Arimidex - Coping with the SE's
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This is an interesting thread. I learn alot here!
Last night i took just 1/4 of a phenergan about an hour or so after I took the arimidex. I slept soundly and without nausea like the night before. I know it might not last all day- but I know just getting good sleep helps!
Sounds like the joint pains/trigger finger are common and later effects? I have been still a little stiff/sore/numb from the taxotere (I am 7 weeks PFC). I haven't noticed it getting worse- but it is hanging on.
Hope everyone has a good day.
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Just want to chime in here about the SE's - I have been on Arimidex for a little over a year and I have to say that some of my SE's have went away! I sure hope this continues. Up until about a month ago my hips really hurt - especially when I was sleeping and getting off a chair. It was so bad that it would wake me up at night. The weather here has really been hot so not sure if that has something to do with it or not but I'm not complaining! Or maybe it is from the amount of time that has passed on this drug.
At my last onc visit I asked for a different medication and he gave me a prescription for Aromasin. I did get it filled but have not started taking it yet. I was waiting until August to start. I'm wondering if I should just continue with my Arimidex seeing that I am feeling better or start the new one. Any thoughts?
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I found that it did take almost a year for my body to fully adjust, if you are finally feeling better, my thought is that you might not want to switch and maybe start all over with new SE (or maybe not)....I'd probably stick with Arimidex, if things get worse again, you could always switch at that point.
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don23 - I have just recently started experiencing hip pain again at night. I can't sleep on either side so falling asleep is very difficult for me and I have started taking a pain med at night so that I could sleep. I have been on Arimidex since March 1st. Why is it taking this long to have this SE?
I am really physically active which makes me wonder how I would feel if I never did anything.
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I would also advice everyone to get their Vitamin D levels checked too. Vitamin D is a big deal.(From what I've read it should be between 40-80 ng/dL). Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly. And adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors.
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jancie
when sleeping becomes difficult for me, I try to start out sleeping on my back, with a GOOD pillow under the back of my knees to keep them slightly elevated. If you're near a medical supply store, you'll see all the selection of illows for this purpose, they have. THEN, I went to an Army Surplus store, borrowed a friends electric carving knife, and outside the house, cut a pillow for myself. Covered with a pillow case - in a few nights, hips were fine.
ETA: It's the MAGIC 3 month phase. Honest, there's gonna be a study, I'll bet, in a few years about the different "phases" our bodies go thru on The A Team. Betcha' really, and the 3 month point is when the sh-t really kicks in for so any of us. THIS TOO SHALL PASS. Really keep up doing all the good things listed on these threads - it will go away!
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About how long will be taking Arimedex.. My Onc also told me it will probably be 7 years.. And I 'm either getting used to my SE's or they are getting better.. Just finished with all my Doc appointments for the next 4 months Yippy!
Vitamin D also is good for the memory too ..it didn't take much to get it up, I am only taking 1000 along with 400 in my multi-vitamin and it up already since my last blood tests in Feb. vitamin D also helps with the absorbing of calcium ..
Have a great week ladies!
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once again, this forum saves my sanity! i swear, i thought i had bone cancer, i've had so much achey pains these past few months. especially in my hands and feet. i thought maybe it was my generic statin, so i stopped that. now i realize, it's probably the anastrozole that my onc switched me to, after 2 yrs on tamoxifen. i stopped taking it 2 days ago and i'll discuss with my breast surgeon next week at my checkup, but all signs point to going back on tamoxifen for me. this is nuts!
anyone who's stopped A, how long does it take for the pain to diminish?
so loading up on D3!
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At the risk of repeating myself, let me say that my aches and pains from A have subsided about 90% after starting Effexor last month. I was prescribed it for terrible hot flashes, but it has also relieved my stiffness and pain. Before you give up on this life saving drug, you might want check out all of your options. I had no idea that Effexor (and many other anti-depressants) have off-label uses such as relieving the hot flashes and fibromyalgia-like pain induced by the aromatase inhibitors. I also take D3 but have been on that for over a year now.
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It is good to repeat ourselves for new people who come on board and might not want to wade through 93 pages (wow!) of information. My thing that I keep repeating is MOVE, get some exercise. It will really help with the creakiness. And, also, give your body time to adjust. It has been through a lot. Some SE you may be atributing to Als, are really cumulative SEs from all your treatments mixed together.
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Amen!
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Jo,
You should probably say "se's are easier treated than breast cancer for most people"
I fell into the category of the 27% of women whose se's (mainly palpitations from the AI's) could be life threatening.
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painterly, as with all things there are always some people who find they can't take the SE's. For me it was the chemo. As my Dr's said if I was to continue it would very likely kill me. I am glad I can take the Femara for that reason.
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Amen to the exercise, Ruthbru. I took your advice about that and know it is helping too. Plus I've lost 15 lbs!
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two weeks on this and my knee pain returned and today I have back ache. Fingers never stopped hurting with my week off of Femara and them starting this one. ugg I will agree that the more you move the better it feels.
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Beau I was born at the Beth Israel. Not deaconess back then. Don't remember a thing.
JO you are so right about the D levels. My onc wanted to be sure my were up before I started Anastrozole because they were low prior to my diagnosis. I had been taking extra D and was tested before but she wanted to make sure. She mentioned that most women who get bad bone/joint pain (don't remember which) because they are low on D. One thing I do notice about my onc is she is all about reducing SE if possible.
My NP told me the most common SE from Anastrozole was small joint stiffness (fingers & toes) that will go away once you start moving again. I take mine in the morning.
