For Arimidex (Anastrozole) users, new, past, and ongoing
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Met my new MO earlier this week. So glad I went with my gut and sought a new MO after the 1st told me it would highly unusual that vertigo (tilt-a-whirl) was related to the anastrazole (I perceived it in a very patronizing manner). New MO was glad I was able to restart the anastrazole without recurrence of the vertigo and confirmed it is not uncommon. Confirmation for me that if the doctor doesn't make me feel warm & fuzzy and like they're listening to me, kick'em to the curb and find one that's better suited. I may usually be pretty tame and approval-seeking, but dealing with cancer is not the time to just play nice.
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Vermonster-Amen sister!
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Vermonster - Right There With You!
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I've been taking Anastrozole for a couple of months now and like so many of you, I'm having a lot of joint pain with trigger thumb and just overall joint pain, also killer hot flashes and insomnia. I've been hearing about Claritin working for joint pain. Have any of you tried it and has it worked? I've been taking arthritis strength Tylenol and Advil but I really don't want to keep taking that daily for the next five years. It's kind of discouraging feeling this bad all the time.
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Penny W I have been lidocaine on my legs as well as sometimes I use TEI -FU lotion. I'm trying to use the topical creams more and less pills. Right now I can't take anything but ibuprofen because of liver enzymes and ibuprofen does not even put a dent in that joint pain. I also remember stretching when I would start hurting really bad. I would get up and try and stretch out the area that was hurting would gentle stretches and massage the area as well.
If you're having wrist pain mine seems to hit in the arm that I had my surgery and in my lymph nodes taken out harder than any other part of my body except for my knee that I had surgery on a few years ago. I'm trying to experience experiment I'm going to get a cover for my arm and keep it warm at night because I noticed when I wear socks up to my knees my legs don't hurt as bad. However hot flashes do make that very difficult to want to keep on for sures!
I'll be watching your post as well to see if anyone else has any better ideas out there.
Have a nice day tomorrow!
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Penny, I've been taking Claritin for stiffness for about 4 years. It doesn't do a thing for my allergies but it helps my stiffness especially in the morning. I don't have the type of joint pain you do but I'd give it a try. Remember REGULAR Claritin NOT Claritin-D!
HUGS
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PennyW- I had trouble sleeping thru the night for the first 3-4 months. At 6 months out it has stopped; I sleep thru 7-8 hours. I hope with time you can get a good night's sleep.
Joint pain for me is relative, I have arthritis in knees, wrists, and all thru my back. All have hurt before Anestrozole, although I feel they hurt more now. I work out hard about 4-5 days a week - that helps with stiffness and pain.
I avoid taking Advil knowing in the long run I'm damaging my liver, etc. But some days if I hurt bad, I take it. We do what we need to do to enjoy life. I just put Bengay Zero Degree on my knee, you keep it in the freezer, feels good.
I have bad allergies so I take Zyrtec-D every day, can't really add regular Claratin on top of that, so I have no input if that works. Best of luck to you!
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Cindy, I also have bad allergies. My PCP said I could take. Both Benadryl and Claritin. So I have been for about a year. No problems either.
HUGS
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I've been struggling with the issue of AIs for some months now. I started taking anastrazole (Teva generic) in May and found the side effects mostly manageable at first. Got very upset when I went for a haircut and my stylist noted how much thinning had taken place. With full awareness that hair is not the MOST important consideration, and keeping cancer away is, I told my MO, and she said it would be OK to take a break until after my reconstruction revision surgery in October. I have osteopenia and have had the first of my Zometa infusions.
Since stopping the anastrazole, I have been feeling absolutely fantastic, doing a lot of exercise and getting in better shape.
At my "survivorship" checkup, the PA emphasized the absolute importance of taking the AI. Apparently my MO has proposed trying letrozole. I can't imagine it would be better -- it all seems like a "crap shoot" to find what might work -- another AI, the brand-name rather than the generic?? So confusing. Afraid the letrozole might be worse.
Even though the docs all shake their fingers against this, I have been following Facebook groups about arimidex, femara and other AIs, and the reports by members have completely freaked me out. I know not everyone experiences the worst effects, but I have not been able to avoid the dread about the effects of the AIs, not only on appearance but on health. Have heard everything from fractures, heart and liver problems, hives, thinned hair, severe joint aches, huge weight gain, etc. etc.
