Arimidex - Coping with the SE's
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The gluten free approach is helping many women with the joint aches, pains and stiffness. It's recommended for people with arthritis, too.
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Oh, thank you NativeMainer.
I have a bit of arthritis so it's hard to tell if the anastrozol has made it worse or not. It sounds like gluten-free may be worth a try.
Thank you!
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Many of hte ladies on the board have posted that gluten free helped them greatly. I don't do gluten free, but I don't have that much joint pain, either, so I can't give you any more info than what I've read. I'm sure some of the ladies with experience will be along shortly to add thier experiences.
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sandiddstn and Beau -- the blah's and crying have broughtme to this formum today. I've been on gen arimidex for a little over a month and for the last 2 weeks have been crying at one thing or another. Today, I'm in bed feeling blah. I'm almost at my full strength dosage of Lexapro so I'm not sure what the Onc will suggest. I just want to stop and get "me" back. I start lymphedema therapy tomorrow at 7:30 am (I am NOT a morning person but with so many dr's appts, I don't want to piss off the boss-man). LT will be M-Th as I'm only Stage 0-1. I feel like a bloated cow today and my smaller boob --- by bc boob that was radiated 30 times - is bigger! Just can't catch a break. My teeth moved during chemo so off to the dds tues to get fitted w/a retainer. Of course Wed rolls in the ob/gyn 6 mo oil & lube appt - oh joy, followed thurs w/my 1 mo follow up w/the onc. Lots of head-nodding from the dr when we discuss my side effects. How can I get switched to brand name and does it make any difference i wonder? Friday brings consult #2 w/an orthopedist because my good knee keeps popping out when I walk -- just down the hall, nothing strenuous.
God help us all and continue to show us your amazing grace.
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Hi FaithFollower,
I am sorry that you are feeling so down! You are still in the thick of being a "professional patient', which is depressing in and off itself. I can relate. It is overwhelming to be sore/miserable on so many fronts at the same time. I am glad that you sent out an SOS. Just try to find a way to pamper yourself or treat yourself to something - you deserve it. I also would work with you doctors on your anti-depressant meds. I don't take an anti-depressant (yet! I will if I feel that I need it), but I have doubled my dose of alprazolam at night to help me sleep.
I have had some really bad days since starting Arimidex. It is a daily struggle to stay positive and keep moving. I don't always win the battle. I have re-grouped since my really down days recently by making a few changes in my routine and getting in to see my onc this past Friday to discuss how to keep going.
To help with my headaches and blahs, I have started to take my NSAID and arimidex at the same time - it has really helped with the headaches. I am back on a half pill of avapro (my blood pressure med, which is both lowering my blood pressure and calming me down a bit.) I have cut out all caffeine (I hope this is temporary!) I am doing more yoga, walking and meditation. I also got a script for a pain pill to take once a day if needed, which really helps when I am in a lot of pain ( I have a new herniated disc in neck plus the arthritic pain that lots of us seem to get on AIs.). I am adding 1000 iu Vit D and 1200 ui calcium along with a few other supplements. I am just trying to take it one day at a time and trying not to focus on the fact that this part of the journey could last 5 years.
I think the "big" adjustment is that I have decided to accept the deal with the devil: I will take arthritis and other ailments in return for a lower risk of breast cancer returning. I am not sad, but I have accepted that I can not get back to the "old me", at least not now. I can enjoy my walks, my time with my kids and husband, lots of things. I just have to deal with pain on a daily basis and manage it as best I can.
(Please don't take offense, anyone), but when I feel myself falter, I go over to the Stage IV board and learn how much more courage those women have than I do. They fight a much tougher fight. It reminds me that while I have my challenges, I need to find joy in every day. Folks here on this thread and on this site really inspire me to keep trying.
I hope that your troubles quiet down a bit so that you can catch your breath. Peace, Beau
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I've been on arimidex for almost 4 years, generic the last 5 months. My side effects have been different over the last 4 years, some came and went, some stay. High blood pressure is a result and I'm on meds. I really do not have much joint pain or stiffness, not much different from before this all started. I chalked it up to older age
.. I'm happy to be able to have this med. 0 -
Hi beau,
Thanks for your true saying! I just copied your words to my diary to read this occasionally, when I'm in bad mood. because of AI's.
Greetings!
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Beau, and others taking calcium
Please remember it's best to take Calcium with Magnesium - proporations are 2 to 1.
My pills ( I need 9 a day to get this) are 1200 calcium/600 magnesium. That and the Vitamin D3 have really helped eliminate the joint pain. Also, blood tests for Vitamin D level- best to get it above 50. Mine was about 17 after chemotherapy - and takes 4,000 ius a day to keep it at 47.
