Arimidex - Coping with the SE's
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Unfortunately I agreed to try fenodidrate for a month and started it about a week ago. I have an appointment to get my levels checked in about 5 more weeks. If no change, then I'm going to switch to the niacin approach. I'm having hot flashes from lupron and arimidrex anyway, so that really isn't much of an issue for me. I took Lipitor years ago and it was miserable, I hurt all the time and could barely move. Made Arimidex look like aspirin. Won't go there again and now that I know what causes that kind of muscle pain if it starts I am DONE with the Rx drugs.
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I have had high Cholesterol levels most my life due to genes. I have tried so many drugs and had problems on them. I am currently trying symbastatin. Not sure I spelled that right. Anyway..I am already having cramps in my muscles...not normal cramps. I would try the Niacin but my mom and brother both had reaction to it as well as the statins. So I am not going that route.Zetia was the longest one I was able to stay on for over a year before the cramps kicked in. So keep trying ladies.
I started weight watcher this week. Eating more than I have since before DX. Hope I loose next week.
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Kitty - I have been on Weight Wathcers. It's a good plan. Right now the weight is coming off real slooooowwwwwwwwww but ounce by ounce it is coming off but I'm sticking with it. I hope you have quicker results!
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...and I still hate Arimidex!
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I'm a weightwatcher lifetime member. It's a very good program. I may eventually go back to meetings, but now I'm trying on my own.
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So, if I am on a statin, which I am ...and I am on arimidex...and if my cholesterol goes up, then they change the dose of the statin, is that right? he idea of more heart problesm has me terrified to even have the prescription filled...I did not like breast cancer or he trip it has taken me on this past year and a quarter..but i walked out of the hospital the same day...I was in for four after the heart attack and felt like someone had been pounding on me .......I felt weak and scared and very very mortal...I am new to pills...I asked my oncologist to order a bone density test so there is a base line to go with..guess I should go see my GP , get the flu shot I keep telling others to get and get a slip for another cholesterol test in a month...how fast does it raise your cholesterol? I did bring my cholesterol down 1.4 points in a year with diet and exercize but post heart attack, I have no choice but to be on the statin.
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Sandeeonher, I struggled with whether or not to go on Arimidex as I already take 80mg of Lipator for high cholesterol and have been on statins for the past 30 years+. Heart disease is very big in my family, NOT BREAST CANCER, and I spoke to several cardiologists as to what I should do. They all felt that with close monitoring including routine echo cardiograms I Should be fine. I would have preferred to hear that I Would be fine. I started Arimidex in July and I've been experiencing some heavy duty fatigue( not a good thing for a tennis player in the middle of a 3 set match), and moderate joint pain in my knees and hands( also not good for a tennis player). The hot flashes are still coming hoy and heavy. Thank goodness for the change in the weather.If things doin't progress any further I'll be able to deal with this, not sure I want to but for 5 years, but I'll try.
Barbara
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I've been on A for 6 months now. I had my ovaries out a year ago and then 6 mos later my onc switched me from tamo to arimidex. I didn't have too many SEs in the first couple months, but now, as some others have mentioned, I'm feeling more and more joint aches and stiffness. In fact it was so bad last night I couldn't sleep at all after the trazadone wore off (which I take to be able to sleep - very bad flashes since starting Lupron, and continuing after having the ovaries out). I also take Effexor 225mg and Gabapentin 1200mg daily for the same purpose.
Over the past couple months the arimidex SEs have been worsening. If I sit still for a while, I'm so stuff I feel like I'm 100 (I just turned 47). I have always been athletic and have continued to exercise since diagnosed (well, after healing from surgeries). At night, I am so achy in my bones or joints I just cannot sleep after the trazadone wears off, which usually gets me about 4 hours. When I get up, my finger joints feel as stiff and swollen as if someone injected them with embalming fluid. ha ha. My hips hurt all night and can't get comfortable. My feet become stiff as boards and of course the hot/cold cycles just goes and goes endlessly.
