All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: Arimidex - Coping with the SE's
Posted on: Jul 28, 2010 10:22AM, edited Oct 12, 2010 07:50AM by Lowrider54
Not just for Arimidex but all the Hormonals - se's are so similar so coping with them should also be similar and the remedies offered should work for any of the Hormonals - don't go away, read on if you are taking any of the hormonal treatments....
For those of us who are taking this potentially life saving/life prolonging drug, it does not come without side effects. There are some very lucky folks who don't have any...GREAT! But for those that do, lets share how we cope with the hot flashes and night sweats and stuff.
The 'Arimidex' thread covers more than just side effects and coping - there is much debate over it going generic and the effectiveness of its use. I am putting this up in hopes that new users can find the answers concerning the se's easily. Of course, please visit the Arimidex thread for more information concerning the statistics, research and controversy surrounding many of the AL's and new treatments we are being offered today.
Treatment is always a personal choice - if Arimidex is your choice, these kind folks can help you manage some of the issues that some with taking it.
I elected to take a low dose of Effexsor to aide with the hot flashes and night sweats. It worked very nicely for me. Water intake and walking assists with the possible joint pain. I eliminated as much gluten from my diet as I could (that stuff is in everything....lol) and did not experience weight gain - I did experience 'weight re-distribution' however - it seems to go to the tummy. I haven't found a good solution for that yet.
Good Luck All!
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May 2, 2012 07:10PM spunkyboobster wrote:
schatzi14-I've been on it Arim 1 month and 2 days (yes I'm keeping track). Hot flashes seem to be it for now, although I am noticing some general achiness in my neck and shoulders-but that could be age or any number of things.
Layla-I was given Onc tests (2, one for each breast). They were expensive-insurance doesn''t cover the whole cost. I was happy to pay it though, since my scores were low enough to keep me from having to have chemo.
mrochon-I take almost the same laundry list of meds, except fish oil. I'm going to add Claritin to see if I get rid of the general aches.
May 2, 2012 07:26PM ruthbru wrote:
from what I remember, it needs to be plain Claritin (not D)....at least for the Neulasta pain (I can't at all remember why...chemo brain, or selective memory?).
schatzi, I am probably done after 5 years, as I was node negative and only mildly estrogen positive. I think it is really a case-by-case decision (ie educated guess) right now.
May 2, 2012 09:30PM barbyjean wrote:
Layla, I had the Oncotype test done. Usually it is given to node negative women, and a low score indicates a low chance of recurrence, so a low score means you may not need chemo. I had a positive node but I was eligible for a clinical trial, so was able to get the test. My score came back right on the line, and I decided to get chemo to do everything possible to prevent recurrence. Since it is a fairly new test, and expensive, I think the testing varies depending on where you are treated. I'm glad I got it, the more information the better.
I am having a lot of pain with anastrozole, and tried Claritin today, and had a better day. We'll see tomorrow, I hope it works for me. It is plain Claritin that is recommended, not D.
May 2, 2012 10:47PM , edited May 2, 2012 10:53PM by sebm9
Hi everyone, I've been on Claritin for years for allergies before trying it this winter for my AI-bone pain, and have had none of the potential SEs to it. So glad it is working for so many! Honest, I have no investment in Claritin :-) My MO totally supports the Claritin. I ran it by the pharmacist at work and he was interested in this use of it, and said there were no contraindications. (I run my complete list of RXs, vitamins and supplements by him whenever I change or add something.)
I take three prescriptions including anastrozol; I take my scrips in the evening before bed along with biotin, cranberry, folic acid, and vitamin d. In the morning I take a whack of things including Claritin, Vits. C, E, l-glutamin, and fish oil. I also take herbal supplements, Reishi mushroom, and TeGreen (equivalent to 6 cups of green tea) at dinner. I have pillboxes and set it all up on Sunday evenings so I don't have to think about it before bed or while getting ready in the morning.
I had the oncotype test done as soon as I had my biopsy results. On a scale of 1-100, I scored a 19 -- just outside the zone of "chemo probably not worth it". Arrrrggghhh. I really didn't want to go through chemo but when I discovered the Penguin Cold Cap therapy to prevent hair loss due to chemo, I decided to go forward with both. I realized I was young, healthy, insured, employed, and had paid time off to go through it. I didn't want to look over my shoulder the rest of my life worrying about recurrence and having to face a day when I wished I'd done more to prevent cancer from coming back. I'm glad I did. I had virtually no SEs from chemo and I kept my hair as well (TCx4@3). The oncotype test is expensive and not all insurances cover it. I had to argue a little but eventually got it covered.