Thanks for letting me share, this is weighing heavily on me today.
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Miranda, I went through something similar - I had bad SEs on anastrozole. When my MO suggested a one-month vacation from AIs, I felt significantly better once the anastrozole was out of my system. Rather than resume it, I switched to Aromasin & have almost no SEs these days. Before you give up on AIs, you might want to try a new one to see if it's a better fit. Good luck with whatever decision you make!
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Thanks, JKL2017, that is good to know.
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vermonster, well said. I agree.
Penny, i could have written you post! I'm feeling exactly what you wrote. I'm wondering as others write about switching from anastrazole to another estrogen receptor drug, don't they all result in hair thinning, and some kind of se's? I'm 2 month in with anastrazole, the hot flashes are more like heat waves, sickeningly strong, and very uncomfortable. Joint pain is tolerable, but insomnia is not tolerable.
No matter what we take to alleviate pain and induce sleep, isn't it all having a cumulative negative impact on liver and kidneys?
Is it about finding our own individual balance of health, preventing a reoccurance, and quality of life with these meds?
I'm trying to give it till Dec when I see my oncologist who prescribed the anastrazole. However he tends to keep an arms length away from any discussion involving issues and complaints.
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Hi Miranda-did your MO discuss any risks with Zometa or Prolia? I’m thinking I probably should be doing that with Arimidex but I worry. Does anyone have input?
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my dentist said there was less risk of jaw necrosiswith oral biphosphanates so I will be doing that instead.
Not much fun, I am sweltering way more than menopause. The joint pain is manageable so far after a rocky start, but I am finding increasing insomnia. I may change my time to morning to see if that helps. I want this to work.
Seems like there are a lot of issues finding what works best with the least side effects for each of us.
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I haven't been coming here regularly since everything tapered off for me. I do want to add one thing and encourage those on Anastrozole- see, I've even forgotten which it is, Arimidex? I was worried about side effects like most of you. I started on it last April 2017 and at first I had stiff joints in the hands and legs in the morning. I am not exercising like I should be. I am taking Claritin and on the Teva manufacturer like some suggest. And at some point, all the side effects have diminished. I am having problems only the first time down the stairs in the morning. So, hang in there! I know people have different reactions, but you don't know until you try it.
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Thank you tnd22 for that encouraging post!
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Rwns, my onc gave me a printout about Zometa, including side effects. I had the "flu-like symptoms" after my first infusion, but it was tolerable. I know it also is supposed to help prevent bone mets, so overall I think it's a good bet.
Thank you, tnd22, I can use encouragement. I believe for my own sanity, I may have to stop following the AI Facebook groups and focus on the positive.
Djt, you really summed up the struggle.
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tnd22, thanks for the positive input. Thats exactly what im hoping for is just giving it a fair chance and perhaps se's will even ouf and even diminish.
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Right there with you DJT!
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Yes. It gets a little nutty and I don't want to psych myself out too much with the hot flashes and ache counting.
I have been taking Arimidex since March. In August, my Oncologist gave me a holiday off it, now taking every other day to see if the joint pain will let up.
Ultimately I need one of these AIs, so I am trying to commit to this one.
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Ind22 - I don't really have much in the way of side effects either. First thing in the morning, I am kind of stiff but once I get moving, that pretty much goes away. I bought Claritin but always forget to take it, so I gues I don't really need it.
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I tried Reclast because I started anastazole with known osteoporosis. It's not a drug I would approach with a ten foot pole ever again. I was so sick 15 hours post infusion that I was contemplating calling 911, and while the clinical signs lessened daily, it was a week before I felt ok. I realize I was an outlier, but make sure your clinician doesn't give you the runaround about side effects and have someone with you for 24 hours in case you need emergency care.
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Thanks everyone for the feedback on the SEs for the bone strengthening meds. So far Arimidex hasn’t been too bad. I take it in the morning so as to prevent insomnia. Maybe running and weight lifting will prevent the bone loss and I won’t need anything to go with the arimidex.
Benny bear-I like the idea of taking a pill instead of infusion..do the oral biphosphanates also help prevent bone mets?
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rwns, yes the pills also work. My MO mentioned clodronate specifically that has been used in trials.
I too am managing the SE, not too bad. Hopefully this will go well for all of us and do what is necessary without toobig of side effects.
