Arimidex - Coping with the SE's
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Well, after 5 months on Arimidex, I can report back that I have 1) joint pain and stiffness, especially when I get up to start walking--I can barely move until I get going, and it certainly is not helping my chronic back pain that I've had for years, 2) plantar fasciitis, 3) Multiple bladder infections in one month and severe vaginal atrophy which is causing the urinary tract problems. I would like to do 10 years on an AI, but it is not looking good at this point. Other than the chronic back pain and insomnia I have had for years, I did not have all these other problems prior to hormonal therapy. I have always been naturally fit and spry. Now I feel 90. I was hoping to have better tolerance that this and am bitterly disappointed. The chronic bladder infections made life pretty unbearable.
Edited to add that I am taking brand name Arimidex. I seemed to do better on Zurozol, but I cannot get it anymore, and now I wonder if it is time (accumulated med in my system) or if Zurozol was weaker which is why I am having more issues now.
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The dosage is always the same, it's the fillers in the various brands that can give you more SEs on one than another. Looks like ASCO is recommending going back to 5, or at the most 7 years on an anti-hormonal, so that is good news anyway.
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Ruthbru - That is a relief on the one hand, but then a worry on the other! I would like some other form of protection--wish more meds would be approved for early stage as well as mets.
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Does anyone know if Anastrozole causes blood clots my internist said yes that I should take a baby aspirin everyday to avoid blood clots but my oncologist says no that Tamoxicin causes blood clots. I have been taking Anastrozole for the last 2 years without any side effects so far. Is anyone taking baby aspirin to avoid blood clots with Anastrozole?
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I have been told and read that it can but I think the risk is higher with Tamoxifen. I have been told to take baby aspirin at least a few times a week but I often forget. I do take fish/krill oil every day, however.
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chronicpain - I gained about 35 lbs since I was diagnosed. My MO told me that the Arimedex would cause me to gain weight. I was working out on an elliptical 3-4 times a week for an hour each time, and just maintained my weight. Now I watch what I eat. I don't feel tired but my job is time consuming and I'm trying to figure out a schedule to get on that would include exercise. My husband gets up early and walks and he has lost weight. I just can't get up that early. AND right now I should be working out but I'm here . LOL . Part lazy part ADD
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Check out the Lets Post Our Daily Exercise thread on the Fitness Forum. A great group of women at all stages of treatment and beyond and all exercise levels too. We are great cheerleaders/motivators for each other!
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Hi All - I've been taking Arimidex for almost 5 years - and was really looking forward to stopping it at the end of next month. But, now I've been told by my Oncologist that I "may" stop it then but that studies are inconclusive. I've reaserced this and see that 7 years is probably best. What do you guys think? Also.... I was taking Celexa for almost 2 years and stopped recently. Now I have lots of aches and pains. Any SSRIs for this that you think are good?
Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Wallan - I've only been on Arimidex since this past June, but I definitely have all of the "classic" side effects. I actually told my husband back in August that I thought maybe I was starting to have early dementia. But then I talked to my oncologist and he said memory loss/problems is one of the side effects of Arimidex, along with depression, mood swings, weight gain, insomnia, etc. I'm taking Zoloft and will probably be on it forever, so that has helped with the depression and mood swings. Also started taking Melatonin and that seems to help me sleep most nights. I do have back and hip pain but had disc problems before my mastectomy so I don't know if it's that or the Arimidex. And now I can add a frozen shoulder to the list. Cancer is so much
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Snickers, the good news is "usually" the side effects either go away, become fewer or your body adjusts to where they are manageable. Keep a diary so you can report to your MO any that really are annoying as there are other AI's out there to try. I'm just finishing up 9 years on Arimidex and only had problems with carpal tunnel and trigger thumb but they cleared with one cortizone shot together with wrist splints for a few months. I have managed to keep the weight down with exercise (which I need to get back to) but the tire around my middle refuses to abate. It is what it is and things can be lots worse so I'm not compl;aining.
cvmarilyn, these studies are confusing and annoying. When I started in 2009 they were still studying and my MO said 10 years since I am ILC, the sneaky one. Now they are saying maybe 7 years are enough but I'll stay on another year, just because. It is different for each of us so there is no 'one size fits all'.
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cvmarilyn, I've been on anastrazole for over nine years. For most of that time I had minor or very temporary side effects, so I was all for staying the course for ten years. However due to arthritis pain that has gotten much worse recently, I am considering asking my onc if I can try another AI or stop altogether. The decision will be based on whether I can find out just how much pain will go away if I stop. I will ask about taking a short break in the New Year to see how my poor body responds.
As long as you can stand any side effects, I say stay on any medication that helps keep BC away!0 -
Cvmarilyn--I was taking Fluoxetine (Prozac) before diagnosis, and wound up having the dose really increased during treatment. It works great for me. I saw the research reports that show that there is no difference in benefit intaking the AI's for 10 years versus 7 years, and some benefit from 7 years over 5 years. It really sounded like the recommendation was going to be 5 to 7 years, with the majority of benefit being obtained after 5 years.
