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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • magari
    magari Member Posts: 335

    Whatjusthappened - I switched to Femara after about 14 months on Arimidex because the Arimidex was causing previously resolved plantar fasciitis to flare. I've been on Femara for about 3 months now, and so far it's better for me.

    Still some hot flashes and joint stiffness, but both are manageable. I do take Effexor ER 75 mg to limit the former, and melatonin to help with sleep.


  • whatjusthappened
    whatjusthappened Member Posts: 178

    Thanks ladies for your experience- it sounds like it could go either way, but I suspect the lack of estrogen is going to be the culprit regardless of the drug. I hope that I don't get to feeling so good in the next month that I don't want to get back on an AI:) I really want to do all I can to stack the odds in my favor, but I really don't know if I can stick with side effects like I've had for 5 years. It has to do with co-existing conditions that are exacerbated by the medicine.

    On a side note, do those of you who take magnesium for leg cramps take it at bed time? I've been taking it in the morning with my calcium, vit D, and vit K. The leg cramps last night were brutal, so I'm thinking of adding another night time dose.

  • Taco1946
    Taco1946 Member Posts: 630

    I don't think I was depressed but I certainly was "bitchy" on Anastrozole. Doing much better on Letrozole. Even DH noticed after I switched. I have taken a few one week breaks when the headaches got too bad and a reset helps. Was going to quit for a while because my knee replacement is still painful five months out but then lost several friends to cancer in quick succession and decided I would deal with the knee pain with a return to PT instead.

    I also find it helpful to remember that the holidays can be hard and stressful in the best of times. Reach out and get the help you need. We don't need to be wonder women.

  • missouricatlady
    missouricatlady Member Posts: 894

    I either take a swig out of my Magnesium Glycinate liquid during the day at work, or take Magnesium Glycinate about 5 pm when I get home from work. And then I take Magnesium Taurate with my Arimidex when I go to bed and sleep with the bar of Irish Spring. Hugs, Whatjusthappened, it is one of the worst things. You lose your sleep too.

    A friend recommended the magnesium taurate and it worked for me. Everyone is different. Someone recommended a magnesium lotion to me, I can go back and try to find the name of it in my private messages, if you are interested. Don't give up, something may work, and with a little time, it may get better. If not, there are other AIs. Hugs.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    I do the gummies during the afternoon. I was evil, mean, wicked and nasty when I started aramidex. I even barked at the dogs. With the night sweats getting confused with blood sugar crashes, I took Effexor for a few months. It helped with both.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    Magari, my MO told me that in his experience, Arimidex seems to cause his patients more joint pain than Femara. I'm glad that the Femara works better for you, that gives me some hope.

    Taco1946, I'm glad your mood improved on the Letrozole. I haven't been "bitchy" per se, but certainly more down than is my usual. A lot of that has been from the combination of a stressful job and a total lack of energy. Being exhausted means I don't want to exercise, which makes me hurt more, gain weight, etc. A vicious cycle for sure. I'm going to use the time off to see if I can get in a groove again that maybe I can keep up on the Letrozole. Here's hoping anyway.

    MissouriCatLady, l'll confess to not knowing a lot about the magnesium supplements. I know there are a lot of formulations since magnesium has to be bound to something, and that some are better absorbed than others. The new one I have is magnesium lysinate glycinate chelate that is supposed to be high absorption. I'm interested to know what the lotion is and how well it's absorbed through the skin.

    SpookiesMom, I'll look into the Effexor if the Femara isn't any better. I have had heard that it is good for decreasing hot flashes. I'll do what I have to, but I am loathe to start any more medications. Between my prescriptions and supplements I feel like a walking chemistry experiment! It seems like every time I see a new doctor they want to put me on another drug.

    Thanks everyone for the advice and encouragement. Having women to talk to that have been through it is such a blessing.

  • cindyny
    cindyny Member Posts: 1,326

    Whatjusthappened- I'm now taking generic Fosamax to stop from getting osteoporosis. A pill to off set the side effects of Anastrozole. Osteopenia was discovered in June, 15 months of taking Anastrozole.

    I too am afraid if my MO ever said to take a vacation from the AI, I would never go back on. 3 years 3 months to go, ugh.

  • ingerp
    ingerp Member Posts: 1,515

    Re: magnesium dosage, the directions on my 100 mg magnesium glycinate say to take two pills twice a day. That sounded like an awful lot to me so I take one in the morning and one in the evening. I know I've occasionally gotten leg cramps on a night I forgot to take the evening dose.