My onc recently told me that I can switch to Femara if I want, but I hate to exchange a known set of SEs for an unknown set. I just need to get through 2.5 more years of this stuff. So, here's what I am going to try:
1. magnesium (at night, I already take vit d)
2. gin soaked raisins
3. advil in the pm and am
4. continue keeping active (I ride horses, cycle, do gym stuff like yoga, step class, weight lifting)What else should I be trying???
Andrea
Haven't read through this entire thread (c'mon, over 3,000 messages, I'm not that fast!) But this is what I've gleaned from what I have read.
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Andrea, you shouldn't forget Vit D3, it is very helpful for bone and joints pains!
Did you check your D3 level?
Best
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I was on Arimidex for 2 weeks. The first night after I took it I had leg pains that felt like someone was hitting me with a baseball bat. Over the next two weeks I had teenage acne, my hair was falling out, constipation, dry eyes, stomach pains, etc. But the worst was the high blood pressure and rapid pulse. I am normally resting pulse of 72 and BP of 100/60. My BP had shot up to 165/95 and my pulse was erratic - 90, 120, all over the place. If I went for a walk I couldn't get more than 100 steps before it was up to 120. Forget jogging. I have been off of it for roughly 3 weeks. My BP is back to normal but my pulse is still doing 'weird stuff'. The Med Onc gave me a new prescription - Aromasin this time (exemastane) and asked me if I thought the Arimidex was out of my system. I asked the pharmacist how long Arimidex stays in the system and he said 10 days. I am well past 10 days so hopefully no permanent damage was done.
I am on 20 mg Pravastatin (Pravachol) - genetics. My cardiologist told me I could eat only vegetables and drink 29 cases of red wine and it would not have a significant enough impact on my lipids. She did also suggest doing the slo-niacin as she knows I won't take a higher dose of the Pravastatin. I had a bad reaction to Lipitor - shortness of breath that took 5 months to go away. I do see her next month so probably need to get on the stick with the slo niacin. Very concerned about what will happen with the Aromasin - it is steroid based and steroids and me don't get along very well. I would like the pulse to go back to normal before trying yet one more drug. If this one doesn't work, even though I am post menopausal, Tamoxifen will be the drug of choice......assuming I can take that. Anyone have bad reactions or side effects to Aromasin?
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High cholesterol does not always lead to heart disease. My mother's side of the family has very high cholesterol. My Gram always had it in the 300s and the doctor was always after her about it. She was on pravacol and niacin and I don't think it was ever below 300. She died at 94 of pneumonia.
My cholesterol is in the 240s and has gone up just a little on Arimidex. I don't plan on taking anything but niacin. Lipitor can be very hard on your liver, which keeps trying to crank out the cholesterol anyway. As long as my dentist keeps checking my carotids with his fancy digital x-ray thingy and keeps telling me they are clean as a whistle, I'm not going to worry. I'm usually pretty compliant when it comes to health issues, but this is one thing that I feel strongly about.
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I've been on it now for about a month. I have only noticed aching in my joints and some stiffness in the morning. I'm doing yoga and muscle flexing to help and it's working. I also do weights and cardio.
So a plus for me. I have lost all Estrogen which had been a huge booster to my sex life. I freaked when I thought I'd have to lose my mojo by using arimedex since I'm using Prozac for hot flashes (it's working) and this AI stunts estrogen development. What it does provide however is testoterone and I was very pleased to learn I can have a sex life again. So some good side effects for me.
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Just Staying you sounds like all my complaints. The oncs just don't get the side effects. They look at you lik you are nuts. My fingers are so swollen and they are on fire. My feet are sound asleep as I write this. My golfing is more and more difficult because of the hip and knee pain. I just buried a dear friend who didn't survive., so I'll hang in there 4 more years.
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Not sure where to post this but I really need to rant! I saw my new MO today (my original one just retired). He is the in the same practice as my original. For being a new patient to him he really wasn't paying attention to what I was saying. He asked me a few questions and then I proceeded to tell him a little bit about me - such as I had a hyster/ooph last year and I am having joint pain and some hot flashes. He then asked if me if I was in menopause - WTH! I told him with my hyster/ooph that makes me in menopause right! He then asked me when my last mammogram was - WTH again! I had bilateral mastectomies with implant reconstruction. I told him I didn't need one anymore. He obviously didn't read any of my chart before he saw me today. I am pretty mad right now. Now I have to find another MO because I don't have much faith in this one.
