Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

For Arimidex/Anastrozole new, past, and ongoing New

Options
1235789

Comments

  • doxie
    doxie Member Posts: 700
    Options

    I'm one whose arthralgia symptoms have gone down over the years. I am now in my 5th year of AIs. I started on Arimidex/anastrozole and am now on exemestane/Aromasin.

    Over the years I've had sever trigger thumb, ending with surgery on my thumb. Also had less serious symptoms in my other thumb, fingers and toes along with inflamed joints. This has calmed down in the last two years. I've also gotten arthralgia symptoms in my lower legs and feet. Except for February and March in the last two years, these have calmed down and are easily controlled with spotty use of Aleve. Even my severe dry eye and vaginal discomfort are under control. If the MO told me I needed to continue treatment beyond 5 years, I could manage, though I'd rather not.

    I make sure I get plenty of exercise, keep my Vit D levels high, and started taking flaxseed oil pills for my dry eye. I've seen even more relief since adding the flaxseed oil, though that may be coincidental. I stopped eating gluten, but I'm not certain it has made any difference on arthralgia since I had low intake anyway. It helped in other non BC related symptoms.

    I've also had troubles with bursitis in my hip, but each time I was able to change my exercise to alleviate and prevent it from reoccurring. I have no idea if the AIs made it more likely to occur, or just aging.

    There is hope. My first three years on AIs were trying and I had to push myself to stay on them.

  • brutersmom
    brutersmom Member Posts: 913
    Options

    I am still struggling with the burning in my hips and thighs. I skipped my anastrozole yesterday and today because the pain had become too great and even the touch of my clothing was hurting. Advil helped a little and it was beginning to burn when I walked. It is better today. I see my regular Dr. today. I am hoping that this will resolve in a couple more days and I can start the anastrozole again. I tried Femera a while back and that triggered sever night sweats and vaginal dryness that have been slow to resolve and the carb cravings were ridiculous. Not sure what to do. The burning in the hips and thighs (no stiffness) was really unbearable.

  • lemint
    lemint Member Posts: 76
    Options

    Hello everyone. I am starting arimidex very soon and I'm very nervous. I was just wondering if anyone didn't have severe side effects. I'm really worried about weight gain, hair loss, skin changes and joint pain. Any insight?

  • Smurfette26
    Smurfette26 Member Posts: 269
    Options

    Wishing you minimal side effects Lemint. I originally started on generic brand Anastrozole but within a few months I was almost crippled with muscle and joint pain. I had a break for a couple of weeks and have now switched to brand name Arimidex. The improvement is astounding.

  • jnu3
    jnu3 Member Posts: 56
    Options

    Lemint

    SE's are not a determined lot of life. I am on Anastrozole (generic) which I started March 19, 2016 the day after I finished my radiation. I am having "hot flashes", but I had those when I initially entered into that wonderful world known as "menopause." They were gone BUT now they're back. I can survive.

    I have not had any joint/muscle pain; not that I would related to Anastrozole. I take my dose in the am when I first get up. I noted in several previous posts several recommendations: stay active - when you first get up in the morning stretch (I do 10 minutes - 2 miles on the stationary bike). I know that I could be doing more and may be with the summer months I will. I am one to know what joint and muscle pain can and do; I am going to have my right knee total replacement June 21 (left was May 2012). I have joint pain; but I know exactly where my joint pain is from. I will post after my surgery and recovery to see if I have any thoughts related to my "hormone smashing" medication.

    As for weight gain - I was worried. In fact that was my greatest concern having lost 60 pounds the year and a half before the BC. I had put on 15 - 20, but that is not because of Anastrozole. Watch what you eat; stay active. I am working with weight watchers and know that sensible eating can outweigh any potential weight gain with determination.

    There is life and living after BC; just remember: Take a deep breath and breathe.......

  • janett2014
    janett2014 Member Posts: 2,950
    Options

    I have been on Anastrazole for two years. I started with the Accord manufacturer. I had some pain and stiffness in both feet so after reading about it on these boards, I switched to Teva manufacturer. To do that, I called my MO's nurse to get a new prescription stating "Teva only." She never even questioned me about my reason for switching which made me think that it's not an unusual request. It did seem to help the pain.

    I also have had knee pain on one side, but how do I know if it's caused by the medication or if it would have happened anyway? My orthopaedic doctor says I definitely have arthritis in that knee. In any case, my knee is better with medication and physical therapy. My MO says that since the problem is one knee and not both, then it's probably not the Anastrazole.

