Not sure if it was a combination of ending treatment or what but it scared me as I have never had mood changes such as this before. I stopped taking the Arimidex and feel like myself again. The joint pain is also dissipating. The decision to stop the AI was a hard one for me, but I am confident in my decision and will hope for the best. I also do not have any desire to try a different AI.
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As I am only 1% positive ER, I am hoping that the decision not to take the AI will not have as much of an impact as the HER2+ does. My MO says a positive is a positive... I have tried to research info on this topic, but there is not much out there.
Laura
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NurseLaura -It's interesting what your MO said about 'positive is a positive'. I am PR positive but only at 5% - my MO said "This may be difficult to treat".
And the confusion continues...
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Nurselaura, seems like 1% ER positive would not be enough for me to take an AI. I am strongly positive and with my aggressive BC, can see why I am taking it. However when you mention sadness and depression and feeling yourself again after stopping the AI, I have to wonder. I have been on Anastrozole for over 2 years and have been battling sadness, depression and often just plain anger at small things off and on~~on for the past few months. I try to journal how I am feeling day to day and also keep track of things like sleep or lack of it, hot flashes (switched to taking it at night very recently to see if that would help~~maybe). I see my MO on Monday for my 6 month check and will bring up the mood changes though she may well say go see the psychiatrist at my cancer agency again. Don't think that is the answer but would be interested to see if it really is the AI that is making me crazy at times.
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Thanks ladies, yes I have tried Aromasin and had massive migraines also. I wanted to be on Aromasin because the SOFT trials had good results combining Zoladex, which I have every 4 weeks, with Aromisin. Hate this stuff
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The first week or two I was on this, I turned into an evil, mean, wicked, nasty, foul mouthed witch. I figured it was the pill, kept my mouth shut as best I could. That has gone away. I have a down day or two, I allow myself that.
The depression is real I think. You've been through a lot of physical and emotional stress. Now, you're done. No more appts, nobody poking you. Done. It seems strange after the rat race of tx. Talk to your Mo or PCP about an anti depressant. Try to find your new normal. It does get better.
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another thing to look at....just tossing it out there but mood stuff, anger etc can come from PTSD, my mo sent me for treatment 25 years ago when I came out of chemo a raging monster....just saying. This time around I knew enough to get help on my own early. I wasn't given drugs but sent to a shrink who was herself a cancer survivor. Best thing I ever did
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I have to say I am VERY scared after reading all these posts and all the horrible side effects from Arimidex. I am still in chemo, then, will have reconstructive surgery and Arimidex. If having a BMX and chemo isn't enough, I am thinking taking this drug will be just as bad. I have been told Ibwould take it at least 10 years. I am 98% ER +. I sm thinking that everyone has bad side effects. When I googled information about Arimidex, there are more side effects than with chemo. Is there anyone who does NOT have joint/bone pain, headaches, and all the other SE
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MOST people do NOT, NOT, NOT have most, if any, horrible side effects!!! If you read every single bad thing that could possibly happen from taking any drug (including aspirin), you would never dare take anything. When you know that something will REALLY reduce your chance of recurrence (which Als DO.....they are even more important than chemo), my advice would be to take it like you would any other vitamin/pill and then go about your day. I did fine, every single person that I know personally on Als has done fine. Assume that you will do fine too, if you do have problems, then check out the boards (or if you find you don't have trouble, come back and be encouraging to others). People who have nothing else they can do after their initial treatments (including our triple negative sisters) would be thrilled to have this option!
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mysunshine - there are LOTS of people who don't have any se's - my BFF was on AIs for 8 plus years and didn't have any se's at all - on this thread Ruth Bru comes to mind and there are many like her - I myself "failed" all of them - you'll find that the people posting are the ones having problems and looking for help the ones who are doing fine are out there living normal lives and not posting at all - you won't know until you try.
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mysunshine,
What Sandy and Ruthbru are saying is correct. I was terrified of taking an AI and I've had bc twice 25 yrs apart, chemo and MX both times, none of it was scarier than reading all the AI stuff here. My MOs all told me it would be ok, but I was still scared until some of the ladies here reassured me that most people don't have terrible SEs. Of course, these boards are where we come to share and so of course this is where you will see the ladies who have had and are having difficulties, those of us who are having no trouble don't show up to say everything is ok, but I'm saying that I'm taking arimidex and there has been no change for me.
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Seems like this should also be a place to talk about the S/E we do have and be happy for those we do not have. I am happy I do not have much stiffness or aches and pains that many have but it does not mean I don't have S/E. I am on Anastrozole because it is a big gun against recurrence. But if this is thread where we cannot talk about the S/E we have then let me know and I will take it off my list of favourites. Since my DX of BC, I have felt it is important to be honest and am one of the first to say that often only those with negatives post but I don't think that is what I have said. I am hoping to see if others have similar S/E since all we have otherwise is what the drug companies tells us are the S/E, common, rare etc.
BTW, I do think that Anastrozole is manageable and I am still living a pretty normal life. I led treks to Annapurna Base Camp twice last year and will be leading a trek to Bhutan in the fall but that does not mean I feel great all the time. I am 66 and consider that what I can do is decent for my age following all the treatments yet still, I often find this aftermath difficult. Maybe PTSD~~just don't know.
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I don't want people to not talk about their difficulties, but I do want newbies to know that for most people anti-hormonals are very doable. I'd hate for anyone to be terrified to try something that was medically indicted, something that might very well save her life, because of something she read on these boards (or read on any internet search for that matter)....whether it be Als, chemo, radiation....whatever.
Goodness Marian, you live an amazing life for a person of ANY age!!!
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Marian and Ruth,
I agree , I've talked about plenty of SEs I've had with two Mxs, CMF chemo for triple negative and the issues w/ taxol/ herceptin. I can't stand it when I hear a dr. denying SEs from anything as if they didn't exist, when everyone knows they do. This is definitely a place to talk about the side effects of anything one is experiencing, but I was ready to tell my Mo I would refuse any hormonal treatments based on what I was reading, if people here hadn't told me to just try it and I might be ok, I might very well have blown it off. After, chemo, and now doing a year of herceptin , I was thinking I couldn't do anymore stuff. In my case, and this is just me , the Arimidex is is the only things that hasn't given me a problem so far. My sis in law even told me not to take it as she had terrible SEs within the first 3 days on it
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I look at it from another angle. If I can ask on here if my side effect is possibly from my Arimidex then I can take that on board, try and manage it and not worry that something else might be going on.
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