Arimidex - Coping with the SE's
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I'm not taking it again. I took my first dose last night and watched the moon come up and then the sunrise. And it didn't even give me energy. Just exhaustion and the inability to sleep. I don't want sleeping pills for the next 5 years. I definately need to talk to the MO
Thanks gmafoley. this is embarrassing, but sleeping meds make me sleep walk, something I used to do as a child and I don't want to find myself weighing 599 pounds by eating everything in the kitchen at night or something even more dangerous
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bedo - I'm having the same thing! Going to work as a zombie lately, very irritatating. I'm not sure if I should adjust the time I take it to the early afternoon or stick it out until I adjust.
Any suggestions?
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Stage1: I talked to the nutritionist about my vitamin D drops in a sesame oil base.. She said those are no problem it is the ones in the soybean oil that are the issue...
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bedo and 37antique: i didn't have that issue when I took it with my breakfast in the morning... It seemed to be ok then and I went to work after taking it ... My issue so far has been the constant headache..
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Ladies I need your help - I have an appt with my onc tomorrow. I have been taking Arimidex for two weeks straight. My hot flashes have gone down by half, but my joint pain is increasing every day. First is was just the knees, now it is the feet, hands and back. oh yes, I forgot about the hair thinning. I don't know if this is an SE of all the surgeries I have had, but alot of hair come out when I wash it. More than before BC.
I know there are other post menopausal drugs available...Femara, Aromisin. Are any one of the others better than Arimidex? Thanks!
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Slinky, all the AI's (arimidex, femara, Aromasin) have similar side effects. What isn't clearly understood is one a woman will react more strongly to one than to another, but medicine takes advantage of the fact by switching us from one to another if we are having SEs that are too much to handle. Trying another might be helpful, but your onc may ask you to stay on arrimidex for another few weeks, as the SEs often peak and then calm down after a while.
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HI Slinky,
i would give you the same advice as NativeMariner, although for me it took a bit over 3 months for things to become manageble. After the first month, I took a 2 week break with my onc blessing. He said at the time, that 55% of folks do better if they take a break and 55% do better when they change AIs. I would also add that the further that i got away from "active treatment" (chemo in my case), the more my body adjusted to treatment, and the more that I just got used to the new, less flexible me, the better everything got. I hope the same happens to you too!
Bedo and 37antiques,
I had/still have some insomnia with arimidex. Some folks on the boards here reccommend melatonin, as a natural supplement that helps sleeping. I find that I have days when I exercise a lot, have minimal caffeine, I have no problems getting to sleep.Other times, I rely on 1/2 a sleeping pill to do the trick. Please talk with your onc to see if he can reccommend something to help. Even a short break could do the trick. However, as my onc likes to ask when I come in with my complaints,: are any of these deal breakers?
In his mind, "deal breakers' are heart issues or something life threatening. He reminds me gently but firmly (and Jo here on this thread says this all the time!) that "side effects are easier to treat than a recurrence". I don't mean to minimize your dismay or discomfort. I found my own journey on arimidex really tough, but so far, I have managed to re-group with each set back and go on. I have carpel tunnel in both wrists (new since arimidex), nerve compression from a hermiated disc that got worse with arimidex due to more arthritis, some sleeplessness, headaches.i
I found this onslought of problems to be disconcerting to say the least. I was so looking forward to getting back to "normal" after chemo and instead was faced with a whole set of new challenges. But folks here on this thread and site helped me tackle one problem after another. I now feel happy and positive, even if I am not back to my old self. I would also add that changing your diet can really work for some folks (reducing dairy and wheat has definitely helped me, but it doesn't work for everyone).
I wish you luck on your journey and hope that your side effects subside soon! Best,
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One of the things I have noticed here is that combo drugs and drugs are not being identified correctly--------percocet------is OXY and tylenol325 mg , TYlox is OXY and 500 mg tylenol.
Valium was referred to as not giving enough muscle relaxing affect. Valium was invented for muscle relaxation. There is no other muscle relaxer, that also has the antianxiety effect that Valium has. The dose is important though. To get the muscle relaxtion effect it needs to be at least 10 mg. Lower than that all you get is the antianxiety effect. Suggest reading inserts to identify ingredients. Valium was invented around 1960+-. Once it's antianxiety effects were identified--it's muscle relaxtion effects were forgotten by most doc's till this past decade, it was rediscovered. . But what was also forgotten, was the dose level to get to muscle relaxtion. 2.5 mg/ 5mg will not do the trick. Flexirill/soma can't come close to what valium can do at the correct dose level.
Slinky , I agrree totally with NM. I went through Arimidex and Femara. S>E out the wazzo. On Aromasin I am managing, but pain contol on all was /is a problem. All three caused fibromyalgia induced pain for me. So I take a SNRI , Savella. It is in the same familly group as Effexor/ Cybalta/ Pristique.