    I was having hair thinning issues for about a year before BC. I began seeing a dermatologist at that time, and starting Anastrazole a year later probably slowed down my progress with my hair. I'm doing pretty well in that area now though. My hairdresser assures me that my hair loss/thinning is really not bad at all compared to others that she sees. The dermatologist has me on several supplements, a prescription medication for blood flow, a prescription lotion for bedtime, special shampoo and conditioner in addition to a prescription shampoo. He also does injections in my scalp every four months or so. I think that's all working.

    Regarding weight gain, I think that's all on me. It's a struggle, but I don't think it's more of a struggle since I've been on Anastrozole.

    Edited for a typo.

  • jnu3
    jnu3 Member Posts: 56
    Options

    SE's or no SE's: I have to say reading the comments posted, scared me. I was not looking forward to taking any medication that was going to cause SE's that may be with me for more than 10 days. I can say from my heart - that if I were to have to take a medication that would cause side effects - I WOULD NOT. That is not even a decision that I would hesitate to make. I was told there were "possible' side effects and that provided a "maybe not" and I could approach it from that point. I am not experiencing any side effects that I would count as actual side affects. I will look to the positive and hope that we can provide a hopeful outlook for all new comers. Positive thinking can make a diference.

  • Kaneli
    Kaneli Member Posts: 65
    Options

    I just started Anastrozole yesterday. So far no side effects! (That was a joke :). I know it takes awhile until the SEs begin. If they do. I am doing many things to try to ward off the potential SEs. Exercise and diet. My multivitamin has 1,000 IU of Vit D and 500 mg of Calcium, 50 mg of magnesium. Is that enough of those things? Also, a probiotic and daily Tumeric with black pepper. Claritin for allergies as needed ....hydrating and green iced tea throughout the day. I have also been taking celebrex for a knee issue, and I'm wondering about discontinuing that now. I was taking it while I was on vacation in Italy and I knew I would walk a lot. It really helped. If I start getting the joint pain, I'll try the glucosamine, with sulphate....what else am I missing? I cannot believe I'm popping all of these supplements now, along with atorvastatin and lisinopryl. Oy vey! I've only seen my MO once, and he prescribed the anastrozole. He made no mention of Zometa in my future. My Bone Density scan is excellent....maybe that's why. Does everyone who takes AIs end up getting some type of medication or infusion to protect against bone loss? Maybe that's something he'll spring on me when I have my next appointment, which will be in August. Anyway, I'll keep hoping for the best, and remain optimistic. Any comments or remarks would be helpful. Good luck to all....I really appreciate this forum!

  • Grazy
    Grazy Member Posts: 231
    Options

    Hi Kaneli - welcome to the Anastrozole club :) What?! No side effects yet? haha Every day I like to say "so far, so good" and wonder how longer that'll last! Sounds as though you're doing all the right things so far. My MO had me start the glucosamine the same day as the AI, but who knows if will make a difference in the long run.... every MO has their own preferences - some prescribe it, some don't. Mine told me that she doesn't even prescribe Zometa any longer specifically for bone loss as, in her practice, she rarely see fractures associated with an AI - although bone loss prevention is certainly an added benefit of the drug. She says she now prescribes Zometa solely for the prevention of early breast cancer recurrence in post-menopausal women, as studies seem to support that that benefit. I assume if you're on an AI you're post-menopausal so you could ask your MO about it and see what he/she says. My MO said there was no huge urgency in starting it which is why my first infusion is later in August after vacation and other family commitments are over with, and my second will be in February, which is another down time for me.

    Will be good to keep in touch with those beginning these lovely drugs. (I've been on Arimidex for a little over 7 weeks now - I had stiff ankles one morning upon waking, but my husband reminded me that this has happened to me before on more than one occasion :) I'm hyper-alert, I guess. I do notice that my hands are just the tiniest bit achy at times, but again - is it the AI or is it that I'm 56, lol. Time will tell! Oh, one side effect I DID have was the return of hot "flushes" as opposed to "flashes" (they lasted longer and were more whole body) -- I've been menopausal for about five years and have had my share of hot flashes for most of those years, but they had just started to subside. SO, they did return after I'd been on the AI for a couple of weeks, however, I haven't really had any for a few days. The body is adjusting, clearly.

