Arimidex - Coping with the SE's
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So another SE rearing its ugly head. These threads not only help to answer questions but are also good for finding out other things that can come up.
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The hyoid bone is suspended between the jaw and collar bone by muscles above and below. Makes sense that if the muscles are stiff it won't glide up and down as it should
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Thanks for the suggestions, I'll check it out. Question on the crisco.....it's greasy! Do you wear a pad or put a very very small amount on?
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I don't come on here often. I just finished reading all the newest posts. Like many have said changing to a different brand, or going generic of non-generic can help. And, time helps, too. I do wish you all that you find your solution. Or, at least an ease in symptoms.
I've stuck through my five years. I reached it back in November 2015. I had wanted to wait until some of the stress in my life was lessened. Well, I decided last weekend it was time. I took my last pill on Sunday, Jan 31. It's only been a few days, so not expecting to see much change yet. And, haven't seen much except I've noticed I haven't had any bits of trigger finger. It was never bad. Just periodically my finger getting stuck and a quick close of my hand and opening and it was gone. For whatever reason I had been noticing it a lot more recently.
I did print the test to see if 5 years is enough to e-mail my oncologist about. I don't have an appointment with her until September. We did discuss that I am fearful of going off the Arimidex. I will be off as long as I feel comfortable. A month, two months, maybe permanently. My Oncotype DX score was 8. But, I know my grandmother and mother both had recurrances. But, they did not have the treatment I had. So, still hopeful.
I have been very stiff lately with joint pain, but have been diagnosed with bone on bone in both of my knees. Recommended I have knee replacement. But, am delaying that as long as I can. I really want to see how much of my pain has been related to Arimidex.
Anyway, I just wanted to report in that I was "officially" (at least according to my onc) done with the Arimidex. It's been a long five years, that at times I was ready to give up, but stuck with it. I'm not sure how I'll feel if the 5-10 year test comes back stating I should stay on it. For now I feel good that I actually stuck it out. I've only taken one two week break during the five years. That was when I was having problems with my IT band and needing a cane to walk with. I was on generic Arimidex and within two days was walking again. Have been on name brand Arimidex since.
Oh, and my other fear is, I was just switched from seeing the onc twice a year to once a year. Had a little scare two years ago of spots in my other breast. After mammos every six months and a biopsy, they put me back on once a year. So, feeling like too many strings are being cut at once. But, I do trust my onc. She has been great.
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I have heard that our bodies get used to the hormone blockers. Especially the Tamoxifen. That in time just like antibiotics our bodies get used to them. I am having trouble with them all. The side effects for me are all in the depression category. How much does the taking it for life have to do with Drug company studies? Since we all have oncologist saying about the same things. I find it hard to believe we All fall into the same category. A lot goes into the study of a specific drug. I know first hand as my cousin is in the field for the blood cancers. However, knowing he has given his life to this study doesn't mean the drug recommendations are followed as studied. More often each person needs more or less than studied. And the rcommended time is often lengthened to cover such incidences. I hope each of us takes our healthcare into our own hand along with our Doctors and feel well educated about our decisions to make us, the best Us we can be. Long may we live a quality life. CC
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I have been on Arimidex for 3 years and have to take it 3 more years. I have get the generic from my insurance company. I do have another question. My oncologist told me it could make your cholesterol go up. Mine is not real bad but I didn't know if anyone else had that problem or heard it causing it to go up. I have trouble sleeping at night and just assumed it was due to the estrogen being blocked. I take mine earlier in the day. Maybe I should try it at night since I read some earlier post that said it could cause you to be sleepy. Any help would be appreciated.
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I think you have to experiment with when in the day to take it. I used to take it in morning, now I do at night. I was already on cholesterol meds before, so not sure if my numbers have changed a lot since starting anastrazole. good luck!!
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Claudia, it can indeed make your cholesterol increase, mine has, though not to the point of needing medication but that may be due to my exercising 5-7 days a week and watching what I eat. I've never had a problem with sleep. Used to take it at night and switched to taking in the morning as it was easier for me to remember it.
Good luck.
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Chris13.... I'm a nurse and love NPs but I believe she's wrong. What does that even mean? Only those changing to other Als?. The study was done on all anti hormone therapy. Sorry I wish she was right. IMO its just another health care provider negating our suffering....
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I was just recently diagnosed with Invasive Ductal Ca and had a lumpectomy. The doctors today (2016) recommend staying on hormones for 10 years now.
