Arimidex - Coping with the SE's
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Hi Rocket and Ladies I guess I havent posted on any of the boards for some time now. I have had a lumpectomy last summer, 6 weeks of radiation and have been on Arimidex for more than 4 months now. WOW it is just so amazing to read about all the side effects you all are having. Well of course first the hot flashes went into motion, what a pain I have already been thru menopause 7 years ago....YUCK, now I have a hard time sleeping anyway but oh boy now some nights are really crazy. Dont get me wrong I am thankful for this drug, but all this coupled with depression is just too much! And now I am hearing it can cause joint pain I have had a sore elbow and upper arm for 2 months and an achy knee...sorry to moan so much, but hey thankful to be alive! BTW what is the SE'S?
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Hi Cynthia, blessings to you and hopes for good health.
Yes I tried Vitamin E suppositories but they seemed to melt before I got my finger out! And then drip, drip, drip. I do prefer natural products without chemicals (which Replens is full of), have tried Emerita, Sylk, and Yes, but like Beau, I heard about coconut oil here so I'm going to try it. My massage therapist said it can be very thick -- kind of like Vaseline.
And for joint pain and sleep problems on Arimidex, I take 10-20 mg of amitriptaline (generic for Elavil), as needed. It's not addictive but is sedating, used to be prescribed as an antidepressant but now typically prescribed for pain. Very inexpensive, too. It does make my mouth dry (yeah, I know, dry at both ends), but it's such a relief to be able to sleep and not have the joint pain.
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Just checking on this, I started on Arimidex Jan 25th and until today just hot flashes and dry eyes. Well today, I started my period....first one in about 8-10 years. Anyone else have this problem? I mean, I'm 57 and thought I was totally thru with all of that, help...how long will this last?
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nana that doesn't sound right. Is it your period or spotting. Did you call your onc?0
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Hi, Cynthia, Rose,
I swear by coconut oil. I use the Whole Foods 365 brand sold in their vitamin department, for the quality AND the gentle coconut smell. It is in a jar, very solid ( kinda like Crisco, but harder) and quickly melts with body heat. I insert a very small ( dime sized) piece - morning & night - means I now wear a panty liner, but that's the least of my worries
It has been the only moisturizer to also keep the dry skin itchies away from my skin - only need a very small amount. During the winter, I also used ( on my body) pure Cocoa Butter. You melt it, in its jar, in the microwave, and then apply as an oil. Yes, it smells like chocolate, on top of the coconut. And yes, I am very happily single ;-)) And I LIKE the smell
Almost 4 years on Arimidex - still some achy days. The List of Maybe This will help is long: In honor of Ruthbru we MUST start it with EXERCISE. Walking. Check your Vitamin D level with a blood test , good vitamin supplements, I've taken Glucosamine for years - only thing that keeps my knees from creaking. Some use different forms of Magnesium & say that seems to sometimes help. Massage, acupuncture - I do both, love it. I also stopped eating all wheat gluten - made an AMAZINGLY positive difference - literally, stopped the joint pain. It comes down to "try it & hope it helps."
My docs still want me to lose weight. Yeah, right. Good luck on that one - but I'm also sure I would feel better if I was draggin less weight around.Probably some things I'vef orgotten, please add to the list.
maybe we ought to make a THREAD on Things to Do to Help with AI SE's ;-)))))))
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Called my ONC yesterday morning and she said to take Benadryl with the Arimidex which is what I did last night and woke up without hives. Hooray for me, but still have the burning sensation in my throat and esophagus. I take Prilosec twice a day for reflux but this does not help the burning at all. Anyone else have this side effect. Also wondering why they want to prescribe Arimidex instead of Tamoxifen. Did some research and Tamoxifen does not cause as much bone loss and there is less of a chance of heart attack compared to Arimidex.
Caerus-Sunflowers: will have to try the coconut oil as KY jelly is just not working anymore.