May 3, 2012 07:35AM NativeMainer wrote:
Histamine is one of the chemicals the body uses to fight inflammation, and the inflammatory process is also involved in the bone marrow's production of blood cells. So it makes sense that Histamine blockers like Claritin and Zyrtec would block some of the bone pain caused by nuelasta and the AIs.
May 3, 2012 07:38AM KittyKitty wrote:
My experience has been that Claratin also works for the dry eye and associated problems of Arimidex, as well as with the joint pain. I wish someone had a scientific explanation for this.
My only guess is that some people may have a threshold allergic reaction to Arimidex, or to some of the fillers in generic Arimidex? It sure would be good to get to the bottom of this, and it does not seem that any of the internet information or any of the package information is very helpful.
Maybe something to do with histamines? IDK.
May 3, 2012 08:27AM schatzi14 wrote:
I already have thyroid disease and have been taking synthroid for decades. I need to make an appt with my GP to check all the other levels. Was just waiting till all the treatments were done. I asked my MO if I needed a bone density test cause of Arimidex and he said "not yet". I will ask my GP cause I trust him. As for the oncotype I assume that it was not needed or else I had it and he never told me. Is it basically done with a blood test? Sure had lots of those. In Canada we all have Federal health insurance therefore, so far all this has cost me nothing. Even the Neulasta was covered by the pharmaceutical company and the rest by our private insurance. So far that was all my own insurance had to pay for. I am also over 65 so most meds are covered by the gov't too. Much like your Medicare I think. I am also a big fan of Claritin and if the Arimidex causes joint or leg pain, I will try it. Thanks for all the info :D
May 3, 2012 09:19AM Lifeafter wrote:
Well, I worked out last night. Trainer had me do a crazy circuit which involved running for 1 1/2 minute intervals. Feet weren't hurting and my neck is feeling ok this morning. Still a little sore but not that steel pipe stuck in my neck feeling. Don't know if it's the Claritin or if I just happened to have a good day but so far so good.
May 3, 2012 10:20AM KittyDog wrote:
I second Sunflower on this. Get a Bone Density Test done first. My Dr. also says every two years after the first.
May 3, 2012 10:25AM NativeMainer wrote:
Some MOs do not do baseline bone density testing before starting an AI. Mine didn't. I got one after 2 years on arimidex and will probably get one again this year (year 4 if I'm counting right). A lot of this depends on the area you are in and the doctor you see.
May 3, 2012 01:47PM barbyjean wrote:
Perhaps Schatzi has had a bone density test within the last two years that can be used as her baseline? My last one was a little under 2 years ago, so my MO had me do another one as my pre-AI baseline. I too thought it was SOC.
About the Oncotype: they use a tissue sample from your tumor and I think I had to sign release papers before they sent it in. My score was also a 19, and like you, Susan, opted for chemo so I would have no regrets. I had one positive node also, but it was a difficult decision.
Another symptom - dry eyes - that wasn't bad enough to worry about, but when Kitty mentioned it, I realized it is one of my SE's. I learn so much from you ladies, thanks!!!!
I have to see my RO tomorrow, my radiated breast has been red and slightly swollen, she thinks it may be an infection. It makes me think that I am probably overdoing it with my activity level, trying to catch up for all those months on the couch. Wish me luck! And patience to slow down a little.
May 3, 2012 03:37PM , edited May 3, 2012 03:48PM by schatzi14
Barby and Sunflowers
I had a BD test decades ago....was low normal then I had some cockamamie thing on the wrist that my pharmacist wanted to do as a public service thing. She said then it was OK but not to forget a real BD test. I intend to get one since I have been on Arimidex for 3 months now.
My MO seems to have washed his hands of me until I see him in October LOL
While I was waiting to see the hematologist today, I had a chance to see my records...MO's report said I was HER2 negative but at the end of the letter he says "she is to continue on Herceptin"....................jeez I was NEVER on it...I wonder if he meant Heparin? I have been taking Fragmin shots for 6 months but done now.
For sure everyone needs to be proactive concerning their health....
Did anyone see Suzanne Somers the other day telling women it's dangerous to have mammos?
She is pushing estrogen for all women...wonder what her BC was regarding ER/PR etc?
May 3, 2012 05:28PM schatzi14 wrote:
Right ...that was my point...he made a mistake...think he meant to say Heparin...a blood thinner.
