For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Fearless, Welcome! First, I've had no problems with Arimidex. Some of the gals find that a daily regular (not decongestant) Claritin can help with the pain. I have general creakiness that comes with age when I first get up and when I took Claritin, it seemed to help that. However, it really didn't help with my allergies and taking Benadryl and Claritin probably is a no-no. I also do take Fosamax with no issues (already had GERD and still do). I have ostepenia but no history of osteoarthritis. I think I get another dexascan this fall. Every 2 years. Make sure you tell your MO about your concerns. Call him this week and see if he can suggest something for you. Also consider that you could be having problems with the fillers if you are taking a generic. Many of us find that the generic made by Teva doesn't have fillers that cause problems and if that doesn't work get permission to take the brand name. And it is possible that your pain may go away once your body adjusts.
BethL, it is possible your pain will get worse, but equally, it is possible it will go away as time goes on and your body adjusts. As long as Alleve works for you, I wouldn't worry. The only supplements I take are Vit D3 and folic acid. Too many allergies to add some of the natural stuff that many of you find helpful. Let the kids make fun of you! I'm alone so no one is going to say a word about my pill set up
HUGS!
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Hello all. I am on Arimidex presently, and for only a month, and I am finding the side effects to be daunting. Hot flashes are very bad, and joint pain, and stiffness. Also, I am having blurry vision (which, until a few days ago, I hadn't even attributed to the Arimidex). New research has shown it can cause the blurry vision. And weakness. I was diagnosed with Myasthenia Gravis, a neuromuscular disease, back in 1993 and have been mostly in remission (with no MG treatment needed for the last three years or so) but am wondering if I am relapsing. All of this after 4 - 5 weeks on Arimidex. I don't even have an appointment with my breast cancer MD until sometime in April. Oh yeah -- another big problem is insomnia. I have been awake since 3:15 a.m., finally got up at 4:30 because I was just lying in bed "wishing" I could go back to sleep. Then I decided to get on the computer. It is now 5:15 a.m., and I will probably just stay up. I am calling my breast cancer doc later this morning. There is no way I will last 5 years on this drug! Has anyone had a similar experience? Are the other AI's any better?
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Many women have switched to other anti hormones or other brands and do better..... Talk to your doc. Good luck and keep us posted
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emmiejohns.....you seem to be a mirror of what I experienced. I started on Arimidex and within a month I had trochanter bursitis in both hips, horrible constipation and woke up on a Monday with blurred vision. I made an appt with me MO at about the 10 week mark. I truly felt that I could not do 5 years of this, and I'm a pretty hard core person.. I went through chemo and rad and only took 1.5 days off work. but this kicked my A**. he stopped the arimidex and gave me a 6 wk break to see what happened. The vision got better, and the constipation went away. Unfortunately the bursitis was already there and stopping the med wouldn't make it go away. after 6 weeks he started me on aromasin. no change in the bursitis, NO more constipation (yeah) and a general feeling of being a bit better. certainly less SE than with the arimidex. just getting rid of the sever constipation is a bonus. I do use clonidine to help with the horrible night sweats and it is VERY effective. hang in there....there are options
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I started on Arimidex on January 10th. Right about the month mark, at the same time I started my radiation treatments, I started having insomnia. I go to bed very, very tired and am able to go right to sleep for 2-5 hours and then I am awake the rest of the night. I was experiencing night sweats, so I have switched my Arimidex from evening, to morning. I would rather have the hot flashes and sweating during the day, then disturbing my sleep. However, even though that is better, I am still having the insomnia. I will speak with my RO tomorrow and let him know of the sleeping issues. Don't know if it is because of the radiation or maybe the Arimidex. I am starting to get weepy and grumpy from lack of sleep...
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Hi - been lurking for a while. Started Arimidex Jan 1 (Happy new year to me!). it's been a long 10 months of surgery, chemo, radiation and now lupron/arimidex. really hating side effects. besides the hot flashes which have been going steady since chemo started, having really bad leg stiffness - can't sit for very long - can't curl up, sit on floor, kneel, etc. Fine doing exercise but so uncomfortable most of the time. my MO wants me to try for a few months since new studies show that AI is now better than Tamoxifen for pre-menopausal women. We will re-evaluate by April - I'm not sure I can keep this up for another 5 years. Does anyone have experience that this achiness/pain will get better as time goes on instead of worse?
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I've been having similar issues since starting Arimidex on Jan 14th. The constipation is terrible, only sleep for 3 or 4 hours then I'm wide awake. The joint and bone pain is agonising; ankles, knees, left hip and pain down my right shin. My feet and ankles are puffed up like balloons. My muscles feel like jelly and I've been getting quite a few headaches. My memory and concentration are poor though that could be from lack of sleep. Trying to stick with it as I know it's early days yet. I'm hoping the SE subside given time. I'm not scheduled to see the Oncologist again until May. Hoping I can last that long. Thanks everyone for sharing. Hugs Donna.