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nurseronda10,
I was on Arimidex about 18 months, then switched to Tamoxifen which I have taken for the past 6 months. I believe for ER + post menopausal women Arimidex or other AIs are the drugs of choice because they give a few percentage points better non-recurrence rate and, while the SEs are often miserable, they (AIs) do not have the more serious possibilities of causing blood clots or uterine cancer. I have some neurological problems that were really aggravated by Arimidex so I finally had to stop it. I also had the hand and foot cramping and nuclear hot flashes but would have put up with them to be able to stick with an AI if those had been the only problems. I have tolerated Tamoxifen without any problems, milder hot flashes and less cramping of hands and feet but both still do occur. I do not have a uterus so don't have to worry about that possible problem. Just taking my chances about blood clots.
My onc does have me taking one aspirin a day as a blood thinner. I've only just begun to see studies referencing heart problems associated with AIs so don't know what to think about that. It does not seem sensible to have to take benedryl to be able to take Arimidex. But so many meds do create problems that lead to taking other meds and on and on. But we usually think of things like BP going up or cholesterol levels rising. I wonder if switching to a different generic or even a different AI would help? Could it be one of the fillers and not anastrosole that is the culprit?
I do find with all my medications that if I take them shortly before lying down at night they are more likely to cause heart burn. So I try to take meds a good hour before going to sleep.
I'm sorry I had to stop Arimidex and don't rule out the possibility of giving it another try. But I am glad to have Tamoxifen and glad to be tolerating it well.
Good luck in finding what works for you and keeps the beast at bay!
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nurseronda I have heartburn on Anastrozole but it's getting better. It's not reflux though. I've had that.
From what I have read the Als like Armidex/Anastrozole tend to have fewer SE for most women. Tamoxifen actually has some more serious SE like endometrial cancer and blood clots. Bone loss doesn't happen suddenly. They will manage that. Als do work a little better but I don't even know if that's statistically significant because it's pretty small.
The list of SE for both drugs seems pretty long but remember many of us don't get them or get a small fraction of them.
BTW when I had heartburn and acid reflux Prolosuck never did anything for me. Also drugs like Prolosuck (proton pump inhibitors) used long term might negatively effect your bones. There is conflicting research but IMO it seems like it could be an issue for those of us that have problems to beging with. Right now I'm not taking any medication for my heart burn.
http://jama.ama-assn.org/content/296/24/2947.full
http://www.medscape.com/viewarticle/716172
http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm213206.htm0 -
pj123 sorry you had so many side effects while taking Arimidex. I work three 12 hour shifts a week at night. On my nights off I sleep at night and then when I work two shifts in a row, I have to sleep during the day, so trying to figure out a time that I should take the Arimidex. I took it last night, so will take it again tonight before I leave for work. Spoke with a pharmacist today who recommended taking it with Zyrtec or Claritin since it is not feasible to be taking Benadryl everyday. She also recommended NOT taking it before I go to bed.
Lago Thanks for the links...did not know that about proton pump inhibitors. I have had reflux for several years now. Really need an upper endoscopy, but so sick of needles, tests, doctors appts.etc.
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Thanks for suggesting coconut oil. I never would have thought of it. I had no idea it was so thick. I will definitely give it a try even though it sounds like a pita. lol
I also didn't know that Arimidex could cause heartburn. I take all my meds at night and I'm already on a medication that gives me reflux so if it's given me heartburn, I haven't noticed. Lucky me, I guess. I take either Pepcid, if the reflux feels mild, or Zantac if I need a bit more and it seems to do the trick. I can't believe that only a few years ago, I never used any meds besides ibuprofen. Now, I'm a walking pharmacy.
I have been feeling less achy the last few days. I have been more consistent about taking my calcium, curcumin, and glucosamine, but it could just be coincidental. It doesn't hurt that the weather is warmer, too. I need to really get out of the house more and walk to get some exercise. I'm afraid that I'll walk too far, though, and not want to walk home. lol I think I'll wait until the weekend so my hubby can pick me up if need be. The kids love walking to the nearby Rite-Aid to get ice cream.
Thanks everyone for all your help!
