Arimidex - Coping with the SE's
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Was prescribed Arimidex and am afraid to start taking it. 57 years old, Onco score 16, bilateral mastectomy, 2.8 cm, node negative, ER+, clean margins, Had total hysterectomy years ago. Oncologist said chemo not necessary, but prescribed 5 yrs Arimidex. After reading on many sites all of the bad side effects, I'm so afraid to start taking it. I know with Onco score of 16 my chance of recurrence is 10% if I take the Arimidex, but what is my chance of recurrence if I chose NOT to take this drug? Oh, and I've never been able to swallow pills...I did read that these pills cannot be crushed or chewed.
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web530 I am not able to swallow pills either and so didn't look forward to the idea of having to take a pill for five years, that scared me more than doing chemo or radiation. The Armidex pills are small tablets, not a capsule, and easy to chew. There is nothing in the company drug monograph to say not to do so, also the pharmacist at the hospital where I picked up the prescription said it was ok. I've been taking Armidex since June and so far no major problems with SE's.
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whoops, sorry message posted twice
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I've been on arimidex for going on 3 years now, on the generic for the last month. I do have side effects, mainly hot flashes and some joint stiffness and occasional knee pain, but since I had arthritis before bc, I can't say it's all the arimidex's fault. My knee and hip pain/stiffness is worse over the last few weeks, but it tends to get worse this time of year anyway, so I can't say it's the switch from brand to generic. If I would get my act together and move more, I bet it would go away quicker!
I take my arimidex in the morning, with my antidepressant and blood pressure pills. I also take pills at bedtime, but I'm more likely to forget those than the morning pills. I don't think it matters medically what time of day arimidex is taken, but it may make a difference for some symptom-wise. Like many medications, sometimes there are troublesome side effects when you first start taking it, symptoms that go away or at least lightened up after a week or two.
It's scary to start taking a pill that you're going to take for 5 years. Try breaking it down a bit--commit to taking it for 1 month, or 1 week, then evaluate the situation and make another committment, or stop, whichever is best for you.
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Good advice Nativemainer. I have been on Arimidex, since March 2009 and have some SEs, but nothing I can't live with. I also have arthritis in my knees and do not think the pain has gotten worse on the AI. I take lots of vitamins and such and I take my pill at night. It does not affect my sleep.
I will encourage you to take the pill and see what the SEs are. As far as I understand, the SEs will subside if the AI is stopped. There may be some that will disagree and I am not challenging anyone, just stating what I have heard and I have been known to get out of my area of expertise and this would be one.
Good luck to you in your choice and what ever you decide, it will be the best decision for you.
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web530 - I felt just like you but decided to start taking it and see how it goes. So far, so good. I have not switched to the generic yet - may do so next refill. The pill is tiny, so no problem swallowing.
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Gosh, seems as if the whole country is freezing. It is even cold in Florida! Drizzly, grey - looks like it could snow but not cold enough. It has snowed here a few times. Once it was enough to actually make a layer on a car. Usually it just shows as light flurries.
I was supposed to leave this coming Friday to visit DD in So. California for 6 days, home on the 22nd. BUT DH was riding his bike yesterday and got hit by a car! It was a slow motion wreck but kind of a head on collision. Driver did not see him coming and she turned into his oncoming path. He refused to go to the ER but is skinned and sore today. Mostly hip pain so will see PCP tomorrow and get xrays. Even if nothing is cracked he is going to have to feel A LOT better by mid week or I need to cancel my trip. Well, at least I have most of my Christmas stuff done since I thought I was leaving. Maybe not as organized as Juanelle but getting there.