  • missouricatlady
    missouricatlady Member Posts: 894

    imageI went back through my messages and this was what someone recommended to me. I haven't used it, and I'm not sure what the doctor would say about it, perhaps you could ask your doctor his thoughts. A friend on here recommended this though. Best wishes to you. Everyone is different. One of the girls I work with says that Thera Works they advertise on TV helps her, I have not tried that one.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    A friend on another forum says the roll on, or spray mag is better absorbed. I bought both a while back for DH and I. Neither of us noticed any difference. It was pricey, got it from GNC. I’m doing well with the gummies. He turned out to have bone Mets, probably why didn’t help him.

    We are all different so it may help you. Just be aware too it could have a laxative effect.

  • missouricatlady
    missouricatlady Member Posts: 894

    I wonder about that sometimes, Spookiesmom, the Perjeta causes diarrhea too. Flip a coin!

    Thank you for that info too, good to know!

    Loopy

    Edited to add: Your husband has bone mets, I'm sorry. Hugs, so sorry to hear that.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    CindyNY, sorry to hear about the osteopenia. I understand your frustration about having to take Fosamax. I really deliberated about whether or not I wanted to take that Prolia shot, but I already had osteoporosis before I ever started on the AI's and finally gave in. You're getting close to the 2 year mark though, so that's an accomplishment. Hang in there!

    MissouriCatLady, thanks for the information on the lotion. I'm going to do some research on how well they work.

    SpookiesMom, I'm going to look at the roll-on and spray stuff too. I didn't even know they made such a thing. I've got to start being careful about where I spend my money supplement-wise. They do add up! I am so sorry to hear about your husband's bone mets. I'm terrified of bone mets- I actually have an MRI scheduled to look at some wedging in my spine. My MO thinks it's probably just arthritis, but it scares me anyway.

  • Stellawt57
    Stellawt57 Member Posts: 65

    Hi all, I'm listing all of the supplements my Integrative Dr. has me taking: CoQ 10 100 mg 2x daily- am and pm (leg cramps) magnesium glycinate 120mg 4x daily- 1 in am, 2 at noon & 1 in pm (leg cramps, constipation, anxiety/emotional issues, musculoskeletal, and neurocognitive function) curcumin 2250 mg total per day- one in am, noon, and night (joint pain), Vitamin D3 5000 IU 2x daily 1 in am and 1 in pm (bone and muscle health) calcium 1200mg 1x daily noon (bone health and help reduce osteoporosis) and liquid B12 5000mcg 2x daily in the am and pm (anxiety/emotional issue). I also eliminated gluten from my diet to help reduce inflammation which can cause joint pain, but the greatest intervention that has helped with the joint pain, anxiety, and emotional issues are 64+ oz. of water daily, exercise 5x weekly, and acupuncture. Initially I had acupuncture 2x weekly after 8 weeks I stared treatments 1x per week for 8 weeks, and now I have treatment biweekly. Luckily my health insurance pays for 24 treatments per year. I started taking most of the supplements and acupuncture in May. I hope this helps those who are experiencing some of the same SE.

  • giggs
    giggs Member Posts: 19

    Hi Everyone, I haven't been on the forum for awhile because I get so overwhelmed with what to do. I'm on Anastrozole. I was on it for a month, went off for about 6 weeks, and my MO was ok with that. Now I've been on it for 2 months. I'm tired. I have about half the energy I used to have. I get overwhelmed easily. Does it eventually get better? My memory is affected. lol. My husband says it's cuz I'm 68, but it's not. My blood sugar is elevated and this is new. I'm wondering if it's the drug. Anyone else have this issue? Or any of them and they went away? Thanks so much.

  • mactaz
    mactaz Member Posts: 592

    Hi giggs, it does appear the the SE are really dependent upon each individual but I do seem to see a common thread that the longer you are on it, either the SE less or we just get use to them.

    Me personally, I think it has gotten better. I have now been on anastrozole for 8 months, I took a three week holiday after month four because of joint pain and the blues as I call it. But I did also have a foggy memory and leg cramps. After the three week holiday I’m much better, been back on it for four months, and have good days and bad days - so far good outweigh the bad. I take Tylenol and tramadol on the bad ones. I exercise every day and drink lots of fluids. I walk 5 miles 5 days a week and 2 miles the other two days. I am going to add some stretching and strength exercises in because I think that will help. The good news is I haven’t felt the devastating blues or mind fog. Have some leg cramps but so far nothing I can’t deal with, I just drink 2 ounces tonic water before bed.