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Maybe that's why I don't get joint pain. I'm on 1000IU of D3, 800IU D (including what's in my multi vitamin) and 1200mg Calcium. I'm doing that because I had low D and slight osteopena.
Edit:
My D levels were very very low 1.5 years ago. Now they are a little high but my MD says it's OK.
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HI All,
Sloucha, thank you for your kind words! Let m know how you are doing with the journey you are all on. I am sure that you have challenges too! Sunflowers and Iago, I have an appointment with my PCP this week to go over all my meds and supplements and I will ask to get my Vit D levels tested.
Sunflowers, I do take a Calcium pill that has magnesium and zinc added, but I just grabbed it off the shelf (without realizing it had the magnesium in it). How come it is important? (I can also ask my PCP, but I am not sure how much he knows in this area)
I am definitely making progress with the joint pain. I am sure that the Vit D and calcium are helping, along with some other adjustments. I do find the healthier that I eat, the better that I feel. I drink alchohol much less than before my diagnosis ( i used to have a glass of wine or two a night, but now I drink only 1/week) The other night we were out with friends and I had a whole lot of champagne. It was definitely fun, but I noticed that my knees and feet, etc felt much worse the next day.
My big challenge is still the herniated disc in my neck ( I see a specialist about getting a steroid shot mid May). I am sure that the Arimidex is aggravating that pain plus the carpet tunnel in my hands.(which I never had before) Still, things are improving and I am determined to hang in there.
I
I am very grateful for this thread and this site - it has really helped me stay positive even when I have my "melt-down" moments. Best, Beau
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Just wanted to post something positive - the number and severity of my hot flashes since I started generic arimidex in feb 2011 are decreasing! Hope it continues 'cuz at one point I was ready to give up!
Joint pain is a little up. Dry skin too. Nothing I can't cope with thouigh.
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Hi, beau and other ladies,
After my DX-s the first information about healing of BC was given to me at our Institute of Oncology with some links to web sides in USA, England but Germany. So I found Breast Cancer.org. was reading all about healings and medications and after a long time I arrived to Discussing boards. I'm so happy to find these sites. So, I'm here now and I'm very grateful to discuss with ladies in the same situation.
I was found triple positive after my lumpectomy, accepted the complete medical treatment, (6x chemo with Docetaxel (Taxotere), 30 rads, one year on Herceptin), I'm on hormonal therapy (Femara) for 5 year now. It's one of aromatase inhibitors with similar SE's. The first two months I felt nothing special, than I got terrible knee, join pain, but my ONC. said "it works". I was taking ibuprofen for six weeks, then I took Vitamin D3, for a while it was better, later I also have so much bone and muscle pain, stiffness, arthritis, depression too. I finished my first year! I found it the heaviest of all therapies before, because of this long duration. As painkiller I take ibuprofen or a pill of 30% tramadol with 70% paracetamol. Now I‘ll try Glukosamine.
I'm eating healthy and however I discovered that a little glass of beer before sleeping reduces my pains at night. (beer contains natural estrogen???!!!)
I see we all have the same SE's that cherish mi up.
My best wishes to all! slousha
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My SEs went away so gradually that all of the sudden I thought, "Oh, wow....I haven't had a hot flash & didn't feel creaky when I got out of bed in the morning." So hang in there everyone!
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Ruthbru...
I sure hope you're right! I've only been on generic Arimidex for 6 months and it's making me batty. I got a little depressed about my se's this weekend. I hope for better days ahead! Your posts always make me smile, by the way...
Rose.
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Laughter is the best medicine! That or gin........
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Preferably both.
xoxo
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true; and one might lead to the other........
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You are funny, Ruth. I have a new symptom I wanted to ask you all about. For the last two weeks or so I have been getting weird "zinging" in the muscles of my my hands. It sort of feels like when you hit your funny bone, that strange electrical feeling. It has been happening when I twist things like a jar lid or when I open my car door handle with one finger. I'm 44 so I'm attributing anything strange to A since I'm not taking anything else. I have been tolerating it pretty well up until now with only stiff hands and feet in the morning. The stiffness goes away after I move around, but this hand zinging is happening periodically throughout the day. I work in a lab and dropped 3 pieces of glassware last week.
Anyone have any experience with this?0 -
I had off and on 'zinging' electrical shock feelings from my chest all the way down my rib cage for a long time after radiation, but never in my hands. Anyone else?
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I've had numb toes, nothing with hands. Onc doesn't attribute the toe thing to A but what else could it be?
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Maryblast my onc and NP said that I could get stiffness in the small joints like the hands and feet (toes/fingers). So far though I don't have it. My NP said it goes away once you move around like others have reported.