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I'm 57 so not a young pup. Always weigh the benefit vs. risk. I feel for all you having these SEs!!! I was told by my BS before I started to stick with the AI for a bit to see if SEs lessen or go away. MO said the same. I was worried about the joint aches before I even started since I already had aches and pains of unknown origin and I didn't want it to escalate. I've been taking Anastrozole since the end of June. I was already doing exercises with weights and walking -the aches came right away after starting this pill, however I kept walking, kept moving, and at present they are not as bad as when I started. The only constant I seem to have is a stiff right elbow. I have 3lb weights at my desk that I use through the day now. I have also experienced hair thinning, it's still coming out but I'm not freaking over it any longer. Last week I missed a day of work as I had trouble staying upright. It's interesting to see others in this thread had vertigo. I don't think I had full blown vertigo but I was dizzy and I related to sinuses and not this little white 1mg pill!! Now I'm wondering if I add it to the SE list. Next, it's only been a few months and I've had to clean out my left ear with peroxide and last but not least, I am making an eye dr. appt. I think I might be getting cataracts. My eyes are acting funny.
So, can I live with all this? Yea most of it is fixable and it truly is not affecting my quality of life, and I BY FAR would rather deal with these sort of things than cancer. I also know the pill is working and there just can't be any estrogen in my body-LOL! I will also be given Prolia next year as have osteoporosis diagnosed just before the BC diagnosis. I'll worry about anything happening from that stuff much later.....
That's my story so far with this AI. Hang in there everyone!
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Hi l too was put on Arimidex earlier this year as diagnosed with DCIS in situ grade 2 have had lumpectomy and 3 weeks radiotherapy. I found the hormonal therapy very painful too my feet and knees. Since stopping l have been diagnosed with osteoporosis in my neck and spine. I think it’s while l was on the Anastrozole and will be seeing oncologist very soon. Dexa scan has said l need to take calcium and vitamin D. And possibly Glucosamine chondrine. I’m dreading what pain relief l will be given as Winter is upon us. How have you coped and any suggestions
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Every now and then i do get a bit lightheaded and I also have lost some hair here and there, but nothing that I am seriously worried about. That little white 1mg pill is doing its job so I will put up with the aches and joint pain, hair loss, vertigo, and whatever other SEs it throws at me just as long as it keeps the cancer away.
I don't mean to make light of those who have had awful SEs with Arimidex. I know for some it has been difficult if not impossible to take. I know I am very fortunate to have fairly light SEs that I can tolerate. I wish it was like that for everyone.
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It's crazy worrying about every little thing and having this little white pill reek havoc on your body. Currently on day 9 with a headache. As mentioned earlier I didn't feel well (balanced) last week. I really thought I was getting a sinus infection. It wouldn't take a week to start draining, so now I'm wondering if it's this pill? Maybe it's as simple as this 30 day supply has some filler in it- or it came from some where different than previous months and that is affecting me. Anyway, I'll figure it out and work around it . I don't think it warrants giving up or reporting it to the team just yet. Going to try some ginger steam when I get home and through the weekend. Also will note if next re-fill this will go away and I can go back to my running nose instead! God it felt good writing that down!!! Blessings to everyone, have a wonderful weekend.
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Yes, CTMBSIKIA, crazy worrying about every little thing with this little white pill. Yesterday was a long day. I went to bed very early, freezing - I just couldn't get warm. It was over 70 in the house, so it really was just me. My husband piled a double layer of winter blanket on top of me, which finally worked to let me stop shivering. My stomach hurts (as though I did a hundred sit-ups and I know I didn't do that!!) and I'm also sick to my stomach, no appetite (and that never happens), I'm "burpy" (and it's gross) and I ache all over, on top of the hip ache I'd started to get used to. I also feel a little dizzy/queasy. Plus my fingernails have a bluish tint near the base. Is it all just the Anastrozole? I'm on day 29 of taking it. I feel like a whiner and that's making it worse. My husband bears the brunt of my whining because almost no one else knows the theme of how I spent my summer. Ugh. Thank you for listening - knowing I'm not alone even though I don't know any of you does help.
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Vermonster - have you called your MO to ask if those are normal SE symptoms? It almost sounds like the flu but I can't figure out the bluish tint on your fingernails. I guess I would be inclined to call just in case.
Vermonters are hardy stock (I grew up in Wilmington, down near Bennington and Brattleboro) so I doubt that you are much of a whiner!
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