Cynthia
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if you want to lose some weight; check out www.loseit.com it is free and an easy way to keep track of calories AND exercise (plus when you exercise it subtracts calories...therefore you get to eat more.....makes it kind of fun).0
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Thanks, Ruthbru! I've joined Lose It! and look forward to beginning my logging tomorrow. Monday I had my assessment meeting with hospital exercise guru and begin workouts Thursday. A week from Thursday I meet with a nutritionist. Heck, I'll take all the input I can get through a program I'm entitled to for free for three months
I've participated in PEERtrainer for quite a while but look forward to supplementing with something new.
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nurseronda10 I had an esophocam (endoscopy) a few years ago. Really not that bit of a deal but they will put you under. Actually I had one back in the late 80's too. You will need someone to drive you home though.
Cynthia1962 heartburn on Arimidex is not one of the most common SE. It is listed here:
http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/arimidex.jsp
My NP specifically told me to take it in the morning. Not sure why but that's when I take it… and not on an empty stomach. The heartburn is getting a little better though so I'm assuming my body just needs to get used to the drug.0 -
Lago, I had heartburn for about a month after starting Anastrozole, but that has subsided. I've been on it for almost 3 months now. I changed the time I take it to first thing in the a.m. on an empty stomach. So far that has worked for me.
The only thing I am noticing now is my eyes are bothering me...almost like I bet blurry eyed for a while several times a day. Any advice on helping with that?
I see you are from Chicago. I live in the far northern suburbs - Lake Villa.
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Today is my first day of generic arimodex. I am so nervous that I will have side effects that make the med intolerable. I know this is key to my treatment. Wish me luck
Elizabeth
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Elizabeth I too waited for the dreaded SE. It never happened. Hope you have the same reaction I have… virtually nothing! (I'm on the Anastrozole too).0
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Lago
Thank-you for the encouraging words.
Elizabeth
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What a fantastic site.
I have learned a lot and think you are all wonderful for being so supporative of each other.
I have a question about Arimidex.
I have been on it since the beginning of the year.
The last few weeks I have been having jaw pain~~~feels like a mild tooth ache.
Tthe Dentist said it is not dental related.
has any one else had this experience.
Appreciate any input.
mamaw
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Yes! I, too, experienced the jaw pain. Right at the joint. I thought, "Oh no - not something else to face with a root canal or ear infection!" I stubbornly waited it out and it faded away after a month or two. For a while, I even had trouble opening my mouth very far.
Elizabeth - you'll do great. Remember, most do! We post of this 'n that here to support each other. I think each of us needs to go in with the assumption we'll have a few side effects but the overall benefit prevails. My onc said 1% have no SE's and 1% can't tolerate Anastrozole. We want to be in the remaining 98% so we can tell it's having an effect.
Best to us all!
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Hi Elizabeth,
I am starting Armidex today as well. Was on Femara, but had to go off due to high blood pressure and I already take blood pressure meds. Oncologist switched me to Armidex. Hoping for better luck this time around. Keeping my fingers crossed for both of us!
Linda
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Mamaw
I agree with GrayT re: jawpain - if everything else has been ruled out by your Dentist - it probably is an intermmitent SE of Arimidex ( or generic) - our bodies seem to take time to "adjust" to being without Estrogen. I find some of the symptoms come and go - and DEFINITELY get easier the longer I'm taking the stuff - 4 years now.
BUT, and this is a BIG BIG BUT, trust your gut - and if something really justs feels "WRONG" - make sure you check it out with your doctor/onclogist at follow up visit. It's a delicate balance, I find, between waiting it out - and reporting if something feels really wrong.
I went "over that line" right after I started 4 years ago - my hands were numb, couldn't sleep cuz of pain in hands, bought wrist splints which helpd, but it was awful. Finally called my doctors at Dana Farber in Boston - quite a distance from where I live - and I was told to STOP taking the AI. I stopped for 6 weeks - went to see them, I was on every 3 months at that time - -it was 3 months after I started - and was told I could start again - AND, I was fine!!!!
