arimidex-side effects
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Hello Everyone,
I have enjoyed reading these discussions, and was shocked how many ladies had the same side effects as I did. As the Dr. and Pharmacists say the side effects only happen to a few. I was diagnosed with Ductal Breast Cancer in July 2011 and had a partial mastectomy Sept 15th 2011 and started taking Letrozole Nov. 2011 and had Radiation for 5 weeks in Dec2011 and Jan 2012. My Family Dr. noticed my liver count was up after about 3 months, so we kept an eye on it, by 7 months it was pretty bad so I contacted my Oncologist who is 3 hrs away from me in Victoria. I was at that time scheduled to see an internest, my local Dr. thought I had Autoimmune Hepatitis, I didn't believe that so started to do some homework myself and found Letrozole could damage your liver. Apparently there is a 4% chance. So I contacted my Oncologist again and she took me off Letrozole for 3 months and then put me on Arimidex as my Liver count was improving. Started Arimdex Sept 2012 had my liver tests done in 1 month, 3months, and again in another 3 months, my liver count was back to normal. So I thought I was okay on the Arimidex. NOT! Can't remember exactly when my side effects started, the hot flashes and night sweats were right away ( a bit of trivial info, I sailed through Menopause with hardly any problems, just a few hot flashes) I think I have almost everything mentioned in these discussions, headaches on and off, hot flashes, night sweats, carpel syndrome, numbness and tingling in my hands, sore back, neck and ankles (sometimes when I get up I think my ankles are going to break) I think I will ask my Dr. for a bone density test ( I had one about 10 years ago and I was great, they said at this rate I would not have osteoporosis even at 80) I have insomnia ( I the one that friends laughed at all my life, my head hits the pillow and I am asleep and even a fire engine going by doesn't wake me) Well not anymore, I might sleep for 1 1/2 hrs and then am awake for 3 - 4 hrs, go back to bed at 5 am and sleep till 11 or 12, that is not life. ( This for a person that friends used to call the energizer bunny, on the go all the time, not anymore. I take extra Calcium for my bones and now have constipation. I put on 20 lbs. with the Letrozole and was so proud I had lost most of it, forgetting that was during the time the Oncologist took me off of the Letrozole, that is why I lost it. Well not on the Arimidex I am back up 12 lbs again. I go to the gym every second day. I have been going to the gym for 12 years. But was off for 1 1/2 years due to the breast cancer and moving. Just been back for 4 months now. But not getting my energy back yet. The exercise always worked to give me more energy before, but not now. Some days I just feel like I am dragging my butt around. Would just love to go to bed, but won't let myself. Somebody mentioned lack of motivation, well I have that too, never had that in my life before. And saying all this, I went through the operation and doing a move at the same time and starting a new relationship (to the most wonderful man in the world, we had just got together when I was diagnosed and he was there for me all the way, went to all my Dr. appt and everything, thank heavens for him) made it through all this just fine, sailed through the radiation, but now I feel like an old lady, me that said I would never get old. And worked at it too. But on the other hand I don't think I would go off the Arimidex as I also said I would never die LOL!!. I have too much left to do. ( Both my parents died at 66 my Dad from Cancer, Mom was unexpected) So when I got cancer, I just said sorry Dad I am not ready to join you yet. Well I think I hit everything, sorry it is so long, I just had to get everything in
PS I forgot to add I am taking a laxative, a sleeping pill and Aleve for the pain when I have to and my Vit D and Calcium, me that never took any medication before, Will I ever get back to normal.
All the best to each and everyone of you, Keep up the good fight. You are worth it.
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Hi there ladies,
I’ve not posted for a while – partly ‘cause this forum didn’t seem all that active. Anyway, I just wanted to say that I feel for all of you who are still dealing with this stuff and I know what it’s like.
I was only on the stuff for six months (my story is documented in earlier posts) but had the pain, on top of existing arthritic issues; I had the insomnia and dizzy spells; dry eyes; and the hair thing – my hair is very fine to begin with and now its also getting sparse. I don’t suppose I can really still blame the medication but hair loss was very difficult to accept and wigs and scarves just don’t do much for me.
So, anyway, after lumpectomy and six months of Arimidex, I just passed my 3-year checkup – no sign of anything my doc says. Not homefree yet but considering my minimal treatment choices, it seems to be looking good.
I’m feeling pretty good. I’ll be 64 in a couple of weeks. The arthritis is much worse than it used to be – Arimidex? – not sure. I know the symptoms escalated on that little white pill and while they subsided when I went off it, things never returned to pre-pill state. Much of my get-up-n-go got up and went at the start of this whole experience. I don’t blame this on the pill really, but I do blame the experience to some extent, the rest is just life. I've buried my 91 year old father, and attended the funeral of a friend who started on this same journey about the same time I did, and I've consoled my niece who lost her partner to lymphoma in January.