So many of us take Arimidex or other AIs without serious problems. Sure aches and pains abound but who knows what we might be suffering even without the drugs. Our poor bodies have to go through so much in the course of treatment, it's hard to single out one particular cause of trouble. Not to mention stress !!! I have stopped Arimidex and now take Tamoxifen for complicated reasons... but still have not ruled out the possibility I will go back to an AI in the future. By the way, I was on Arimidex about 16 months and it took about 5 weeks for me to feel I was no longer experiencing the negative SEs. Of course that probably also means I was no longer experiencing its positive effects
Everyone is different and you can only know how your body will respond by giving it a try. Bottom line: even though I stopped Arimidex I am glad I took it as long as I did and grateful for whatever good it did while I was on it.Our neighborhood has been invaded by flocks of vultures! They sit on the roofs of houses and it sounds like men stomping around up there! They tear open garbage bags and strew food all over the street. Even the neighborhood cats are afraid of them. It's kind of depressing to see big buzzards sitting on your roof! Like a dire warning of something
Someone suggested they are attracted by the cat food left out for feral cats by some animal lovers. ??? I don't think there are any dead bodies in back yards!Better go see if DH needs anything...
Wishing everyone good medical reports!
Pam
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web530. I don't think that any one of us was not afraid to start taking Arimidex. It's scary!! As Char2010 said, it is a very tiny little pill...actually hard to believe that it can do what it does it's so small. My oncotype # was 14 with a 9% chance of recurrence. My onc told me that # would be doubled if I didn't take the Arimidex. Hope this helps.
wendy
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Shelley,
Don't be afraid. It is for the best and that is what I know I needed to tell myself in the begining. The gals that are on this board are worth their weight in gold and will get you through all of this. There are so many of them...someone has most likely had any of the problems any newbie needs an answer to. Take care and know that you have a support system a few key strokes away.
We are lots of fun too!!!
Teri
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Thank you wonderful ladies for the information, it's been very helpful. I just noticed my prescription (which I haven't filled yet) is for Anastrozole (the generic). That pill is blue triangle and larger than the tiny Arimidex. I wonder if my insurance (Blue Cross/Blue Shield) will pay for Arimidex instead of the generic; the pharmacy says a 30 day supply is $300, I can't afford that without my insurance. So, is there any difference in side effects between the generic and the Arimidex? I'm pretty sure I could manage to get that tiny Arimidex pill down...not so sure about the generic, unless it can be crushed or chewed. Again, thanks for all the information. I"m probably the biggest scaredy cat on this message board.....need to take a Xanax just THINKING about taking this medication for the next FIVE years. Ugh! But, it sure beats the alternative.
P.S. If anyone else is like me and can't swallow pills, if you take medication that can be crushed or chewed, take it with a Hershey kiss and you can't even taste the yucky pill.
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web530--the side effects SHOULD be the same for the generic as the brand name. That being said, there are many women who have reported having different side effects or different intensity of side effects. The package insert with all the technical details about the drug does not say it cannot be cut or chewed. You could call your pharmacy and ask, they will have that info at thier fingertips. I have to admit I haven't tasted mine, so I can't advise about that aspect. I like the Hershey Kiss idea--that's a good one! Your insurance will probably pay for the brand name pills, but at a much higher co-pay. My BC/BS plan charges me $50 for 30 brand name pills, $10 for the generic.
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The generic has EXACTLY the same formula as the expensive stuff.
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web530 - please check the description of your pill on the bottle or information sheet. It should say what color and size the pill is. I say this because I also picked up my prescription for the generic Anastrazole and it is a tiny white round pill, just as the others described the name brand Arimidex. I'm concerned you might have accidentally gotten something else. Wouldn't want you taking Viagra instead of Anastrazole!0
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Some great news for persons suffering pain from Arimidex!!
Pain From Breast Cancer Treatment May Be Relieved By Depression Drug
http://www.medicalnewstoday.com/articles/211224.php
I'm on Celexa now but would have NO problem switching to Cymbalta!!
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enjoyful,
You have to let us know if it works.
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Great news! Makes sense.
I noticed the study was funded by a pharmaceutical. It is possible there are other anti-depressants that woudld also help. Although, it looks like Celexa is not one of them.