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To keep the constipation at bay I eat Grape Nuts with ground flaxseed in them twice per day. I drink a lot of water and if necessary also take stool softeners. I have a small bowel prolapse so I have to stay on top of it. I am glad I am not the only one with muscles that feel like jelly. My legs have gotten so weak so fast. All in all though these are livable SE's if they keep the cancer away.
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Day four and the main difference so far is that my hot flashes are better. Certainly didn't expect that. Fingers crossed.
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I have been on Anastrozole since January 11. So far so good, although I literally lie awake for hours nightly. I tried switching the time of day I take the pill. But even before I took this med I was not sleeping a full night, and I have a very slight pain on one of my big toes. Sounds wacky and I am not sure if its the med or perhaps i hurt my toe (going to the foot dr to be sure) But I figure if this is my side effect I will happily take it. Not sure if my tiredness during the day is due to the non sleep at night or just being 4 weeks post exchange:)
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I had toe pain on femara.
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In January I switched to mail order. Received a different brand. Started taking it at the end on January. Within a few days I started getting leg cramps. Then the dark mood set in which I thought was from my husband having to have a stint after he failed a stress test. Started crying all the time. Then I started getting a burning/tickling sensation in the lips which progressed to the tongue after a couple of days. (I get this same feeling when I eat foods I am allergic to but this was worse.) Last Thursday I decided this was a bad sign and called the mail order pharmacy. Spoke with the pharmacist who said that I needed to stop the drug immediately and they would issue either my old brand or Tevo brand and I should have it by Saturday or Monday. They told me side effects from fillers was becoming a well known issue.
Today I received a message telling me I was not eligible for a refill and it would be shipped after March 5 and I should receive it by March 15th. I called the pharmacy. Waited on hold for about 10 minutes. Got a very helpful person on the phone. She acknowledge my problem but said that my policy does not allow for a refill for another 3 weeks without an appeal. She started the appeal process. I was told that it could take up to 72 hours until I hear from the insurance company. I again explained what the pharmacist told me to stop the drug immediately and she said yes it was noted in the file that you are having a sever allergic reaction to something in that brand and you need to have it reissued in a different brand. She asked what I was taking now and I replied that I did not have anything but the new brand Accord on hand could I get authorization for a week or two from my local pharmacy. Her answer was I couldn't. Could you just use what you have on hand. My reply. "Well I guess not taking anything for a week or two is safer than dying from anaphylaxis due to an allergic reaction to the drug." That comment went right over her head. She thanked me for being patient and understanding.
The good news is that the leg cramps stopped with in two days and yesterday the tongue and lips stopped burning. My mood is better but not the way it was before breast cancer Must have been that tiny little pill from accord.
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Brutersmom, that is really scary. So glad you stopped it. That person from the pharmacy was so clueless that it is frightening. Hope your insurance company is better than pharmacy person. Very relieved your symptoms have subsided. Teva or brandname will probably do the best for you.
HUGS!!!
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I was on Pack for 4 months without any issues. The 2.5 weeks on accords was not fun. The scary thing is the manufacturer can change ingredients at any time and this could happen again. It happen with my blood pressure medicine years ago and then they would not acknowledge the problem. At least now they acknowledge the problem.
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Wow! How scary Brutersmom! I can't believe that they couldn't give you replacement. I hope the appeal process runs smoothly
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Brutersmom, call your MO see if they have any samples. Lot of times they do.
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Brutersmom, not in the same category as changing fillers in meds, but 2 or 3 years ago, the maker of my cat's food changed something and really screwed up her metabolism and it's still messed. She seems determined to keep the fur really short, almost gone, on the back half of her sides. By now I suspect it is just habit. But it has been very bad and the cortisone shots put her into diabetes (needed insulin) which thankfully went away. So fillers in anything can really do you in.
HUGS!
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Well, I have posted no side effects, but have to report that after being on Arimidex....direct from the manufacturer, I am having a lot of joint pain.
I have been on it 6 months. I will continue because of its purpose, but, oh, gosh, I was hoping I would be one of the lucky ones with no side effects. I will continue with exercise as it is important too. Trudge through it!!!0 -
Hello everyone... Well, I'm new to this board. I have to finish rads before taking my first Arimidex, but it's been prescribed to me instead of Tamoxifen. I'm just putting this out there... Molly50 already knows this from another board. I'm terrified of taking the hormonals. I'm a logical person, I have faith, yet this stuff scares me more than the chemo, radiation, and BMX. I can't explain it, except that I've had so many people close to me who've had such horrible side effects that they just play with my thought process over this whole thing.