What are your best tips for side effects of Arimedex
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Hi newbcny, I am now at 9 years on Arimidex. I did not have any weight gain but I exercise daily. It really helps to exercise for weight gain and joint pain. The side effects for me would come and go. Sort of cyclic. I would just tell myself keep going for another week then it would just go away. I had very little hair thinning. I had/have vaginal dryness but I am 60 now so would have happened anyway. I did have acne that went away. Please just try to stay on it. It really decreases recurrences by over 50% if taken for at least 5 years.
Good luck!
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Fourth of July yesterday was extra special for me. It marked 5 years of Arimidex treatment and my liberation from that medication. I have been trying to find information regarding withdrawal symptoms and was unsuccessful, so I have come here to the people who have been through it.
My daughter-in-law is a Pharm-D, so I know that this medication will be totally out of my system around 7/14 (about 10 days) based on her research. What I'm looking for is how I will be feeling over the course of the next few weeks so I will know what to expect and ride it out rather than running to the doctor. I do remember how long it took to get over the initial side effects when I started. I've been having headaches and lethargy today, but it is summer in Florida and I am affected by the barometric pressure.
Thanks so much! And blessings to all of you!
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Glasslady: Congrats on being done! Way to go!!!!
I didn't notice anything other than I was less achy. I was hoping to drop a few pounds, but alas, that didn't happen. I did notice that my HDL had gone up 10 points when I was tested a few months later.
I think that now, more than a year later, my eyebrows and hair are filling in. Not that I was complaining before, but nice to have both fuller.
The biggest for me was feeling thrilled to be done with everything.
I had also checked out the half life stats, and realized that no need to taper off as takes some time to leave your system. I didn't notice a hormonal rush or anything to replace it. Just that I got less achy.
Enjoy your freedom! - Claire
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Hello ladies hope everyone is having a nice day. Just wondering if anybody had any advice for me. I started Anastrozole about 2 months ago and within the last 3 weeks have developed tingling, sensitivity and slight numbness in the fingers of my left hand. It's on the same side of my surgery. I was wondering if this is a common side effect of anastrozole. I'm not sure if it's the drug, herniated discs in my neck or just still problems related to the surgery. I messaged my Dr and she said might it be carpal tunnel. I know it's not carpal tunnel but they told me to go off the drug for a few weeks and see if it goes away. I'm a little nervous
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hi, I was on anastrosole 3.5 years, I found that everything that ever pained me was brought back by this drug. Finally after yrs of various pain, I went to tamoxafin.
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Thanks Stage 1. How do you feel on tamoxifen? I'm post menopausal, not sure I can go on that.
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Lemint, just quit Tamox after two years. I am postmenaposal also, just could not do Anastosole any longer so they put me on Tamox, a lot of post menoposal women are on it and yes, I did much better, but chose to quit everything cause I had terrible constipation, even after quitting calcium. I finally feel normal. But answer to your question, it is worth switching if you have pain with Anastrosole. The difference is minor for stats on recurrance.
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Thanks so much Stage. I'm going to stop taking it for three weeks and see what happens. I'm so happy you're feeling normal. It's nice to feel normal start all this.
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Lemini, it probably is the anastrozole. I had the tingling and numbness early on which actually did lead to carpal tunnel. I started wearing a hand/wrist brace 24/7 for a couple months and then only at night for another couple months and it all went away. Take the holiday as suggested and when you start again try a different manufacturer as many times it is the filler used, not the active ingredient, and you might not have the same problem with a change. Accord seems to be a problem for many; Teva brand seems to be the generic most can tolerate. Many have to take only the name brand Arimidex by AstraZeneca. Since you are post-menopausal I encourage you to try Teva and AstraZeneca before you switch over to Tamox. Of course this should all be discussed with your MO.
Good luck.
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In July 2015, I started taking Arimidex. Due to my tongue swelling, I switched to Exemestane in November. Both drugs have caused serious sleeping and fatigue problems but nothing that I can't tolerate.
In January, I started having pain in my foot where the Achilles' tendon attaches. At times this pain is severe and limits my mobility. I have found that icing the area and keeping my foot elevated helps. I am trying to tolerate the pain and be positive.
About 2 months ago though, a new pain suddenly appeared. It is in my elbow. It never goesaway and I can't find any solution to relieve the pain. Sometimes the pain seems to radiate from the elbow up and down my arm.
I was just wondering if this could be side effects from the medication. Has anyone else experienced similar problems while on these drugs?
Thinking I should take a few weeks off the drugs to see if my pains subside as mysteriously as they appeared. I know this is something I need to discuss with my oncologist, and I will, but I am not to happy with her services. I have been thinking about talking to my GP about my options for future treatments.