My drug of choice for pain is Fentanyl 25 mcg patch, I change it once a week versus every 72 hours. I will try to bring a link here, describing use
All Ai's have a drug interaction with the slow channel calcium blockers-----Norvasc and cardizem being the most common.
Posting now to get the link
http://community.breastcancer.org/forum/8/topic/770655?page=2
tested it twice ---there are 2pages. both have value. I'll test it once again before I leave.
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I have always been a terrible sleeper and worse since diagnosis...... I can't blame arimidex and bet I will sleep just as crappy when I'm done with it
. I do take an occasional prescription sleeping pill (which, for me, work wonderfully) and also do a hypnosis CD...which also taught me some self-hypnosis techniques, which have helped quite a bit. Sleep is probably my most frustrating issue. 0 -
Thanks for all the responses. I suppose I will try staying on the Armidex a little longer, since the hot flashes have decreased by half. Joint pain is my biggest complaint, but once I can start working out (after recovery from the next surgery), maybe the joint pain will lessen. If they all have similar SE's, I can deal with the little SE's I have now. I do take 10 mgs of Xanax to sleep - addicting, yes. Sleep 8 hours straight, yes. Well rested the next day, yes. I know it is not good to rely on a drug to sleep, but if I don't take it, I am up all night - not good for me or those around me.
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Just read this in Dr. Gott's column in the local paper. Don't know if it would work or not, but here is his home remedy for arthritic joints: mix 1 to 2 tablespoons of pectin with 8 ounces of purple grape juice and drink the mixture up to 3 times a day. Eventually the mixture can be reduced to 1 to 2 teaspoons in 8 ounces of purple grape juice taken once daily.
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Slinky---------you do what you have to for sleep. The only thing about Xanax of all the benzodiazipines , I have found that a disruption of continuous usage, there will be more withdrawal than the others. It's observational only. If I had a patient come in on xanax, I always made sure unless there was a medical reason, it got continued. When you reach the point , that you no longer feel you need it, please, wean off it over several weeks. by decreasing the dose by no less tha 2.5 mg icrements--------Namaste sas 0
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Ruthbru-------you have multiple good suggestions thanks sas
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Is someone tries it; report back on how it works.
And if that doesn't work, I will tell you about my aunt's arthritis cure involving white raisins and GIN!
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Sas, thanks for the advice. I know I was concerned about the reliance I had on the xanax that I asked my onc if it was o.k. for me to take them regularly. He said if it helps me to sleep he didn't see a problem. I will definitely decrease once I go back to work.
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Slinky - I took valium for about 1.5 years and then switched over to Lorazepam. When I really need sleep I take the lorazepam. If my body is fine and it is just an insomnia issue and I have slept well for days then I will take an Ambien at night. It all depends on how much sleep I really need and what I have planned for the next day.
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Slinky------Janice has a good point--------all of once took nothing. Now our cupboard looks like a pharmacy. You know what works for the situation . Do it, just not altogther LOL with a serious side 0
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Hi,
For sure I would question it.......it is never a bad thing to double check on any medication that is being filled.
Don't hesitate.
Pat
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Hi ruthbru,
I was reading your recipe for raisins with Gin months ago. I did do this. Now I'm eating six gin loaded raisins every morning and drinking tonic with gin afternoon. Still waiting for results!
Sincerely Usha
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I'm sure how long it would take for the raisins to work (the gin tonic should work immediately). 0
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Hi everyone,
Normally I am one who researches the heck out of everything I am taking. I knew my onc was going to put me on either tamoxifen or anastrozole after I was done with my chemo. I purposely didn't do any research on side effects because I didn't want to get any preconceived notions in my head because I knew I had to take it no matter what.
Here I am 3 months or so after starting anastrozole. I am just today starting to read about side effects because of how I am feeling. I right hand feels totally stiff when I wake up in the morning, almost as if I cant even bend my fingers, if I do they hurt. My left hand sort of feels that way but not to the same extent as the right. My hips hurt when Im laying in bed and wake me up. I feel like an old lady and I'm only in my 40's!
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move, move, move......
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Ruthbru; I love the white raisin and Gin idea - I read some of the comments to my hubby and we had a good laugh... He said we should up the raisin dosage
... I decided to switch my arimidex to dinner time today... I just take too much other stuff in the morning - I feel overloaded.... this will work..one way or another... thanks for all your encouragement... Off to work ladies Have a Great Day!