Working on just getting done rads and then taking the pill...
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MySunshine, sorry you're having joint pain. That's a bummer. Some ladies have found some relief taking regular Claritin. Have you tried that?
JerseyGirl, I realize it is hard, but don't assume you will have SEs because others have. Hopefully you will do well. I have. You've had a rough time. Fingers crossed that all goes well for you.
HUGS!
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Brutersmom I sent you a PM
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JerseyGirl, take a deep breath. The great thing about the hormonals is that if you have really bad side effects, you can just stop taking them. Or try a different one to see if it works better. If in the end, you simply can't tolerate them, you can look at surgical options like an ooph to remove the ovaries and shut down a lot (not all) of estrogen in your body. I couldn't tolerate the side effects from tamoxifen, and wasn't ready for another surgery, so right now I'm doing Lupron shots to suppress my ovaries and I'll be starting Arimidex in a few weeks.
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Pontiac Peggy
I am just back on this forum and would really appreciate the recipe for drunken raisins! It seems that you were the one with the recipe ! Hugs to you!!! Bunnie0 -
BBBBun, actually the recipe is from RuthBru, but here it is (enjoy):
Drunken Raisins'-a natural arthritis remedy
To prepare gin-soaked raisin, first empty one box of dried white raisin in a shallow container. Only white or golden raisin should be used for this recipe. Then pour enough gin into the container to cover the raisins.
Cover the container ( but not with plastic, a kitchen towel is good) and keep it covered for 7 – 10 days on the to allow the raisin to steep in the gin (sitting out, not in fridge).
Allow all the gin to evaporate to leave gin-soaked raisins in the container. These raisins keep well when refrigerated. The popular advice is to take nine of these "drunken raisins" every day. Most users report improvements in arthritis symptoms between 1 – 8 weeks of using this remedy.
Why it works:
1. Golden raisins- the ONLY type of raisins worthy of the recipe- require sulfur or sulfides in their processing to make them golden. Sulfur is an active ingredient in 2 effective natural arthritis supplements: glucosamine sulfate and chondroitin sulfate. Golden raisins come from sultana grapes and are cultivated under the name Thompson seedless grapes in the United States.
2. Sultana grapes contain proanthocyanidins which are thought to help fight infections and reduce inflammation. Grapes also contain resveratrol, a powerful anti-oxidant that is being studied for many of it's disease fighting properties.
3. Gin is flavored with juniper berries and juniper berries contain Terpinen. Terpinen has anti inflammatory properties. The essential oil that is in juniper berries contains more than 100 compounds including myrcene (an anti oxidant), catechins (anti-oxidant), and flavanoids (anti oxidant). Test tube studies have shown that juniper berries can inhibit prostaglandin synthesis. Prostaglandins help mediate an inflammatory response and increase the sensitivity of nerve endings to pain. By inhibiting their production, a reduction in pain can occur.
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Peggy, is that recipe for joint paint? I cannot believe how fast this hip joint pain has come on. No, I hsve not tried Clariton, but am not a medicine person and do not want to take anything if I can help it. This really hurts!!! Darn!
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MySunshine, yes it is. But I have not used it. Others have had good luck with it. I think you might consider making an exception for the Claritin. It has few SEs, helps with allergies and the joint pain for quite a number of ladies. Hope the raisins help you.
HUGS!
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My Sunshine, I have been lucky thus far (6 weeks on Anaztrozole) but someone told me they took 1/2 cup of cottage cheese and a tablespoon of flaxseed oil daily and their bone pain totally disappeared. Although I eat cottage cheese pretty often, and I bought the oil and took it a few times and try to when I remember. Not sure if I just don't have SEs or it has helped:)
Worth a try
Good luck and feel better. .
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Hi All,
I have been a luker for awhile now but the time has come for me to come out of my shell and meet you all.
I hope its alright to post here since I am a stage 4 so here goes. I have been on Tamoxifen/Zometa for 7 years and it recently stopped working so its on to Arimidex/Xgeva combo. Hope to talk to you all soon. Thank you.
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NeoGirl, of course it's all right if you come here. We're glad to have you. Have you had other treatments besides Tamoxifen and now Arimidex? When did you start Arimidex? Anyway, WELCOME!!
HUGS!
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Peggy,
Thanks for the welcome. I have only been on Tamox for 7 years (when I was dx with BC) and just started the Arimidex this week. Hopefully, I can get another 7 years maybe on this one. Who knows?! I only have mets to bones only so all hormonal therapy for me now.
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