Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

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

1161162164166167607

Comments

  • Redheaded1
    Redheaded1 Member Posts: 1,455

    Patoo---Thank you ---you are so right abut fillers--- I have some drug sensitivities and they know it isn' the drug, but the fillers.  No way to know which one it is.


    BB- did I read that your doc wanted a CT scan for weight issues?  Never heard of that one before----wonder what they thought it would show???

  • Sharon1942
    Sharon1942 Member Posts: 96

    Bosom keep us posted on the Arimidex. I will ask for that instead of generic when I go see my MO in July. 

  • stage1
    stage1 Member Posts: 285

    Red, thanks for the explanation.  I am post menopausal...but Tomoxofin was offered.  I might look into getting it somewhere else, cause Kaiser did not offer Arimidex.

    As far as the scans, I had a bone scan where they inject you with dye.  Showed all my osteo arthritis, but they were looking for cancer due to my pains.  That was negative.  Now I am getting a CT 16 slice, I think it is like layers that they can see.  I get that on Friday.  I have to drink 32 oz of some liquid that I brought home from the pharmacy and I think besides that they will inject me again. I had to have a kidney blood test prior, in order to get the dye. I guess it is hard on the kidneys.  

    BB, so I think the bone scan is not CT.

  • lago
    lago Member Posts: 11,653

    BosumBlues CT scan of what? I assume lower abdomen. Bone scan is different. They inject you with dye for that one. There is also a dexta scan used to see if your bones are thinning (osteoporosis) which is also different from a bone scan.

    Stage 1 There might be a reason why you were prescribed Tamoxifen instead of Anastrozole, Femara, etc. even though you are post-menopause. Many insurances won't cover the brand name (Arimidex) if there is a generic.

  • tinat
    tinat Member Posts: 2,235

    Only read the following if you need something to help you sleep :)

    Bone scans and PET scans are Nuclear Medicine procedures which use radioactive tracers (not dye) to look for areas of increased or abnormal cell activity which results from arthritis, healing fractures, infection, cancer, etc.  The radiation exposure comes from the injection, not from the machine.

    DEXA or Bone Density scans are specialized X-Ray procedures which specifically measure the density of the bones and look for osteopenia and osteoporosis.  No injection is given.

    CT scans are X-ray procedures which are viewed as cross-sectional slices.  An IV "dye" or contrast material is sometimes (but not always) used to demonstrate blood flow to a specific area.  Oral contrast is sometimes also used to outline the GI tract.

    MRIs use a pulsed magnet to create images without radiation.  IV "dye" or contrast is sometimes (but not always) used to outline blood vessels and show circulation.

    Just to make it even more confusing, there are now all sorts of amazing hybrid machines which combine some of these modalities to give even more specific and detailed images.

    OK, time to wake up! 

  • ohmyohmy
    ohmyohmy Member Posts: 1
  • stage1
    stage1 Member Posts: 285

    Lago, I just changed from Anostrosole because of my bones, to Tomoxofin.  Kaiser did not offer Arimidex, but I think I will like Tomoxofin better for bone pain and osteopenia.

    Tina, thanks for the info.  Are you in the medical field?

  • doxie
    doxie Member Posts: 700

    Sharon1942,

    The hand doc took one look at my trigger action and prescribed a cortisone shot.  It was not at all painful because he first gave me lidocaine and then the shot which also had a pain killer.  It was wonderful to instantly no longer have pain.  A week out, still no pain in the base of my thumb.  A little in the knuckle closest my finger nail.  That joint is still swollen and triggers in the morning.  He said if in a month I still had a problem, then surgery.  He can only give me one more shot or risk destroying my tendon.  

    I have mild truncal and upper arm LE along with it in my thumb.  The shot didn't cause any flare or infection.  I'm leery of surgery for this reason, but would take the risk to be pain free.  

  • Vadre
    Vadre Member Posts: 159

    Wonderful Ladies!

    I was diagnosed with Stage IV three years ago. I had my ovaries removed ASAP. And began taking Arimidex immediately. I also have monthly infusions of Zometta (to help with bone strength issues).  I did have some SE with the Arimidex, joint pain, muscle pain, lack of energy. While some days were worse than others, the SE were generally managed with pain meds, sleep & exercise. Over the last 6-8 months I have seen a dramatic increase in my pain and lack of energy. It has been so hard that I think I've actually been depressed. 

    The SE got to the point that they were really getting in the way of living my life. My MO increased my pain meds with minor success. I have been SO unhappy!

    One day I decided to look  on BC.Org for information on Anastrozole because my Pharmacy switched me to this around 6 months or so ago. I am so relieved to see that this might be an explanation for the sudden in crease in my symptoms!  The more I've read the stronger my conviction is. Many of your posts could have been written by me!