There is something about that "3 month time" after starting - when the worst of the SE's MIGHT, I repeat MIGHT kick in. Not eveyone gets them - think it's about 35% of women who have SE's as extreme as mine were - and that stopping, 6 weeks off, starting again worked for me.
Reminds me of early days ( 1980's) with computers- whe it would FREEZE, and I couldn't figure out what the heck to do - and was told - turn it off, and turn it on again! What? What does that do, why did it crash - "we don't know, just turn it off, and turn it on again." And it worked.
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I take the effexsor in the morning with a bite of food right along with most of my other meds. There is only one I have to take at night, nortryptiline (for nerve pain) and the pain and anti anxiety meds are 3 times a day). I don't think there is an issue with ibuprofin since I am taking Percocets (which contain accetaminifen), I can have no Tylenol - its Advil for me. I have every one of my treating physicians all on my meds list and the pharmacy - we review it at each visit to whichever doc - mostly the onc as I am in the treatment center monthly - it is a good precaution against any contraindications.
Hope all is well with everyone...Hugs...LowRider
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Thanks for the input concerning jaw pain.
Since I am a senior with high B.P. and Cholesterol I was thinking much more negative thoughts--
such as cardiac problems.
I feel more at ease but will heed Caerus-Sunflowers advice and trust my gut.
Blessings to all.
Mamaw
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Hi all, one more alternative to Replens, etc. is olive oil. My onc's P.A. told me her midwife suggested olive oil before she delivered her baby girl. I was going to try coconut oil, but had some olive oil already, tried it, and wow immediate relief.
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OLIVE OIL! what a fabuous idea! will try tonight!
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je1957 I had blurry eyesight during and after chemo. I went to opthamologist and found I had cataracts (steroids with chemo caused them to grow faster) so i had to have cataract surgery. I now see pretty good. I use artifical tears when my eyes get dry as they tend to do a little more often on arimidex.
I also have noticed skin in dryer in places. Hot flashes are the worst though. Some days I have very few and some days just seems like one after another. When i keep count it is 7 - 14 a day. I see the Onc in may and might ask to switch to something else. Lifemath site says I have a 21% chance of dying in 15 years without arimidex and a 14 % chance if I take it so i guess 7 % is worth it.
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About Olive oil.. I heard the Doc on TV say something about using it too.. but ok this is bad when he said it the only think I could think of . Do we use Virgin? or Extra Virgin.
OK enough of that .. but its really sounds like a very real alternative. I don't think I can handle the smell of the coconut oil. I think I will try the oil since I'm out of the Replens this week
I am still having a rash with the label Arimidex. Its no where near as bad as it was earlier. and it goes away really fast, doesn't come on every time I have a hot flash now.. It got up to 80 this past weekend and it didn't bother me so hopefully its one of those things that will work it self out.
Wishing you luck Elizabeth , I have had the rash with the Arimidex and the dryness and thats all so I feel lucky too!
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Wow, if the label said Virgin or Extra Virgin I'd have to pass.
Actually, though, I bought a bottle of pure olive oil in a 4 oz. brown bottle at the drugstore (save the fancy stuff for salad dressing). 0 -
Hi everyone
Day 3 of anastrozole. I appreciate the support and well wishes. I think the kicker of all this is life still goes on. Day 1 my husband and I had to visit his 89 year old mom who litterally fell and couldn't get up for many hours in her home. She lives 3 hours away. We hadn't seen her very much because of my surg/chemo/rads past 9 months. She is too frail to visit us. Fortunately, she is in the hospital now with a UTI and seems to be doing better. I feel badly because my husband has been caring for me and of course she has needed him too. Hopefully i will be well and we can visit more often in coming months and years.
Elizabeth
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Hi, I'm new here. I've been on anastrozole for a 1.5 months. I notice some people mentioined eating gluten free. What is that about? Does that help with hot flashes or chills?
I was not menapausal until I had a hysterectomy December 2010 for cancer prevention purposes. Then switched from Tomoxifan to anastrozole. I get hot flashes and chills. The hot flashes have increased since my thyroid med was increased a couple weeks ago.
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