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or the gin dosage 0
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Gin works for me too.....maybe I should try that
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I was given aridimex although I am only 5% positive for hormones, and that too, it was 5% progesterone positive, not estrogen. I took it without any side effects for 2 months. After 2 months, oh my God, I was hit with SE's big time. My right hand was stiff, huge pain, and even my fingers became numb. Up till today, 3 months after quitting, my middle right finger is still numb. The Orthopedist has ordered an EMG test for nerves later this month. I think that if I continued on aridimex, I would be disabled by now as the SE's were very bad in my case. My Onc. told me that they give aridimex to anyone who has any percentage of positivity, as all they know so far, is that hormones plays a role in BC. He said at one point, that he would have to twist my arm to make me take it. But when I think how debilitating this was for me, I shiver. I really was getting very disabled. Maybe because I had really very low hormones to begin with, being almost tripple negative. I have read that some women get used to it, or that their bodies adapt to the medication. Sometimes, I wonder if I should have continued even with such debilitating results. I really wish there was something I could take. I felt my breasts were protected somehow when I was taking aridimex. Nowadays, I have a pain or two, a twitch here and there on my breasts. But during the medication, I didn't have any of those. Oh, one more thing - I actually was losing weight, not gaining. I had become really toned and it seemed like all the fat had melted or something. I felt that I looked great while being on the medication. Does anyone have any comments, please. Should I try it again. One more thing, my Onc. told me that getting on and off the medication has shown to increase BC. So it is not good to try and then stop, and then try again. If I am to take it again, it would have to continue no matter what. I totally understand what he is saying, as I mentioned earlier, when I got off the medication, I felt twitching and pain here and there on my breasts. During it, I didn't. I am so scared. My Onc. said it was extra insurance, that 10%.........since he said I was 90% cured after my chemo and radiation. I guess it makes sense that there is danger if one takes it and then stops, it is because hormones plays a big role in our breasts, when you're taking the meds, it lessens the hormones and when you stop, it increases it.
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Hi there,
I asked my onc about the various post-menopuasal drugs available and I decided to go back on Tamoxifen. He said it should help with the hair loss, joint pain and hot flashes (even though the hot flashes are low on my list). Since I had a total hysterectomy, I don't run the risk of uterine fibroids or whatever the long-term side effects are on Tamoxifen.
Anyone have any opinions about switching from arimidex to tamoxifen? Thanks!
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Hi Slinky,
I spent one year on arimidex then switched to tamoxifen for the past year. So far I have not self-combusted. I experienced the usual SEs on arimidex which I tolerated with mild complaining but after a year I developed some neurological problems ( unrelated to breast cancer) that were made much worse by the arimidex. The change to tamoxifen helped the neurological problems and my breast cancer course continues to be uneventful. My tumor markers are in the single digits, not that that necessarily means anything. My labs are all normal. My mammos are ok so far. I too have had a hysterectomy so don't have to worry about that SE of tamoxifen. My med onc advised me to take one aspirin a day to prevent blood clots and I do remember to do that once in a while.
I no longer have sore and stiff hands like I did on arimidex and I do not have leg and foot cramps in the night anymore. My hair is not coming out as much as it did on A but it has not thickened up much either. I do still have hot flashes, mostly in the evenings but I think they are not as intense as they were on A. Mostly I no longer experience the extreme weakness that made me willing to risk a higher chance of recurrence to be relieved of. BUT, as I said, an underlying neurological problem was at the root of my most debilitating SE.
Unfortunately there is no crystal ball here. I'll be happy with my decision if I do not have a
recurrence. If I do, I'll wish I had stayed the course. I have tried to be sure I am doing many other good things like lots of exercise, good diet, weight loss, healthy lifestyle, low stress, etc to make up for the few higher recurrence percentage points the tamoxifen gives me. And it really is only about a 3 percent greater risk in my case. Of course if I am one of those 3 out of a hundred ... Well, I just can't worry about that right now.
Wishing you good luck in your journey here.
Pam0 -
GmaFoley, I think I mentioned in one omy posts that I was waking up with a headache and some nausea that lasted till late morning /early afternoon. At that time I was taking Arimidex late at night. I've switched my time now to 3-4pm and I have to say that I feel better. If I'm having a headache it's happening while I'm asleep and it's not waking me up.I've started taking a few supplements and I think they're making me feel better too. I've started on ALCAR with ALA and CoQ10 along with my usual stuff, fish oil, calcium,D3,Folic Acid and Mag Sulfate. If anyone would have predicted that I'd be taking all this stuff a few years back I would have laughed.Now I'll try anything!! I assume your headaches are better??I'm scheduled for my exchange this Friday and I've got a "wicked" cough. If it's not gone by tomorrow I may have to cancel.I hope not.
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Thanks, PJ123. I didn't have any real bad SE's on Tamox other than knee joint pain, so I am glad my onc agreed to letting me go back on it.
I think the four surgeries in seven months could have caused some of my hair loss. I am using Rogaine for women on the thinner areas, so lets hope I won't continue to get a handful of hair everytime I wash it. I agree, I would rather take a pill for five years over cancer again!
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