    I also take lots of supplements along with my anastrozole. I’m on Fosomax because I have osteoporosis, I also am on Synthroid due to thyroid, then I take vit B3, calcium with D, tumeric/curcumin, alpha lipoic acid, and Zyrtec. I was taking glucosamine but pills are to big to swallow.

    Wish you the best, hang in there and I hope th8ngs get better.
  • hikinglady
    hikinglady Member Posts: 625

    giggs My MO told me, when I started my AI, that if any side effects were too terrible, he'd put me on a 2-week 'vacation' which often 're-sets' things and next time is easier. Or, we'd try another version/brand. All of my difficult side effects got much better/easier by 3-8 months on the medication. I still have some joint pain and stiffness and very mild hot/warm flashes, and a few other things, but it was all much more difficult the first 3-6 months than later on.

    Energy: I definitely have a bit less energy, so I have to pace myself to do complex or physical things. Drinking a lot of water every day and 1 hour of exercise daily has helped me feel better in all ways.

  • cindyny
    cindyny Member Posts: 1,326

    giggs- I second what HikingLady said. First few months were rough. By month 6 or so I think things leveled off. 3 years & 3 more months to go, I'll be glad to see the last of this little white pill.

    I've also started the generic to Fosamax, I've only taken 1 pill so far so I can't remember the name yet. A pill to offset the SE of the AI attacking my bones. I haven't noticed any SE with it, yet. LOL See, I can still laugh!

    Hope everyone's holiday was enjoyable. We leave tomorrow for the drive from NY (upstate) to Texas, just ahead of a snowstorm. ONWARD!

  • annc2019
    annc2019 Member Posts: 93

    I am not sure what this pill is doing to me. I have a few new pains, one in the left groin since September and a weird pain in lower back or inside (a bit hard to localize) when I move a certain way and now pain in my right rib making it hard to sleep. I had this pain in my rib six months before my BC diagnosis so I had an X-ray and they said it wasnt fractured. It eventually went away and is now back. What is coming from the pill or radiation not sure. My daughter told me I look really hagard, cheeks sunken in dark circles underneath my eyes. I appreciate her honesty.I said, this is what estrogen loss can do to you. I have a small, long face so it does look more hagard.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    That's very interesting that many of you said your symptoms improved after being on anastrozole for a longer period of time. I took it for about 5 months before I started my break. Makes me wonder if I am giving up too easily on it. Of course, my MO didn't really leave it up to me, he said he wants to put me on something else.

  • Taco1946
    Taco1946 Member Posts: 630

    Whatjusthappened - it's ALWAYS up to you and not MO. But I would encourage you to take a little break and try something else. I switched from anastrozole to letrozole at about 6 months. Hair is thinner but my mood is much better. I have also taken a couple one week breaks from the letrozole and have had diminished SE when I started them again. My total knee replacement is more painful than I expected five months later and I was about to give up on the AI's because they may slow down healing but then I lost 3 friends in 10 days to cancer and decided I would just up my PT.

    Although I was already retired when I got BC, I have changed my priorities. Spending more time with people I enjoy and giving volunteer time to causes I believe in. I have also learned to say no. I do tire more easily and can't race from one thing to another to another like I used to. And that's OK.

  • giggs
    giggs Member Posts: 19

    Thank you all for the replies. It helps to know it's not my imagination. And I also think I look haggard and tired. And I am tired. Sometimes it scares me how tired I am. I'll hang in there a little longer and see what happens. I can't imagine feeling this way for another 4 and a half years!


  • Bjbj
    Bjbj Member Posts: 3

    I am taking anastrozole and after 15 months on it went from very normal bone density to osteopenia. Oncologist first recommended Prolia. I consulted an endocrinologist that specializes in bone loss as a result of cancer treatments. He says the loss is probably a combo of the AI and the fact I went into menapause right before my diagnosis about 2 1/2 years ago. He recommends IV Reclast once a year. He would be ok with me doing fomax once a week but prefers the Reclast saying it is going straight to the blood so higher absorion rate. Initially I refused all the above bone meds as there are studies saying you will not get osteoporosis after 5 years of AI if you start with normal. Bone density . But the dr explained if that is true he believes I will get osteoporosis in the long run because i will have liost so much bone while on the ai. So any suggestions as to which bone meds to use? I am 55. I am scareod of SEs!

  • hikinglady
    hikinglady Member Posts: 625

    Bjbj I have a Zometa (Zoladex) infusion every 6 months. My oncologist explained, when he proposed this plan, that it is protective against bone mets, as well as protective for bone density. This makes it a good choice for breast cancer patients. I was diagnosed w/ osteopenia before starting Arimidex, so a bone med was definitely something we had to consider, right from the beginning, since AI's do, typically, cause more bone loss. I really have to be on my AI for 5+ years for best possible statistics on recurrence, because of various aspects of my path. report and diagnosis.