Snickersmom--carpal tunnel syndrome and frozen shoulder are known side effects of the AI s, as well as general joint pain and stiffness. Loratadine (Claritin,) oddly enough, helps a lot with the general joint/bone pain and stiffness. I took one daily the entire time I was on arimidex after I noticed how much it helped when I was taking it during allergy season. It's worth a try!
NancyD--changing from anastrazole to one of the other AI s can help with really bad side effects, too.
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My self-diagnosed carpal tunnel syndrome started with tingling in my left hand when I woke up in the morning, followed by total numbness of that hand. I followed advice I got on BCO and bought a night wrist splint, which I have been using for several weeks. I’m thrilled to report that my symptoms are much better. No numbness when I wake up. Slight tingling from time to time. I see my MO next week and plan to ask him if other patients have reported this SE.
I also fixed my extreme crankiness by adding magnesium to my regimen of pills. It has definitely helped (at least in my opinion - not sure what my DH would say!).
This domino effect of one treatment leading to another is certainly a challenge!
MJ
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Hey ladies and Snickersmom:
I just love these boards for all the "real" experience and wisdom you get. You are all awesome for sharing it!
I am now getting hip pain, shoulder pain with my arm getting weaker sometimes and achy, and shooting pains into my hands and feet from time to time. Plus, migraines continue and the damn insomnia. GI issues too. But then again, I have always had a sort of irritable bowel I think (never "diagnosed" medically) so mo surprise there. Its good to hear in a way frozen shoulder is a SE of Arimidex, because I worry my shoulder pain is mets. Same as hip pain too. It does come and go this pain.
As for insomnia, melatonin does not help consistenly enough with me and I get really anxious the next day when I take it. I do sleep most nights without it but I have trouble falling asleep no matter how sleepy or tired I am initiallly and then I wake very easily. So my Fitbit says on average 6 hrs a night, but I toss and turn and my quality is not great. So I feel dragged out and tired everyday. Very little energy. I think two nights of the week I get 1 or 2 hours of sleep only.
I am on Effexor XR for anxiety and depression which helps alot. My DH does say though I seem depressed. But I don't feel depressed. I feel very tired, with little energy. Could this be depression that I don't recognize?
And, it seems if I overdue my work or socializing, it triggers migraines. Stress does this I guess. I can't handle it anymore. And the migraines are the worse.
I do hope as I read, that SE can improve over time. Its only been 7 months for me on this drug, and the SE are showing up more and more. Likely due to low estrogen. If I tough it out, there is hope it will get better it sounds like. Or you just get used to it.
Good to hear.
wallan
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I too had carpal tunnel symptoms and a trigger finger. The trigger finger gradually went away after several months. I also wore a wrist splint at night for a few months and that resolved that problem. Hope the same for others.
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Wallan--tiredness, sleeping problems, anxiety are all signs of depression. I have depression, have had since before bc, and I didn't feel depressed, I felt tired, easily irritated, had trouble concentrating and coping with change, and wanted to sleep all the time. I feel so much better, nothing specific, just overall, taking generic Prozac.
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Hi NativeMainer:
I am glad you feel better with Prozac. Its interesting that you didn't know you were depressed; you just felt tired.
I am on Effexor XR for anxiety which I have suffered with all my life I think. I am a worrier. When I got BC the second time, I started to get panic attacks and that prompted the doctor to put me on Effexor XR. The anxiety is much better and no more panic attacks. Yeah! Effexor XR is also for depression though. So you would think it would treat any depression if I had it.
I am tired alot, but I always think it is due to insomnia. And I am not motivated to do much - I think its due to being tired and low energy. And stress does cause me to be irritable and I think its due to being ovetired too. Huh. Maybe there is depression in there too and I don't know it. My DH does ask me almost everyday if I am okay lately and if anything is wrong. And there is nothing wrong. Just tired. If I am on medicine that is supposed to help with depression, and I am still depressed, what can you do for it?
wallan
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Exercise helps with depression and will give you more energy too. Really, it will!
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Wallan--identifying and treating depression isn't as easy as a lot of people think it is. Feeling depressed is not a common sign of depression, oddly enough. Tiredness, irritability, mood swings, anxiety/panic attacks, low energy, sleeping issues (not able to sleep well or sleeping all the time), feeling overtired are all part of the depression issue. Depression also needs rather individual treatment. Effexor is a great medication for depression with anxiety. Often the anxiety part is easier to treat or responds first to medication. Talk with your PCP, you may want to try a higher dose of Effexor. Or your ideal treatment may be to combine Effexor with another type of antidepressant medication to attack the depression part. It can take a lot of trial and error to find the best treatment for an individual. How long have you been taking the Effexor? Most antidepressants start to work in a couple of weeks but need 6 to 8 weeks to get to full effect. As Ruthbru says, regular exercise helps, too, but if the depression is bad enough it will take some chemical treatment to get to the point where enough physical pain and exhaustion is relieved so that exercising can actually happen--this I know from experience.