Ruthbru it would be nice if I lose the stiffness in my legs in a year. It's not terrible but I wouldn't be upset if I dont' have to deal with it in the future. I hope that's the case… or when I stop Herceptin (3 more tx) maybe that will help.
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Way to go shelley!
Lago, I hope you lose the stiffness too. I think once you are done with Herceptin, then your body can finally start getting back to normal. This is tough stuff you've been doing!
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I never stopped moving, so can't comment on the small joints problem. However, I do feel fab after today's 30+ mile training ride. Was slow at the outset, as hadn't cycled since Sunday, and have a very sore ankle (from wiping out cycling a month ago!). Was just fine once I got my groove back.
Lago.....am sure you will be just fine. Tough road, but you are nearly there.
Shelley.....congrats on losing 15 pounds. Way to go!!!!
Sitting here, I am noticing I am once again "sore of butt". Wasn't this morning. Somehow doubt this was the Arimidex. - Claire
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Sunshine/Sunflowers - the pain I am feeling is not in my hip joints like it was from Taxol.
Instead it seems to be soft tissue pain. If I press in on the outside of my thigh as you would if you were sleeping on your side, I am very very sore.
I can't fall asleep on my back - my other choice is to sleep face down which is what I am doing most of the time now. I don't see my oncologist until August 10th so I will talk to him then.
I may need to go visit the pain clinic again if this keeps up.
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Claire- if I rode 30 miles I would be sore of butt, too! I get sore riding 3 miles (the longest so far). I'm not an athlete so it is taking me a long time to get my endurance up. Plus we have hills that kill me! Maybe I need a different seat?
I do have stiff hands every morning and can't hold a coffee cup for about half an hour when I first get up. It wears off though.
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Hi Shelley.....
You get used to some of the soreness. I don't even feel my glutes this morning. Anyway, concentrate on building up endurance, and you will be just fine. The hills will get smaller too.
A lot of this is building up strength and lung capacity. Although I was cycling at least 20 miles at least once a week all through treatment, I didn't get mine fully up to speed until about 5 months post radiation.
True confession. There are hills I walk. I just consider this "cross training".
When you get up to more like 15 miles at a go, you will need to revisit your gear. They make padded cycling shorts and tights for a reason!!!
Which reminds me I need to get mine on as have a ~20 mile group ride planned in a bit. Just the most perfect day, and a new route. I already told my friend Jim to expect me to walk some hills. - Claire
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Thanks for mentioning the tingling in your feet and hands. It has been driving me crazy. Especially when I'm sitting or driving in the car. Dr. just said it's one of the SE.....yeah right, easy for them to say.
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Rohana, I know it's no comfort, but I took my fifth Arimidex and threw up 4 hours later. I am going to take it in the evening tonight. Has your nausea passed?0
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you're right, i didn't have the patience to read 93 pgs!
my bad!many thanks to the repeaters ... i'll take under consideration.
since tamoxifen was fine for me (except for the hot flashes, of course), i'm thinking my docs will be ok with me just going back on - although i fear the uterine cancer risk. then again, i really don't want to risk permanent osteoarthritis and/or fibromyalgia. i already have arthritis and back pain. i realize movement is key to preventing pain and atrophy. i'm trying to get back into daily instead of once-a-week yoga, and i know i need to start walking again. but i have a hard time working thru the pain. (which is comical, considering how much surgery i've been thru!) but the way i feel right now, i don't need a questionable (for me) drug making it worse. i'm already on an anti-depressant: sertraline (generic zoloft). i was weaning off, after 4 yrs, but now i'm rethinking that.
as with so many cancer treatments, we have to measure the risks vs. the benefits. i gave up a healthy breast and underwent (probably unnecessary) radiation as strictly preventative measures. hormone therapy has been a no-brainer up until this switch. but now i'm back to the risk/benefit thing again. damned if you do, damned if you don't. *heavy sigh*
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Lisa810
glad you got what you needed. I started a "thread" in this Forum Arimidex SE "Specifics" to try to keep it succinct in another thread - there may be somethings we wrote there that might help too. It was jsut getting tooooooo long to expect women in PAIN to read through it all.'
For all the things I do, I still say ACUPUNTURE and MASSAGE make the greatest difference. After than Vitamin D, getting my Throid mediine correct, and GLUTEN free.
Claire and JO are so correct about activity, movement, and I am a slouch...a certified slouch!
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Thanks,Jo, I am better, I took it in the evening. I tolerated it better, I think I will be fine on it. Seems like with all the vitamins, multi and D and flaxseed oil, and levithyroid, so many pills. I am spreading them out during the day. I noticed that you have grade 3 also, can you tell me anything about that. My doc never mentioned it, I have had to read my own path report. What does 90% ER+ mean?0
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Ladies: Hello, if my labs come back the way Onc and I thinks, I will be starting Arimidex this week... So are you ladies ok with me joining you???
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Lisa810 - I am also on zoloft and it has really helped my mood swings but not the hot flashes. I had to get off of Zoloft when I started on Tamoxifen as those two drugs interact with one another. I was glad to get on Arimidex and start the zoloft again. I had tried other anti-depressants and nothing worked except for Zoloft.
I am still having muscle pain on the outside of my thigh - this is frustrating me as I had finally gotten past the pain of my fractures to my humorus (sp?) bone. I am back on pain meds at night so that I can get to sleep as it just hurts too much to lay down.
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GMAFoley - welcome to the thread!!! Let us know how you are doing when you get started.
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Welcome, GmaFoley!
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