    There are lots of threads about doing well on AI's, and about bone medications/bisphosphonates on this community forum, where people share their experiences.

    If you feel comfortable sharing your DX and TX with your information set to Public in My Settings, it will show up below your post, and we can see what you've been through, and where you are in your treatment journey.

  • cindyny
    cindyny Member Posts: 1,326

    Bjbj- my MO takes Reclast and recommended it for me. I had a dramatic bone loss in hip "neck." And I work out 5x a week, take calcium & D, eat high calcium. Only option if I didn't want more bone loss.

    My endocrinologist started to set me up for it but we were leaving for "snowbird" trek - NY to Texas, Texas to FL. So I opted for Fosamax generic until I'm back in May.

    Endocrinologist office told me with Reclast and osteopenia, I'd only need a shot 1x every 2 years, instead of yearly if I had osteoperos.

    Good luck to you! We do what we have to do.

  • Bjbj
    Bjbj Member Posts: 3

    Thank you for your response. I just added my diagnosis and treatments.

    I guess I am wondering what experiences anyone has had with Reclast and side effects from it. Also, after getting an opinion from both my oncologist and and an endocrinologist that specializes in this, is it crazy to want anther opinion specifically on how to treat my osteopenia? I did decide I am not willing to go off the Anastrozole. I feel like when I talk to these doctors and am so concerned about side effects they are saying this is not something to worry about there are much worse things. While of course there are much worse things, I just feel like they minimize possible side effects. Ugh.

  • orangedaisy
    orangedaisy Member Posts: 129

    StellaWT57 has your Integrative Doctor ever said anything about the study that cautions people with ER+ breast cancer not to use Curcumin/Turmeric? Some studies say Curcumin is similar to chemo prevention drugs against ER+ cancer, but this one showed it can drive the progression of ER+ tumors.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53545...

    Turmeric and Collagen are the two things that help my joint pain best. Collagen is another iffy supplement for cancer survivors because cancer cells are thought to travel to other parts of the bode (metastasize) on collagen strands. I've stopped the collagen except occasionally, but I haven't been able to bring myself to give up the Turmeric. I would prefer not to take Glucosamine because Type 2 runs in my family, and my glucose runs on the high side of normal. It seems everything that works could potentially cause a recurrence.

    I also take MSM, tart cherry, Magnesium Glycinate and Fish Oil to try to help with the joint and bone pain. Some people say Claritin also helps, but Anastrozole already dries me out everywhere. Claritin on top of that makes me miserable!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Bjbj, I took Fosamax for 5 years - all the time I was taking anastrozole. I had no problems with it. I was osteopenic when I started and not change at the end. My current PCP (actually NP) said that there is no benefit of Fosamax beyond 5 years. It also is thought to prevent bone mets. Everyone is different and what is appropriate for one person may not be for another. I can only tell you what worked for me. Good luck making your decision. You probably should take something to prevent any further damage to your joints.

    HUGS!

  • josieo
    josieo Member Posts: 140

    Hi Bjbj,

    I had a Reclast infusion for the first time this summer. I had a good discussion with my oncologist about the various products and their benefits. He recommended Reclast and I agreed. Infusion starts with some fluid to hydrate your veins, then about 1/2 hour for the Reclast. I was given Tylenol to take as I was leaving, and told to take Tylenol as needed for an achy feeling during the next 24 hours. That achy feeling would start when the Tylenol started to wear off, but when I took another one it would quickly ease. The potential achy feeling ended the next day. No noticeable side effects afterwards. Personally, I felt the benefit far outweighed the minor ache.

    Best wishes to you

  • missouricatlady
    missouricatlady Member Posts: 894

    Orangedaisy, thank you for the information. Anastrazole dries me out too.

    Pontiac Peggy and JosieO, thank you for the information too. Time will tell if I will need to look at these drugs, it is good to know a little in advance. I keep seeing the Prolia commercials. I wonder if they all cost thousands of dollars like Neulasta.

    I woke up at 1:30 with leg cramps and couldn't get back to sleep. Do you think Melatonin would help with that? I hate to add to my list of drugs though. Supplements add up. Best wishes to everyone today, I may be looking for a little chocolate about 2 pm to stay awake at work. A brisk walk would be better.

  • Bjbj
    Bjbj Member Posts: 3

    Thanks for the info on your experience.

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