  • barbe1958
    barbe1958 Member Posts: 7,605
    Options

    Why take Zometa if not for bone loss? If it prevents a recurrence, then why bother with an AI?? I'm so confused...I'm on Arimidex until it stops working. My MO said he hopes we "get a year out of it" and then I'll have to go on to IV chemos. But, if it keeps working, I'll be on it for life.

    And no, I don't think positive thinking makes anything better. If so, I wouldn't be in this kind of pain! I'm a very happy person and some people are stunned to know what I'm going through. Even when I have to use my cane or walker I'm still upbeat (I put sparkly smiley faces on my walker) and it doesn't really help me. It does help people who have to be around me, though....Winking

  • Grazy
    Grazy Member Posts: 231
    Options

    barbe, I meant Zometa helps prevent recurrence (in early bc's), just as AI's help prevent occurrence - each is just another layer of protection to the surgery and radiation I've had - all of those things are positive things for someone like me who recently had a very early breast cancer. I'm sorry you're in so much pain all the time, it must be difficult to put on a happy face when you just don't feel like it.

  • jnu3
    jnu3 Member Posts: 56
    Options

    All our supplements - each to their own. AM - Anastrozole; 1 probiotic; 1 CoQ10 - 100mg; 2 Methyguard (B complex vitamin) and Caltrate 600/800 calcium chew. I need to be more committed but 10 minutes (2 miles) on the stationary bike before coffee and shower. I need to add some additional exercise and/or motion but with the pain and discomfort in my right knee, that will have to wait until after right knee replacement surgery and into my physical therapy. PM - Atorvastatin 10 mg; 2 2000 D3 (spring; 3 in winter) and another Caltrate 600/800 calcium chew. I hit 90 days on Monday, June 6, 2016. the little engine said: I think I can, I think I can .....keep chugging along.

  • iammax
    iammax Member Posts: 3
    Options

    Been in a depression for long time. Had mastectomy December 16, 2015 and kicked out of the hospital on 2nd day and sent to hell hole where I had to stay the night. That must be when the depression started. I was lucky to be able to stay with a friend before I returned to my home town The MO put me on Letrozole, which costs a bloody fortune and originally made me feel dizzy and nausea. I am still taking Letrozole each night, but couldn't afford it for a week, but am on it again. I have noticed that I have difficulty getting up from a sitting position. Get tired quickly and find myself lying in bed watching TV instead of doing something more productive Have developed pain in my legs besides the fact that they feel like lead when walking. My knees have developed pain and will strike sharply without notice. Not sure if it's Letrozole or aging. My chest looks like a road map and sharp pain comes intermittently. The surgeon would never be a good tailor. I have trouble sleeping and wake up one or two times a night. I'm now taking a half sleeping pill and the other half when I return to bed during the night. I'm now an addict to them because I cannot fall asleep by myself. Also, was told to take Fosamax once a week to help slow the onset of osteoporosis which the Letrozole will cause. That also is an expensive drug. It's troubling that if breast cancer doesn't get you, the after treatment will. However, I'm still fighting because I'm stubborn and my dog needs me which is a good thing, because I need to walk three to four times a day which I'm sure I need to do. Like now.

  • jnu3
    jnu3 Member Posts: 56
    Options

    iammax - what area are you from and what were your diagnosis. You can't let this beat you down.

  • Jennie93
    Jennie93 Member Posts: 263
    Options

    iammax - are you in the USA? Letrozole is about $5/mo. and fosamax (generic) is about $10-12/mo. here but you do have to shop around, different pharmacies have widely varying prices even in the same town. Crazy, huh?

    If the letrozole is making you miserable maybe your doc would try switching to something else. I started out on tamoxifen, couldn't handle the SEs, switched to anastrazole and it was much better for me. Worth a try?



  • brutersmom
    brutersmom Member Posts: 913
    Options

    Kaneli You might want to increase you Vitamin D to 2000 units. My MO said that is the minimum you should take while on Hormone Therapy and it needs to be D3 not plain D. That was before my D3 levels and bone density scan. He said it could change if my Vitamin D test came low but my levels were fine in the beginning. My bone scan was good as well. The Calcuim amount is also what I was recommended and I was told no more the 600 mg.

  • jnu3
    jnu3 Member Posts: 56
    Options

    Will begin 4 months anastrozole Saturday; hot flashes seem to be the on and off norm.