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I'm new to the board and I posted this same question in another area. Now I have found this one and am trying here. Here is my original post:
I started on Arimidex and had basic side effects of knee joint pain and I put on approximately 45 lbs, while I was eating healthy and going to the gym 3 days a week. When the Anastrozole came out I switched to it because everyone informed me that it was the same thing. However, I have had a major increase in side effects with the generic. I still have weight gain, however it seems to have tapered off, and the joint pain in my knees. However, now added to my side efffects are muscles spasms in my back at various times, headaches, bloating, heartburn, pain in my pelvic area, can't sleep at night and even my teeth ache now. I have also noticed a major change in my moods, I am constantly depressed and ready to snap at anything at the drop of a hat, and for people who know me, that's just not me.
Has anyone else had this big of a change switching to the generic? Or are these side effects that would have eventually appeared if I was still on the Arimidex? I called my oncologist about what I could do and they suggested taking more medication to help with all the side efffects.
Here is my dilemma, before I was diagnosed, I hated to take any type of medication. I did have chemo, even though I was against it. However, I am considering stopping the Arimidex all together. I was diagnosed at at the beginnings of stage 2, and it had not spread to my lymphnodes. I had a bilateral mastectomy, because of my age and the chance it might come back. I don't know what to do at this point. If the side effects are tearing apart my body from the Arimedex, is it worth it to be on?
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sjeilers
There are 2 other aromatase inhibitor drugs. Perhaps your onc would consider switching to one of them to see if your side effects change. All of the AI's carry the same side effects, however, it is possible not have the same side effects from every AI. It sucks to have to add more drugs to combat the side effects from just one.
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sjeilers,
So sorry you are suffering these SEs, probably - possibly from anastrozole. Maybe you could try a generic from a different manufacturer? If that does not help, you could try Arimidex again after a brief vacation or one of the other AIs. You might ask your doctor to run the percentages to see what benefit you get from an AI over Tamoxifen if you get serious about stopping the AIs. Just keep your options open and don't despair of all hormonal therapy.
Pam
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web530, I am also on the Anastrozole and it is a small white pill about the size of a baby aspirin, so please check it out to make sure you were given the correct prescription.
sjeilers, I was on Arimidix for about 4 months before being switched to the generic. I guess to be honest, maybe I didn't develop any SEs until after I was placed on the generic, but can't really remember at this time. Anyway, now I have been on the generic for about 5 months and my SEs are subsiding. I hope I continue in that direction. I certainly haven't had the SEs that you are describing. Just joint pain in my hands more than anything.
Juannelle
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web530, what company markets or makes the anastrozole you were given? I, too, am wondering if you were given the correct drug. IMHO, it's unusual for a generic to be so different from the brand-name drug it's supposed to replace.
My generic anastrozole is marketed by Breckenridge. It's made by a different company under contract to Breckenridge, but "Breckenridge" is the name on the vial and that's who my pharmacist said is their source of the drug. Mine is a tiny white pill that looks almost exactly like the original brand-name Arimidex, except for the letters embossed on the pill.
We could look up the description of your anastrozole on line to see if it's supposed to be a blue triangle, but there are so many (dozens) of manufacturers of anastrozole that it would be really difficult. So, if you could post the company name that's on your prescription vial or receipt, that would give us a head start.
I am p*ssed off right now. I just called in refills on all my meds today -- I'm taking several things, including anastrozole, that are classified as "maintenance" drugs, so I can get 90 days at a time. My insurance plan changed prescription drug managers this year (October 1), and I discovered today that I cannot get a 90-day prescription refilled until 95% of the time on the previous refill has elapsed. So, I have to wait until I've taken 86 of the 90 pills before I can get the script refilled.
That SUX. What if I'm on vacation when I need to refill it? What if the drug is out of stock and the pharmacy has to order more? The prescription drug manager we had for years and years on our plan (ExpressScripts) allowed refills when 2/3 of the 90-day prescription was gone; and they also allowed a "vacation override" in case somebody was traveling when the refill time kicked in. (I could get a refill a few days before the 2/3 time was up.) This new manager (MedImpact) does not allow a vacation override.
Phone reps from MedImpact claim my insurance plan has dictated the terms of this new agreement, but I guess I'm skeptical. Their response to my complaint? "Well, you could just get your prescriptions transferred to a pharmacy in a town you're traveling through at the time." Yeah, right. Try that in rural Montana, when you're on your way to somewhere else by the end of the day.
