Arimidex - Coping with the SE's
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I'm on day 4 of my AI vacation and man can I tell the difference. Sleeping better, fewer aches/stiffness, i have a bounce in my step. I know I have to go back on, but the temorary respite is welcome.
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WaveWhisper, thanks for your comments. I go back to my PCP on April 30th. I know he isn't big on some medicines, but you are right not getting sleep is not good. My husband wants me to take a break from the Arimidex and see if it is what is making me worse with sleeping. I am 64 and started having problems during menopause. I did take Clonipin for a while but this is a new PCP and he isn't big on it either. I am not going to give up because I am really getting worn out from not sleeping and I am a bookkeeper (not good). I just watched a segment on Dr. Oz about being older than your age. Stress was one of the biggest problems along with not sleeping. Well I have both. I can't do much about the stress in my life right now (family issues) but I have to do something about not sleeping.
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Hi, My name is Kathy. I'm 53 years old and I have an 8 year old daughter. I was diagnosed in January and just finished radiation last week. Everything was going well. I started on Arimidex last Friday and lasted 4 days. Saturday morning I woke up and felt itchy. I took a Claritan and decided to ignore it. Same thing Sunday. By Sunday afternoon I was still itching, my heart was racing and my bp was 160/110 (usually 110/80). I felt terrible. Soldiered on and took the pill Sunday night and Monday night. By Tuesday I was a zombie. I called my MO and she took me off it. I will be starting Femara as soon as the Arimidex is out of my system. I assume I had an allergic reaction to it. The problem is that since menopause I react to alot of meds. I actually made a chart of the meds I take with no problem and those I know I'm allergic to (penicillin) or that have given me problems to compare inactive ingredients. The ingredient that the problematic ones have in common is sodium starch glycolate. All the AI's contain it. I am not a scientist so I'm just guessing by process of elimination. My doctor is willing to work with me on this but one itch from the Femara and I'm done with it. I called a compounding pharmacy and they will make me almost pure Arimidex but it will cost $166.00 per month. Has anyone else had a problem like this? Is anyone else allergic to Arimidex? I'm afraid I'm going to be allergic to all of them.
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Does aromasin contain it? I had a problem with the generic made by Roxane but when I switched to the product made by Greenstone it was fine.
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Hi, yes it does. My pharmacist also gave me a list of all the generic makers of Arimidex so I could call them and find out if any of them made generic arimidex without SSG. Every pharmacy uses it in the AIs. It's crazy because that is an ingredient that could be a problem for women with celiac or gluten intolerance.
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Hi - I've been on Arimidex since the end of January - and right away had night sweats. I was prescribed celexa for that and it worked. Lately I've realized I'm unable to cry - even when I should - so I'm wondering if anyone's been through this and what helped? I don't want the hot flashes but want to cry.
M
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I just thought I'd say hello and that I've been on the generic of Arimidex for a year and a half now. Although my pharmacist gave me a paper with at least 50 side effects of the medication and I've had frequent three week "spells" with my right arm, shoulder, back and neck muscles, bones, and joints aching since I started it, my onc. will claim only the hot flashes and night sweats as side effects. I'm not going to quit the pill, I just wanted to complain. : ) I'm happy to report that I managed to get through my 6 month appointment yesterday without a general meltdown - I "close up shop" two weeks before any kind of breast cancer doctor visit or scan because I get so stressed - and have now joined the rest of the human race again until two weeks before my mammogram in June...
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Claudia, hate to say it but instead of shopping for a drug maybe you should shop for a new PCP!!! A good doctor has to have the patient's health and well-being as his/her first priority, and, for you, getting a good night's sleep is now a priority. If the PCP won't work with you, how about your MO?
Again, I repeat what my PCP said. Nobody likes taking more pills, and living with their side effects, but those downsides are ouweighed by the need for a good night's sleep.
As you said yourself, stress and insomnia can age you, if not make you sick. If you can't do anything about the stress, you have to make sure someone listens to you about the sleep issues.
Please keep posting after your 4/30 appointment. I'm going to bug you, because I care about you and want you to be your healthiest self.
I know what a difference a good night's sleep makes. Last night I took my pill at 10 or so and opened my eyes for the first time this morning at 6:45!!
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cvmarilyn-I am in the same situation, although I was given effexor to combat the nite sweats. After a 3 day manic episode last week, I've given myself a break from arimidex to see if I feel somewhat normal again. I, too, thought it was strange that I couldn't cry.
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WaveWhisper...my PCP told me the same thing....take whatever is necessary to get a good night's sleep. Without sleep, any SEs will be far worse.
Sleeplessness causes many problems...hopefully it will just be temporary. I hope all of you having trouble sleeping are taking Anastrozole in the morning (unless for some reason it's not possible).
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Thanks WaveWhisper I will do that. After two more nights of struggling to sleep I have made my mind up that if I don't get anything to help from my PCP I may have to change. I guess I worry that they will think it is me (just changed to this doctor 6 months ago). I was hoping to find a doctor who could manage my immune condition and not have to run to so many doctors. I don't want to take more medicine than I have to but I have to find a way to get some sleep.