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Hi Sloucha and ShelleyJ.,
Sloucha, I am glad that you found this site to help you sort things out. Sounds like you are pushing ahead despite pain and discomfort, which is really courageous. Keep it up and keep us in the loop. I hope the Femera does the trick. I just don't let myself think about 5 years - it is kind of overwhelming. At the moment, my onc has said that the science is murky on whether I should do 5 years of Arimidex or 2-3 years of Arimidex and then switch to Tamoxifen for last 2-3 years. Apparently, the big studies show that breast cancer re-currence is lower for the AI only group, but overall survival is best for the group that starts on AI and switches to Tamoxifen. There may be more studies in the next two years that help clarify what course is right.
I mention this because on my bad days, I tell myself that I am 1/12th of the way through my Arimidex journey (2 months out of 24). I know that this may not be true, but it makes me feel better. One day at a time.....is really the way to go.
Hi Shelley, I have had some shooting pains/tingling in my hands along with Carpel Tunnel in my wrists. I went back on my 100 mg of B6, which I took during chemo (taxotere). I think that it has helped. I also am wearing wrist spints at night. In any event, it doesn't seem as noticeable as before, although it may be that I am getting used to it or the B6 is helping. Good luck with it - hopefully, it will just come and go and not get any worse.
Best, Beau
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Hi Beau,
It is actually better today, I didn't have any zingers at all. Maybe it will come and go as you said. Didn't break anything at work today, so that is good. I do have one wrist spint if it gets that bad. I don't work on the computer much so hadn't considered carpel tunnel, also it is in both hands. I have some B12 but not B6 so I'll have to get some and try it. Thanks for your reply!
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No tingling or zinging in my hands, or anywhere else. But my hands and wrists are very stiff and sore when I wake up. As a matter of fact, today was the worst yet and my left hand still hurts. Onward and upward!
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Both my Med Onc and my primary ask me about 'zingers' and pain and stiffness in my hands, both have told me that carpal tunnel syndrome is associated with taking an AI. Neither of my docs will do anything more than suggest I wear braces at night until after I get done with arimidex (Oct 2012, I htink). If it continues after that then my PCP will refer me to an orthopedic doc for eval and possibly surgery. I've got to admit the braces at night make a big difference. and they are not specially made ones, just ones I bought at a local drug store.
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Hello Everyone,
I've just been diagnosed with stage 4. The doctor is going to start me on armidex tomorrow. I read up on the side effects and frankly, I'm scared.
Reading this though, it doesn't seem quite as bad as I was fearing. It does sound, from reading this, that exercise helps keep some of the side effects at bay.
Any suggestions on where to read up on the nutrition?
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Hi Sole,
Sorry to hear your news about stage 1v, but hoping for the best for you! I think some of the Alternative threads have things on nutrition. I also found the Dana Farber website useful. They have a nutrition section - I used it while going through chemo and it was very useful.
To those of you with zingers in hands, carpel tunnel, etc. I agree with Native Mariner's onc that I would never get surgery since it may well disapear when I go off AIs, but I am thinking about getting a steroid shot to see if it will take down the inflammation. Anyone else done that?
Best, Beau
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Hello,
Does anyone get their generic Arimidex from Roxanne Pharma? I think they are located in Ohio, but I'm wondering where the drug is made? I'm hoping in the good ol USA?? I currently have a prescription from Karaflex from India and want to change...
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Hi, Sole,
Joining everyone in "welcoming" you to the club no one wants to join ;( Don't worry about thr SE's of Arimidex - really, most of them go away in time - and it IS effective. That's what keeps me optimistic about taking it.
Nutrition: Having adequate Vitamin D in blood seems to help keep joints feeling good! There is a blood test your doc can take to determine your blood level of Vit D. Most docs suggest keeping it up near 50. Also, those wrist splints if you do have hand pain. I wore them, and they really helped. My hand pain was bad, so I also went to a Physical Therapist who specializes in hands, a few treatments & doing the exercises she told me to do, and I was fine in a few weeks.
I also get a monthly massage, AND, see an Acupuncturist - I call those two wonderful women the
Bookends of My Well Being." Just love them - there is "antectdotal" ( as in no scientific clinical trials, yet!) that the acupuncture especially can help relieve joint pain. It was suggested by my oncologists at Dana Farber, as something to try. I live too far from Boston to see the Acupuncturist at DF, but I took their advice, and see a woman who lives near me, monthly.Sorry to hear you are IV, you'll find there is a Special Forum for Stage IV women on BC.org. Hope you are doing well, and feel free to ask any questions about Arimidex here.
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