<sigh> I guess I should be happy I even have prescription drug coverage anymore, and that the co-pays are still affordable (although they went waaaaaaay up this year).
otter
P.S.: Thanks for tolerating my grouchiness.
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sjeilers...only you can decide QOL issues vs taking AI's...I took AI's for 3 1/2 years then stopped due to side effects....to me QOL was too important....I figure 3 1/2 years had to have some benefit.....its been 9 months since I stopped the AI's.....I am doing much better in all areas of life, but I am not back to where I was prior to Dx.....as the others have said, even though the 3 AI's all have the same side effects, different people react differently to each one....some people have no side effects at all....I would say try another AI before giving up all together....btw...I tried all 3 plus tamox...
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For me chemo gave me a 20% relative risk reduction & Als a 40% risk reduction.....so it was HUGE.....I would sure try it with an open mind......yes, it is a serious drug, but we are fighting a serious, deadly diease.
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sjeilers - are you young? Arimidex is harder on the young ones. Still used to having estrogen I guess.
I had a ton of side effects - and took a lot of drugs to counteract their effects. Recently, just finished my 5 years. It was a tough 5 years.
However, the ladies here have tips to help with most of the usual suspects. There is a quick summary on the thread Arimidex and Tips to Help.
But as the other ladies said, try the other AI's or Tamoxifen before you drop out, or ask your Dr. for a small break.
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Thanks everyone for your responses.
I was on the Arimidex for about 4 months as well before switching to the Anestrozole. I've been on the Anestrozole now about 3 months. When I had so many side effects come up the only thing my Onc said was to take more medication for side effects. He didn't really want to talk about other options. I have another appt in January and if he isn't more up to discussing options I am considering asking for another referral. I just don't feel that I trust him. There isn't anything he has come out and done, its just the responses I get to my questions, he treats me like I'm wasting his time and this is what's going to happen whether I like it or not.
I get my prescription filled again next week and I'm going back to the Arimidex to see if that helps. I am very concerned because of how depressed I am all the time and that I feel just short of screaming at people constantly. I'm normally the one known with all my patience and a smile on my face, now I feel as though if someone smiled at me I should smack it off their face. I"ve been that way the last 3 months, and I feel its getting worse. I know what I'm doing and thinking is wrong and not like me, but I can't seem to stop it either.
Also, I had a hysterectomy when I was 38. I was diagnosed with BC at 40 and I'm 41 now. Will be 42 in February. Are the other types of AI for pre-menopausal, or does it matter?
I wan't to stay on something to help prevent the cancer from coming back, however at the same time, what good is it doing if its destroying so many other parts of my body. My concern is if these are the side effects I can see, how bad are the ones I can't see?
Sorry, there I go again with my inner Anestrozole Grouch attitude.
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Oh my gosh ladies! Remember we were talking about prunes & dark chocolate? Well, guess what! I was at grocery store today and there it was on a "New" display - Sunsweet Chocolate Plum Sweets. Funny they don't call them prunes - but dried plums !!! And, package says "ultimate antioxidant snack." Shoot - we could have been rich!
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Well I'm home from work today with my first urinary infection, I guess from the Femara. Came home with a 102 fever and burning. I've never had one before in my life. Do you lovely ladies have any ideas to try never to get one again. Dr. gave me an antibiotic, and said if it returns again will consider giving me a small does antibiotic to take daily. I really don't want to take any more meds if I don't have to.
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drink tons of cranberry juice (probably won't help once it starts, but drink some everyday as a preventative measure).
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kira: I am on a daily "small" dose of Nitrofurantoin to stop severe vaginal pains I was having after taking Arimidex. My Onc or gyn had no idea what was causing the pains and could not find a vaginal infection from tests. However, the only thing they knew to do was keep me on that small daily dose of the Nitrofur and it's worked great "so far". Cranberry juice did not work for my problem since it wasn't really an infection. Best of luck to you.
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kira--drinking at least a liter of water or other non-caffienated fluids a day will also help keep the UTIs away.
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