May 4, 2012 02:09PM , edited May 4, 2012 02:10PM by Rocket
I started taking the Claritin this morning. I do feel less pain today, but the real test will come on a day when it threatens to rain. I am also terribly upset about my cholesterol. It used to be 180 two years ago prior to BC. I don't even eat much meat and rarely an egg. I also take flush free niacin three times daily. My cholesterol is 250! My doctor doesn't think I need medication for it yet as my HDL (good cholesterol) is high enough to offset the LDL. I'm still upset though.
May 4, 2012 09:35PM MarlaB wrote:
Been on Arimidex since 12-2010. My hot flashes haven't been any worse than before the meds..ha-ha. Oh menopause! Anyway, the biggest problem is the finger joint swelling and pain. Am now diagnosed with arthritis and having surgery for trigger thumb end of the month. I use ice and heat and finger exercises. Also, general fatigue and weakness. I was always a walker and bicycle rider and still am, just taking a little easier.
May 4, 2012 10:04PM Elizabeth1889 wrote:
MarlaB, Good luck with your trigger thumb surgery. I had it done on my left thumb five years ago. You will be fine once the stitches come out. Joint pain in my fingers is an annoying AI side effect for me, too, especially when I first awaken in the morning. My cholesterol is higher, too, and my HDL/LDL ratio is getting worse. The SE's I dislike the worst are depression and insomnia. Of course, the SE I like the best is not having a BC recurrence.
May 4, 2012 10:28PM jankc wrote:
spunkyboobster, I've been on Arimidex for 7 months now and last month my neck and upper back started hurting. It was pretty intense for a week with spasms and knots but now I just have "spells." I go to the MO next week so I'll mention it, although he already told me in January the bones and muscle aches might be a cause for a switch in medications even though I felt fine at that point. I really want to stay with what I'm on and stick it out if I can. Other than that, I've had hot flashes and night sweats and my legs ache after doing not much of anything. I've been working in the yard non-stop since Sunday so right now they feel like they're broken (!), more extreme than when I wasn't on the medication, but they feel better than yesterday so that's a good sign. All in all, there's nothing I can't live with...yet.
I didn't have a baseline bone density test either, another thing I'll bring up next week. I've been tested for everything else under the sun so there must be a good reason for its exclusion, even though I can't think of anything...
May 5, 2012 04:54AM WaveWhisperer wrote:
Hi, ladies. I started Arimidex yesterday. I'd been having hot flashes and occasional night sweats anyway, since I had to go cold-turkey on the hormone replacement drugs I was taking before my BC diagnosis six months ago.
But last night was awful. I had such bad night sweats that I had to get up at both 1 am and 4 am to dry off and change my nightclothes. I was only wearing panties and a tank top the first time and then switched to an all-cotton nightshirt. Even the sheets were damp.
Do you think that I'll have to face this every night I'm on Arimidex???
May 5, 2012 06:31AM Snoopsmom wrote:
I'm assuming the hot flashes are a result of diminishing estrogen? When I went through menopause (many years ago) I WANTED hot flashed because I'm always cold, but I only had about 3 of them....figures! Anyway, since I had so few with menopause, am I likely to have few with Arimidex? I certainly didn't mind the few I had naturally.
May 5, 2012 01:38PM WaveWhisperer wrote:
Snoopsmom, when I went through natural menopause, I had very few and quite mlld hot flashes. But the ones I've had since stopping the HRT have been much more frequent and severe.
Ruthbru, thank you for the reassurance that my body eventually will adjust. Whew!!!
May 5, 2012 02:42PM lizzymack1 wrote:
Interesting article on how Arimidex is the biggest step forward in 20 years for progress with treating bc:
Good news for all of you on Arimidex. The article states that Arimidex is working 23% better than does Tamoxifen. There are new rays of hope for us all every day ;)
May 5, 2012 04:08PM ruthbru wrote:
Here are some snippets from lizzymack's link:
A powerful new breast cancer drug has produced dramatic results. It greatly improves the chances of surviving the disease and could save thousands of lives. Research findings... suggest that Arimidex could prevent three quarters of them from suffering a relapse.
The latest research findings, from the largest cancer trial ever undertaken, show that post-menopausal women who took Arimidex daily for two and a half years after surgery were 77 percent less likely to develop cancer in the unaffected breast.
Dr Jeffrey Tobias of University-College Hospital, London, who is one of the trial investigators, called the results 'exceptional'. 'The reduction in the development of new cancers was very much greater than we had anticipated,' he said.
Arimidex was also found to be more likely to prevent cancer recurring in the same breast or elsewhere in the body after surgery. Overall, women taking the new drug were about 20 per cent less likely to suffer any sort of relapse.