    I see my MO next week. She is generally very receptive so I anticipate coming away with a Rx for Arimidex again!  I wouldn't have known to look in this direction or had the conviction to follow through if it hadn't been for your willingness to share your experiences so openly!

    Thank you so much!!  I'll keep you posted!

    Virginia

  • Holeinone
    Holeinone Member Posts: 1,418

    Lago is correct...Arimidex is very expensive through the pharmacy...My insurance does not cover it, only Anastrozole. I bought that for $6.50 a month from Costco, for 2 months.

    I signed up for the online order, & bought the brand name, "Arimidex" direct for $40 a month. Your MO has to fax in the prescription. So , I am spending an extra $ 400 year to get the name brand. Is it worth it? I have no idea, I really doubt it, but my dx is scary, stage 3. I figure for the first 2 years I will bite the bullet and spend the $...

  • tinat
    tinat Member Posts: 2,235

    I just passed the 3-yr. mark on anastrozole.  I have been doing everything I'm supposed to do and things seemed to be holding steady.  In the past month or so, however, I've been having lots of new joint pain in my hands and feet with particular joints being very inflamed and tender.  Feels like my foot has a broken bone much of the time, but I know that can't be because sometimes there's really no pain at all.  Is this caused by depletion of the synovial fluid in the joints?   Anxious to hear what my MO has to say about it.

    stage1 - Yes, my background is in diagnostic imaging.  It seems on the various threads I visit there is often confusion between bone scans (Nuclear Medicine) and DEXA bone density scans (X-ray). 

    Best wishes to all! 

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Some hospitals (Dana Farber is one) are prescribing Tamoxofen for two years, then an AI for three.

  • lago
    lago Member Posts: 11,653

    TinaT So glad you found these boards. Now you know you're not crazy. Odd that we seem to be doing fine then boom 3 years later we are having problems. I'll tell you I really do feel so much better both physically and emotionally and its only been 4 days without it!

    BrooksideVT usually they prescribe that for women who were peri-menopausal or close and went into chemopause. They wait the 2 years to be sure they stay in menopause before they prescribe the AI.

  • Holeinone
    Holeinone Member Posts: 1,418

    Lago, glad you are feeling better, yesterday for about 4 hours, my forearm bone ached & felt like I broke it. Out of the blue...this morning my right arm, but not near as severe...

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Holeinone, I just noticed your report of PTSD.  Me too.  I tried celexa, then added ritalin, then dropped the celexa, then the ritalin.  Basically, I just had to wait it out.  I do not think arimidex affected the PTSD at all.  Anyway, I'm now a year out from rads and feeling fine, just griping about joint pain.  Oh, and also griping that my appetite (went away during rads, went away more when I started arimidex) is back.  And so are ten pounds.  Uggggghhhhh.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Just curious, are the pains bi-lateral? Mine aren't. 

  • stage1
    stage1 Member Posts: 285

    TinaT, yep, same for me, going along fine on Anostrozole for two and a half yrs, then wham! Major pains in legs and pelvic area and my bone scan showed many joint issues.  I guess it is osteo arthritis.  The MO said she could not comment on osteo arthritis because she only looks for cancer. She is adamant that Anastrozole is not causing pain. I changed to Tamoxofin. I am much better.  Glad we have you here to answer our questions on imaging.  Thank you...

  • iamnancy
    iamnancy Member Posts: 641

    Sharon - the shots are never the same .. a few times they weren't that painful and the relief was immediate.. the last time though it was incredibly painful and took almost a week for relief.. I was ready to get the surgery but now that the pain is gone, I am putting it off.. again. 

  • Holeinone
    Holeinone Member Posts: 1,418

    Brookside, 

    I got through 4 months of dose dense chemo, 3 weeks of rads & then fell apart. I have been on Zoloft for 2. 1/2  months now... I feel so much better, actually thinking I could go off the meds, my PCP said this is very short term, but talk about weaning off of it in the fall. 

    I still am struggling to eat....very weird, I know it's mental...I lost over 20 lbs, the month after dx, have not gained a lb since. This too shall pass..glad you are feeling well

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Holeinone, they told me the PTSD usually lasts about six months.  After six months, they said it can last up to a year.  It did. Then it went away. Or mostly away.  I'm currently working a four-hour day under a "reasonable accomodation."  Because I am in sales and have my own office, this translates into a 50% reduction in production requirement, with me working whatever hours work out that day. I might actually have a ten-hour day (formerly pretty normal), but then find I'm practically catatonic for two days.  It's all pretty frustrating, especially my difficulty with concentration, but I'm just happy to still have my job.  I may or may not make the 50% goal, but my stress level is a heck of a lot lower than if I hadn't applied for this accomodation. 