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Hi NativeMainer:
I have been on Effexor for 7 months now. My anxiety is way better. I agree that I may be depressed after reading this over. I didn't know I can take another antidepressant with effexor either. I don't really want to up the dose of Effexor because of SE. I'm on 150 mg now. But maybe I should try it anyways.
I will go to my GP and ask.
Thanks I will keep you posted.
Wallan
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Wallan--do talk with your GP. There are a lot of options for treatment of depression and I'm sure you and your GP can figure out something that will work with minimal side effects.
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My left knee has just started hurting when I walk down the stairs. I’m assuming this is from the anastrozole. Any advice on how to treat it? I see my MO tomorrow - I now have quite the list of SEs to go over with him!
MJ
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So I saw my MO today and he doesn’t think my left knee pain is from the anastrozole because it’s only in one knee and it’s months after I started the med. He’s sending me for an x-ray. Also a chest x-ray because of my chronic dry cough.
Seems to me SEs can pop up anytime. What has your experience been?
MJ
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MJ, you are absolutely correct that SE's can come at any point. We have found that our doctors know less than our friends here on BCo which is why it's such an important website. Many, many, many posters here have reported over the years that their doctors downplay our concerns and don't know enough about these meds. Does he think that you cannot have arthritis unless it's also in both joints? Drives us all crazy but of course have the x-ray in any case. Yes, maybe it's not from the med but not because it can't show up later or in only one joint. Some of us also had problems with carpal tunnel, another SE, so would he have said it was not caused by the med because it was only in one hand, or only one finger!!! Okay, finished my rant.
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Thanks, patoo. Fortunately the night wrist splint I’ve been wearing helps tremendously with the carpal tunnel I developed (I have no doubt from the anastrozole!). I only have occasional tingling now and can live with that. The MO pretty much dismissed that, too.My knee really bothered me in Zumba this morning; I may buy an elastic brace to wear during my fitness classes.
MJ
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Tappermom, you may want to lay off the zumba and take it easy a bit until you have done your knee xray and further workup to diagnose the problem, though the brace could help meanwhile for walking the stairs. In case you have bad osteoarthritis, or a torn meniscus in one knee (that would not show on xray BTW) that has been trigerred by all your exercising since BC diagnosis, which you would also be at risk for at your age, you do not want to worsen it.
If doc cannot make a proper diagnosis, ask for a rheumatology referral
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Thanks for the advice, chronicpain! I am skipping Zumba today because I had a report I had to get edited and submitted this morning. Maybe resting my knee a bit will help. I couldn’t do squats at fitness class yesterday - so I just didn’t do them! My instructor is so cognizant of everyone’s challenges.
MJ
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Hello ladies, first time to post here. I have been on anastrozole generic for two years now, previously three years on Tamoxifen for three years. My question is have the hot flashes gotten better with you over time? I have been on Lexapro for 5 years already, initially for depression, but now, i think i can manage without it but worry about the hot flashes
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For what it's worth, my experience with hot flashes started before bc. I was in menopause for about five years before I was diagnosed. I think I was just getting through the worst of the hot flashes when I had to start anastrazole. They started up again, but mostly as night sweats, rarely daytime hot flashes.
I still have sensitivity to heat at night. I like my room pretty cool (or as my daughter says, refrigerator cool). At this point over nine years later, I think I've settled into it.
My feeling about AI side effects is that hot flashes is the least of my problems. I'm pretty sure it has exacerbated my arthritis. I find that harder to live with than hot flashes as it curbs my physical activity. Less than a year before my diagnosis, I did a half-marathon, with plans to keep up and maybe get to the point of doing a marathon. Now my hips and back are in no shape to do that. Even a walk around the block has me in pain. And consequently, my cardio and respiration have taken a hit from lack of activity.
I don't want to scare you away from taking what could be a life-saving drug. I would take it again if I went back ten years. This is just my experience—and everyone will have their own.0 -
Thank you, NancyD for your reply. I just basically want to wean off totally from lexapro. You are right, the hot flashes is the least of our problems. Five years from last chemo and my brain fog is getting worse. I think maybe if i cut down on some meds like lexapro, i might see some improvements. Physically, i know how you feel too. Im a crossfitter and it is so frustrating not to be able to do the things I took for granted before. I even have a physiotherapist to help me but still my knees and most of my joints wont cooperate. Bone scan revealed almost all of my joints are arthritic. This is a lot to deal with that i am trying to take with a grain of salt. But yes, im still okay with taking arimidex despite all these.
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