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Spunky - it's so weird isn't it? But I think we need to be careful by stopping it.... I guess I'd rather not cry than to have to deal with "it" all over again. I'm just not a medication person so it's weird to HAVE to take something for 5 years - and the side effects..... so I am wrestling with myself over what to take. I haven't taken my Celexa for 3 days now and already feel less "happy" - haven't cried yet though - maybe I need to test myself and watch a really sad movie? DH said that maybe I'm just happier and have no need to cry. Is it THAT simple?
Let me know how you are doing.
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I don't know what to do anymore ... I've been taking anastrozole for almost two years now and am still having terrible SE's. I live in a hot climate, but sleep in an airconditioned room (whew!). Unfortunately, this doesn't help with my night sweats and hot flashes. I have been taking anastrozole in the mornings - would it reduce my night sweats if I actually took it at night? I wake up every night at various times with hot flashes and night sweats and I am soooo tired of it!!! I can't take any other drugs to reduce hot flashes because I also take Warfarin ... Would changing to taking Anastrozole at night help?
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SoLinda, It's definitely worth a try. I had to switch from day to night because I couldn't stay awake. Someone said they took it early afternoon so it wouldn't disturb their sleep. It doesn't seem to matter when it's taken. Good luck.
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SoLinda - likeWren44, I think switching your Anastrozole to a night time dosage is worth a try, too.
I found that eating more bland-type foods for dinner has also helped somewhat with night sweats besides drinking lots of water throughout the day. Also, even though we have central air, my husband bought a free standing air conditioner for our room. We vented it through the closet wall to the basement but I can move it around and then direct the air flow toward me. That, in conjunction with the overhead fan, has helped. I also bought a cool pad at Walgreens which I think gives off a weird kind of coolness but which might work for you. None of this helps me 100% every single night but I know what you're going through and thought I'd offer a few solutions I depend on. Good luck!
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WaveWhisperer--being able to sleep is so important. No point in being alive if you can't live, and you need sleep to be able to live life.
Cvmarilyn--you may indeed be feeling more in control and have less need to cry, but that isn't the whole story. You may be cried out for now, too. Be careful not to go to far off the Celexa, don't get into a depression funk, that's not good either.
SoLinda--I took gabapentin for the hot flashes at night, it helped a lot. Also having a fan going, even just on low helped, too. Taking the anastrozole at night might help, it's definitely worth a try. I've been off arimidex for 6 months and suddenly I am sleeping much better, and I haven't done anything different med wise other than stopping the arimidex and gabapentin. So hang in there, use what you need to sleep until this I over, knowing it gets better on the other side.
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Hi all, I just posted on the insomniac site. Been up all night no sleep at all. Been on arimidex almost 3 years. Insurance not approving my ambien refill. For the last 3 weeks I have had very little sleep. I have tried OTC meds, relaxation techniques, nothing helps with sleep. I work 2 jobs and go to school. Arimidex has caused me to have night and day sweats, achy muscles and bones, weight gain, and insomnia. I am hanging in there with arimidex and hope to be off of it after the 5 year time period. I have a family history of various types of cancers. I am 58 years old, but feel much older with all of these symptoms.
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Hello- I've been away from the board for awhile. I started taking the generis of Arimidex in Oct. 2010. I still have a your "basic" side effects but I was interested in knowing if ANYONE has developed neurological symptoms? I've been to a neurologist but thinking I should get a 2nd opinion. My symptoms started in my scalp! Sharp prickly pain. Moved to my rt.forarm, now in my left foot (sometimes goes up inside of my leg) and now in my back shoulder blade. I get muscle spasms and my magnesium levels are high.? I am osteoporosis, I opt out of RX due to all side effects they have. Trying weight bearing exercises and diet. I have no reflex in both my knees . the dr said "its dead". But No answers. Does anybody experience these symptoms and if not, do you know of another thread that I might poss. find some answers.
Thanks!
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mtks, I have been having a sharp prickly pain in my scalp. I have an autoimmune condition called Dermatomyositis. It is rare and causes skin rashes and I had a problem with my skin and scalp from this. I told my husband I am going to have to go back to dermatologist about my scalp. I have a red patch behind my ear but all of a sudden I am having that prickly pain and thought it was my autoimmune condition. I am interested if anyone else has had this problem. When you have another condition it is hard to tell what the cause is.
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I have the prickly scalp pain also. It began recently, as did my other SE's - after a year of no SE on Arimidex. Didn't occur to me it might be the A. I don't have any other conditions that could cause it.
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This is interesting. It started in my scalp, then subsided, went to my rt forearm- for no apparent reason I will have sharp pains and weakness in my arm. Then it went to my left foot, occ up my leg. Every day all day I feel it in my foot, sometimes numbness. Twice the side of my foot, in the bone just ached. And recently it feels at times I am on an electrical teng unit on my back shoulder blade. It has no rhyme or reason. No rashes. I do get headaches and nausea at times.??? My urine tests for the last 1 1/2 yrs show blood, no infection. Is this normal for some people?? I was told maybe? I dont know what to do? My oncologist ran a CA15-3 blood test - score 8.5 out of 25. I am thinking that,s a good score or he would of called -right? I see him in June. Am I right to just wait? Please keep in touch. I appreciate your communication.