    I'm actually writing this paragraph for everyone who is having trouble with concentration, energy, focus, interest, and all the other horrid symptoms that keep us from being our former selves.  I would have self-diagnosed depression, but was lucky my RO's NP diagnosed the PTSD; it would have been so easy to call it depression, which behaves pretty similarly, but has a different umm, operating system, including a slow (maddeningly slow), progressive, return to normal.  In my case, it seems more normal-ish, but who's counting?

  • RhodyMMM
    RhodyMMM Member Posts: 278

    Interesting comments about PTSD. I finished my chemo about two months ago and yesterday I fell apart. I woke up in the morning so profoundly depressed I could not stop crying. For no apparent reason. It was a beautiful day, I am starting to feel like my old self (but for the aches, pains, and fatigue from the anastrazole) and it made no sense to me that I should be feeling that way. I felt sorry for myself that I had to keep working through out the whole process of surgery and chemo, but was glad for the distraction. I guess now that I am feeling better I wish that I did not have to work so I could enjoy some of the things I have missed over the last year. PTSD does make sense to me.

    Martha

  • dwill
    dwill Member Posts: 248

    denilyne,  My side effects on Arimidex (Anastrozole) was so bad, I could hardly walk because my bones and joints ached so bad, I also had the night sweats, hot flashes and severe depression and incredible exhaustion.  My blood pressure went from being stable with one med to extremely unpredictable high and placed on two other meds.   I ended up getting cortisone shots in my knees --that helped--found out I had osteoarthritis and osteopenia.   MO gave me a break for three weeks off the meds and I could not believe hot good I felt after the week--by the second week, I was happy again, my bones ache less--no hot flashes or night sweats and my libido came back.  I could not believe the difference.   But alas, I am back on the Anastrozole and for the last week I can not tell you how exhausted I've been and depressed I've been.  Just want to go home after work and sleep.  I know what you mean about losing it at work.  I have so little patience with the high jinxs of the teenagers, I teach.  Retiring in two years and as long as I am on these meds--I can't do it sooner.   Hope you are feeling somewhat better.

  • mema4
    mema4 Member Posts: 484

    dwill, You are ahead of me! I've been putting off Arimidex but guess next week is the time. I'm waiting to see how the insurance (I have early Medicare and secondary BC/BS) is going to handle payment for the brand name which is what my MO ordered. I have some neurological testing going on at the same time and my MO has approved, so no more excuses. I'm almost 2 wks out from the TE removal and implant placement so I'm still healing from that. Did way too much so now I'm grounded. Not at my best at all.  I'll just keep following you!

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Rhody - so sorry about the meltdown Sad.  The info posted about PTD vs depression is very interesting to me - I guess I had always considered PTSD just a delayed form of depression and it's good to know they are two different things.  Hang in there and discuss with your PCP soon if you can.  Wouldn't hurt to have something on hand to take if you get hit out the blue like that again.

    Dwill - you reminded me of something I figured out a while back because of what I learned on this thread.  I am much less patient with certain types of b*llsh*t at the office and am no longer as hesitant to express it as I would have been in the past.  I have always avoided conflict like it was the plague, but there is no more doormat behavior for me as long as I'm on this pill, I guess!

    Lostboob - following this thread can be very frightening for someone who hasn't started the regimen yet.  But please remember that many women have very few SEs from arimidex/anastrozole.  The ones that post here are the ones who DO have enough trouble to need to group support and sharing of information.  The rest of 'em are just out there living life.  Try to stay as open-minded about it as possible, k?  Don't go 'borrowing trouble' by assuming you'll have all sorts of horrible SEs.  If you do have SEs though, you certainly know where to come to talk it through, huh?

  • mema4
    mema4 Member Posts: 484

    Thanks sweet...I needed that. I am behind on taking this med. I should have started a month ago but I've just made excuses 'cause I'm a chicken. I've got to jump in there and get it started.

  • ruthbru
    ruthbru Member Posts: 47,704

    As sweet said, severe SEs are not the norm. Jump in and expect that you will do well. It is the biggest gun in our arsenal against recurrence, and we estrogen positive ladies are SO LUCKY to have this option.

  • lago
    lago Member Posts: 11,653

    lostboob I was on Anastrozole for over 4 years till I developed these emotion SE that seemed a bit too intense. I'm taking a month break. I really didn't have too much of an issue before that. 

  • nbnotes
    nbnotes Member Posts: 338

    lostboob -  Just wanted to piggyback on some of those saying that not everyone has side effects.There are also some like me who did get side effects about 3-4 months in, but after a few more months they went  away.  I would say about a year in is when I stopped and said "wait a minute, I'm not as hobbled  over, etc when getting up as I used to be."  Good luck!

  • nwest125
    nwest125 Member Posts: 69

    Is anyone having trouble getting Advantage insurance to pay for a 3 month supply of Anastrozole ?

  • lago
    lago Member Posts: 11,653

      nwest125 My insurance only pays for 1 month at a time unless I go through their mail order or their preferred pharmacy… and it costs more for the convenience.