  • B123
    B123 Member Posts: 239
    Options

    I have been on arimidex X 4 years, is it normal to have nausea every so often? I also have pelvic pressure off and on, tested for UTI, negative. I had a full hyster 3 years ago.

  • dtad
    dtad Member Posts: 771
    Options

    B123....Hi there. It could be interstitial cystitis. You get all the symptoms of a UTI but don't have one. One of the causes is lack of estrogen. So yes another SE of anti hormone therapy :(

  • B123
    B123 Member Posts: 239
    Options

    DTad, thank you.. Figures.. Ugh! Who do I see for that or is there anything I can do for it?

  • Seedsally
    Seedsally Member Posts: 141
    Options

    B123 I have been on anastrozole (generic Arimidex) for 3 weeks now and I started having nausea at odd times just the past few days. I've read that side effects sometimes take a few weeks to kick in.

  • jnu3
    jnu3 Member Posts: 56
    Options

    Well I feel blessed that hot flashes (emphasis on the HOT) appear to be the SE of choice. I am watching my diet and am bound and determined not to gain weight. I will really have to watch that over the next six weeks as I recoup from total knee replacement next week. That lack of normal movement could set me up for a few extra pounds if I don't take care.

  • Kaneli
    Kaneli Member Posts: 65
    Options

    Hey everyone! Well, I have taken Anastrozole for 13 days now....so far so good. I am trying to be diligent with exercise, diet, etc. I was a little sore for a couple of days, but that may have been jet lag, increased exercise, or any number of things. I will note that I am feeling a little bit of non specific anxiety. I hope it's not related to the hormone therapy, but we'll just have to see,

    Brutersmom, I was thinking about increasing my vitamin D3 to 2,000 IU. I think I will do that....I do live in Florida, so I get a lot of sun, (I'm not a sun worshipper, but just walking around outside at this time of year) Still, I think you're right. Another pill to add to my daily regimen! Yay! I need to check on my Calcium amount. You said 600 mg. Sounds good to me. I will have my annual with my primary next week. She always checks my Vit D levels, so I will be interested on what those tests will show.

    Anyway, guarded optimism on the Anastrozole, but I know I'm still early in the process so, we'll see!

    Hope everyone is doing well on this uninvited journey!

  • jnu3
    jnu3 Member Posts: 56
    Options

    My RO/MO advised that I can take to Caltrate 600/800 chews twice a day. So I get 1200 mg of Calcium and additional 1600 of D3.

  • jnu3
    jnu3 Member Posts: 56
    Options

    Damn as I sit here in the cool, sweating......


  • lemint
    lemint Member Posts: 76
    Options

    I just started anastrozole 6 days ago. To early to notice any SE. Will keep up with this thread and post if and when I do. I'm so incredibly nervous about this drug. So strange considering everything else I've been through ( surgery, chemo, radiation) 😏

  • jnu3
    jnu3 Member Posts: 56
    Options

    Think positive and look forward with a smile. We have already undergone a lot and you have a lot of support.

  • lemint
    lemint Member Posts: 76
    Options

    Thanks jnu3. That's why I like coming here on these the boards. You all know exactly what it's like and are going through it as well.

  • Kaneli
    Kaneli Member Posts: 65
    Options

    Hey Everyone! I started Anastrozole on June 5th. So far, so good. I am noticing some mild hot flashes, but that's all. I am working out pretty regularly as per the advice of people on here to help with joint stiffness/pain and so far I am not experiencing any of that. Also, I'm watching my diet and trying to lose some weight before my daughter's wedding, which is not until March. So far, I'm not gaining any weight, and it seems that I am slowly losing weight, but it's slow going, for sure! I know it's early in the process, but I'm keeping my fingers crossed!

  • Grazy
    Grazy Member Posts: 231
    Options

    Hey Kaneli - this just popped up in my Favorites - I haven't really checked in with this board in a while!. Welcome to AI-land! I've been on Anastrozole since mid-April and while I had a resurgence of hot flashes for a few weeks after starting Arimidex (I'd had them already for a few years but they had subsided for the most part), get them very rarely now. I really don't have any symptoms at the moment. I do take calcium and vitamin d3 along with glucosamine sulfate, the latter two supposedly help with joint pain, so either they're working or I'm just not experiencing joint pain! Wishing you best with on this drug! Will be interested to see how you do.