Thank-you, Mariann
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mtks--Yes, some people have blood in their urine without any other issues. No infection, no kidney problems, no nothing. If you are an active person it is more likely that you will have blood in your urine and it doesn't mean anything.
According to Medscape Reference ( a reference site many docs and nurses use) The reference range of serum CA 15-3 is less than 30 U/mL. so your result of 8.5 is what we call "negative". In your case the number needs to be higher than 25 U/mL to indicate anything going on. BTW, CA 15-3 can be elevated in benign breast disease (cystic breasts, infection, abcsess) and by breast cancer treatment. The difference between the Medscape number of 30 and your test number of 25 is because different test kits/techniques/labs have slightly different reference ranges. A reference range is the range of results that are considered normal.
The most important thing to know is the CA 15-3 number BEFORE treatment started. 25% of breast cancers do not cause an elevated CA 15-3. The only way to know if the test is helpful for monitoring for recurrence is if the CA 15-3 was high before treatment started. If your Ca 15-3 was high before treatment, and is 8.5 now you have had a really good response to treatment.
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mtks...I also have traces of blood in my urine. Can't be seen by the naked eye but after a cystoscopy (all clear) and a CT scan on my liver, it was from several harmless hemangiomas (benign tumours made up of blood vessels).
The urologist said there would always be some blood in my urine but not to worry unless it became visible. That was 15 years ago and everything has been fine since.
Perhaps a cystoscopy would put your mind at ease...a very quick test!
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Sorry to just hop in out of the blue..Whined last time I was here about falling down 12 stairs last June and breaking lots in both arms..still don't use mouse with right hand BUT hopefully after more surgery to remove two plates the pain will be better..BUT I am doing lots more !!! Anyway more good news finished arimidex a week ago and wondering if anyone who might have finished the five years had any side effects going off it TY in advance..
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Ouch, Sharlene!!! I was done in September. Haven't noticed any difference at all....good or bad.
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THank-you for the info and input, I appreciate it! It helps to know that. So does neurlogical symptoms fall under Arimidex SE?
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lakewoman--OUCH! You poor thing! I went off Arimidex last October. Since then I have noticed a few things, like having more energy, less pain and stiffness in my hips and back, arthritis in my knees isn't as bothersome, sleeping better (this is just in the last few weeks), able to think better, remember better. Overall I feel more like my actual age and less like my mother's age. Give it some time to clear out of your system. Take something for 5 years and your system is going to need time to get back to normal.
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ty nativemainer and Ruthbru for info ,,much appreciated Will be patient hoping for bit more mental clarity less hot flashes and for sure I hopt to feel less like my 96 yr old mom energy wise soon Course with PT and whole much of other stuff from concussion the fall took a lot of of me..PLUS I had vertigo and had to have vestibular PT to get crystals put back in inner ear,,Course could not do those rx's for 3 months cuase of arms even with PT as one has to flip on bed hahhaha...Called Eppley maneuver worth knowing about on youtube!..I lucky only had dizzys getting up and down and on bed in middle of nite ALSO had to go to onc to rule out skull CA and multiple myeloma cause of all tests I had and showed things that had to be ruled out..PT son said if radiologists saw the face of the Blessed Mother they would have to do further testing hahahha ..TY again for always being here and your answers I will let you know in few months what I see different!!! Congrats to the two of you on your 5yrs and to those still taking med prayers for you!!!!
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I have only been on Arimidex for two months and today, my onc agreed for me to take a month off and see if the SE's I'm having are from it - epic fatigue, bone pain, itchy hands and arms, tingly scalp, etc. He was very honest and basically said there are no real hard numbers as to how much it helps reduce the chance of recurrence, just that it does. We talked a lot about quality of life and he said it's my decision and he understands that quality of life should be the most important thing, as long as I accept that my risk now is a bit higher. I have never wanted to be on this medication and I don't think I'm going to go back on it. I'm going to do a lot of holistic things - losing weight, getting my body in better shape, eating better, juicing, and continuing to maintain my Buddhist spirituality to help with other aspects of my life. I love my onc because he does listen to me and doesn't make me feel like an idiot when I talk to him about things like chanting and essential oils for depression and other things. I know he'll support me no matter what my choice.
So I guess I'm just saying, do what feels right for you. That's the most important thing.0 -
Life, I met with my MO this AM because of the extreme joint pain and stiffness from Arimidex...I've been on it almost a year and the SE have gotten worse. She's going to take me off it for 4 weeks to see if the pain subsides significantly. If it does, she will switch me to another aromataste-inhibitor, to see whether the SE are less. If, after 4 weeks, I see no difference, I'll go back to Arimidex and figure out whether PT, acupuncture, yoga or pain relievers can keep me going for another 4 years. No matter what, I'm not going to drop it, since my tumor was heavily estrogen-driven and I think an AI is my best defense.
As you said, each of us has to do what feels right for us.
Good luck.
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