On the briight side - appointment went well and I don't have to go back for six months (that gives me enough time to find another MO)
He also mentioned that Vitamin E sometimes works for hot flashes. I never heard this before. Has anybody heard of this?
Sorry this was soo long but I had to get it off my chest before I explode!
Donna
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I've had that happen, too, when seeing someone new or someone different in the practice. I've decided from now on that I'm going to say "Obviously you haven't had time to read my record and properly prepare for this appointment. I'm leaving now and will make an appointment for a time when you are better prepared." Then I will tell the desk person EXACTLY that as well, and request an appointmment for a day whe the doc will have time to prepare. If I'm 15 minutes late I get cancelled, but the doc can't take 15 seconds to read a chart? Makes me FURIOUS!
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HI All,
Just want to join the gripe session! If this disease has taught me anything, it has taught me to be my own advocate and to "shop" around for a doctor who will listen. I love my onc (went to 3) because he tries to treat the 'whole person" , he responds to email, and he is at a top cancer center in Boston. One that I met along the way was simply a bit tired of it all and it showed - totally professional, but long ago detached from any individual interest in particulars.
BobbieMaire,
Good luck with Aromasin! Remember, you can always stop if it doesn't agree with you, but definitely give it a try. I had a really hard start with Arimidex, but am working through the issues as they arise (joint stiffness, higher B/P and now higher cholesterol). Still, most things have antidotes (or you can try another drug, thank goodnes, if one is really bad for you). I wish you the best on this part of the journey.
Have a great weekend everyone! Beau
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Native - I like your idea! I am going to call the New Patient Coordinator that I talked with to book that appt. and tell her how I feel. I still can't believe the questions he asked me.
Beau - I also believe that you have to be your own advocate when it comes to your health. I know that doctors are becoming very busy but that doesn't mean that they have to be uninformed of your situation.
I've got to say my favorite dr. is my PS - he really does listen no matter how busy he is!
I definitely am looking for a new MO. Hope I can find a compassionate one this time.
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OK - so I have heard that Prozac can help the hot flashes. Not excited about taking drugs to treat side effects of other drugs but I know the AI hot flashes are MUCH more intense for me than my normal run of the mill hot flashes.
Are their other supplements/vitamins/foods/diets that anyone knows helps the SEs? I was doing acupuncture and it was helping but my insurance doesn't cover more than 20 treatments and out of network pretty much nothing is covered. Not many around that are in network up here in MN. Any reference books anyone has found to use?
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Is anybody else here as fed up with Arimidex as I am? I've only been on it for 1 year and I've decided to stop it. I'm taking two more Rx's for side effects which do nothing for the worst one--which is my aching hips--sometimes hurts just to sit and if I walk too much, I'm out for the next day. Can't take NSAID's for the pain because it conflicts with one of my other meds. So I'm thinking I'd would rather have quality of life than quanitity. I just can't bear to think I need to be on this for another 4 years.
I see my MO in 2 weeks and I'm going to ask if there is a second tier option (not just tamox. or another AI).
The first time I had BC in 1987, I was on tamox. for 1.5 years and stopped it because of side effects and was put on megace--which I loved--I felt great on it, but gained a lot of weight. So I'm hoping there is maybe something like this this time or I might ask to go back on megace since it worked for a very long time for me.
Anybody else thinking the same thing?
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VJSL8 there are other AIs. Some may not give you the SE like Arimidex. Have you checked out Aromasin (chemical name: exemestane) or Femara (chemical name: letrozole)? Is going back on Tamox an option?0
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Iago--I was told Tamox was not an option--plus I had bad side effects with that the first time. The more I think about it, Megace sounds very atractive to me--if I can get a handle on the weight but I felt great and could exercise--which I find almost impossible with Arimedex. Worked for a very long time the first time around.