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Lemint
This happened to me on Arimidex and came back on Femara. It continued to get more and more severe and My hands would just go numb at night. I eventually switched to Tamoxifen but will probably need surgery to fix my hands. These symptoms came on quite quickly for me 6 weeks into taking the drug.
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509337 - I developed achilles tendon pain and swelling about 18 months into anastrozole and have been swopping manufacturers, including trying expensive brand-name arimidex, for the last few months and it has subsided somewhat. However, a bone scan in April to rule out mets, revealed bilateral rotator cuff tendon damage (along with severe degenerative changes to hip) which would explain the pain I've been feeling down both my upper arms, and around my right elbow which does not seem to have reduced with changing manufacturers.
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Wow Patoo, 509337, exercise and starwoman, these drugs really do mess with us. I'm taking a break from it until I see doc in 2.5 weeks. I'll try a different manufacturer when I run out if I try it again. Thanks for all your Insight.
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If anyone tries the name brand Arimidex I believe it's wayyyyyyyyyyyyyyy cheaper if you go directly to the manufacturer, AstraZeneca, and not your local pharmacy. Good luck everyone. (Are we having fun yet?)
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I and a 52 yo post menopausal woman and nthis summer I was diagnosed with Stage 1 Type II DCIS with Oncotype 14 as score and had double mastectomy (irregular cells in other spots of both breast). Don't need radiation since removed breast tissue + not in sentinel node. My oncologist informed that Chemo won't improve chances of recurrence but strongly suggesting AI pill (which I'm not starting until reconstruction finished in October). I'm concerned about AI side effects such as losing my bones, mood, joint pain, depression etc. I am fit and active and have a young daughter and my quality of life is important to me....so is surviving so I will take the pill.
Dr. prescribed AI generic for Armidex made by Accord. I've been searching the boards for other experiences and seems like the brand name ARMIDEX seems to cause less side effects in most women, and second to that the generic Anastrozole made by Teva. My oncologist doesn't appear as convinced of differences (but then she is not taking the meds and dealing with many more immediate life threatening cases). I do believe that patients often have valuable insight due to such things.
Wondering if any of you have experience with drug varieties? Researched this?
Thanks for sharing ...it takes a village to beat cancer!x
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I am visiting my daughter in Colorado and saw a news item about a boy with cerebral palsy that took medical marijuana to relieve muscle and joint pains. It made me wonder if it could help relieve my pain. Has anyone ever talked to their doctor about using medical marijuana or used the drug to relieve the side effects caused by taking Arimidex
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jbBCfree I have taken several different generics and have had few side effects. I am currently taking Arimidex manufactured by TEVA. I took Accord and actually had an allergic reaction to something in it by that manufacturer. (swollen tongue and lips) I was on Pack before that and they stopped making it. Everyone is different and reacts differently. I have not noticed any difference in joint pain, hot flashes etc. That has been the same with any of them.
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I am a year out of surgery and went through radiation. I just had my first mammogram and it was clear. I'm going to ask for at PET scan as my tumor was very close to my chest wall and I've read where it may drain to a node in the chest as opposed to the sentinel node.
I'm also thinking seriously about a double mastectomy because I just don't think I can go through this every year. I'm taking Arimidex and having some side effects (TERRIBLE hot flashes, joint pain, weight gain, no sleep etc) and would like to get off of that. Does anyone know the percent that Arimidex is supposed to lower the risk of recurrence? I've heard a couple different numbers.
If I get off the Arimidex and have the double mastectomy, does that lower my risk?
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No, it doesn't. If you had a lumpectomy with radiation, your chances are exactly the same of having a local recurrence (or distant recurrence for that matter) as if you had a mastectomy. So there would be no point in that now (as far as reducing your recurrence rate anyway). Arimidex is a systematic treatment which lowers the chance of BC cancer coming back somewhere else in your body (at which point you would be stage 4). Everyone's statistics are going to be different; but for me, 5 years of Arimidex lowered my recurrence chance 40%. Huge! There are other anti-hormonals, maybe you would do better on one of them.
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When I first started Anastrozole I had awful side effects. Muscle and joint pain so bad I could barely hobble. I couldn't even hold a pen. My Dr did give me something to help me sleep. I only used it for a very short period of time and am sleeping well now unaided.
I changed the time of day I took my AI from morning to evening.
After 3 terrible months my Oncologist told me to have a holiday from it. I had a 2 week break (was so nice) then I re-started on the name brand Arimidex. The improvement is astounding. Yes I have the odd ache and pain but it is nothing like it was. It's very tolerable. I'm hoping it continues that way.
AI's are the big weapon in our arsenal when fighting ER+ BC. I hope you can find one that works for you. Donna.
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