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BobbiMarie and VJSL8 - have you tried glucosamine/chondroitin and Vit D3, both may give excellent relief from joint issues. They did for me but I know we are all different. Also, are you browsing the alternative threads? There are probably plenty of tips on things you can try to ease the SE's of Arimidex. Just a thought as I don't go alternative but know it can be of value.
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I've tried both, still taking them since I've heard it can take a couple of months for it to take effect. And I do plan on getting my vit D re-tested to see if it has come up at all.
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Here's something interesting I read in a magazine today:
Florida State universary researchers found that women who eat 6 to 10 prunes a day have significantly higher bone density than women who nosh on other fruit. "Prunes are rich in potassium and boron, which are known to increase bone mass," says study lead author Bahram H. Arjamndi.0 -
Thank you Ruthbru! I just started prunes. With all the vitamins and calcium, I had to do something for regularity..LOL
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How about just eating plums? The original prune, right?
I want to say that I am in my last months on good old Arimidex and I have changed my diet significantly. I eat no animal, fish etc and no animal products, diary etc. I have a few nuts and seeds and lots of whole fruit, vegetables, and lentils, beans, brown rice. I am constantly cleaning up my kitchen and cleaning veggies and fruits. It is more work. I will do my blood work at the end of November and let you know what my numbers say.
I don't have to cook for anyone else, so for me it is so easy to make such a change. I am almost two months into it. I have dropped some pounds which has made my achy knees much better and better bowels which you probably didn't want to know. As you all know Arimidex is a pill that gives back in positive and negative ways. I am sticking to the program and taking charge of my life in all the ways possible. Eight more months!
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I have the most delicious recipe that makes vegetables taste so good that you don't even want to eat bad stuff (as much anyway).
Line a cookie sheet with tin foil, cut up a whole bunch of any combination of vegetables and dump on the pan. Coat lightly with extra virgin olive oil, sprinke on some dry taco seasoning mix, stir around. Bake at 450 for 15 minutes, stir and bake 15 minutes more. YUM!!!
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Ruth you might want to try this spice too (notice no salt): Ratatouille Seasoning0
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HI VJSL8,
I am sorry to hear that you are having such a rough timr on Arimidex! I am now 9 months into the journey and things are slowly getting better, but it takes a lot of work, tinkering with meds, diet, exercise, etc. I too am havie significant joint aches, plus I have three herniated disks in my neck that went nuclear when I went on Arimidex due to more arthritis through out my body. However, I continue to tinker with medications and diet to try to smooth things out and it is definitely helping.
Have you tried a muscle relaxer such as diazapam (this can be used in different ways, but I started a 10mg dose and it really helped.) There are many muscle relaxers out there and often the pain we feel is related not only to the inflammation in the joints but the muscle spasms/pain around the joint.
You could also consider taking a small dose of pure oxycodone (5mg), which is the pure opiate without any NSAID in it for pain relief. I used that at first before my doctor tried a msucle relaxer and it reallly helped.
Defintely look into your vit D as that can also be part of the picture. I continue to experiment with my diet as well. I am cutting way back on dairy (and alas coffee) and I found that it has really lessened my pain.
In any event, if you really are at peace with your choice to stop Ariimidex, I wish you all the best., I do think, however, that given that this is your second recurrence, you should be sure that you look deep into your heart to be sure that you have really comed to terms with the possibilty that a 3rd recurrence, god forbid, is not out of the question. Please think about at least trying the other AIs to see if they are easier on you or trying some things like about to help come with the pain. Constant pain is not something that you should have to live with, no matter what!
I am probably in a different position from you - I have 2 kids who are 10 and 13, so I feel that if I ever quit and it came back (and believe you me, there are days, when I want to go AWOL), it would really haunt me. I want to do everything that I can to be here to see them grow up. Of course, that doesn't mean that I won't have a recurrence (ro get hit ny a bus for that matter), but when I looked into my heart, I felf that is what I needed to do.
I wish you a safe journey and peace with your decision. Good luck!! Beau
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