Take care of yourselves everyone.
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Hi,
I read this forum a bit before I started taking Arimidex last August. I was happy to be prepared for side effects and hear from women who are taking/have taken/have stopped taking this drug. I just thought I would share my experience for those are reading now and wondering how can I handle this for five years...
My experience has been really good overall, I am so lucky and I know that. But for those out there who are worried I just wanted to share. I had some insomnia for the first month, drove me crazy but it went away. I have had some joint pain, but I try to move a lot and it is not severe at all. I am 55 and who knows, I might have had it anyway. Luckily, no hot flashes so to speak, some here and there, some night sweats but really no worse than what I had going into menopause, lucky, I know. I have cut out red wine totally as it really seems to trigger them for me. I have some carpel tunnel side effects, wake up at night with my fingers numb, used to wake me up a lot, still bothers me a bit but not as much now. It comes and goes, no effects during the day. I feel like. I have energy and feel good.
A year ago, I was waiting for my UMX and now I am two weeks away from tissue expander reconstruction, first stage. I am so excited. I know it is best that I continue to take Arimidex for four more years. I am not saying that I love that but I am okay with it.
Not all women have really bad side effects. I hope this is somewhat helpful.
Karen
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I am on Arimidex two and a half years now and along with the pain, stiffness etc., I have also got numbness in my left arm which keeps me from sleeping at night. Now I've got it in my right arm as well. I can't remember when I last had a good sleep. I also get really painful muscle spasms in my back, I don't know if they're related. I'm 70 and have had Arthritis for a long time, but never as bad as since the Arimidex.
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Hi Joan,
I have had several courses of steriods for severe asthma while on Arimidex and didn't notice any difference. Hope you'll be alright.0 -
I have been reading the posts on this forum, and not sure whether to feel shocked or comforted by the fact that so many of you are suffering similar symptoms to me whilst taking Anastrozole. I had BC and MX left in September 2012, and started taking Anastrozole in about October. I had Grade 2, Invasive and Non-Invasive, and was lucky in that I did not need Chemo or Radio, but the side effects from the Anastrozole are becoming quite unbearable. The worst is the joint pain and stiffness, particularly in my knees and fingers. I feel that I can hardly stand or walk sometimes - it is as if my knees will not support me; and getting down the stairs is really difficult. If I get up from sitting, even for a short period, I feel like the proverbial 90 year old woman that other people have mentioned. Even my 98 year old neighbour is more mobile than me! My finger joints have swollen and are so stiff, particularly in the mornings when first waking up. Also, I have put on loads of fat around my middle, which was not there before, and it is very difficult to shift. Also, get depressed about things which I never did before - I was not sure if it was through having cancer, but now put it down to the drug. I am 63, working full time, and was previously fit and supple and did loads of exercise and walking, but now find it difficult to walk very far, but force myself to. I realise that this drug is prescribed to stop the cancer coming back and extend my life, so will stick with it but it is certainly difficult to live with, and I am counting the days until the end of the magic 5 years, and sincerely hope that the symptoms will subside then, if all the damage to my bones and joints are not irreversible. I take Calcios daily (calcium and Vit D), as well as cod liver oil, and high strength glucosamine, but none of it seems to help.
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I have been on Arimidex for 6 months. I will be 64 in the fall. I had a single mastectomy in April 2012, followed by chemo and radiation. Chemo was horrible...lost 50 lbs..worried that I could not tolerate another dose about half way through. To me radiation was exhausting but I did not think it was going to be fatal. Chemo was vicious. I have had night sweats...hot flashes since starting the medicine. In the last few weeks, I have also begun to wonder about the daily diarrhea and now the fierce joint pain in my hands. It wakes me up at night. My hands are stiff, I have trouble getting my rings on and off but they do not seem swollen. Is this from Arimidex? I have been taking yoga lessons for the beginning of the year. That has really helped by balance, my strength and my general well being....but these other things are beginning to really worry me. I am working part time. I will see the plastic surgeon later this summer and learn my options about reconstruction. I think I will just list these issues to my oncologist next month without questions and see what she says. If I do not get the response I want, I will quiz her. Do I want to gamble??
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Three years on Arimidex...have lots of side effects, weight gain, insomnia, sweating day and night, foggy mind, stiffness in joints and muscle pain. Lately the muscle deep achiness has been really bad. I am so stiff and sore throughout the day. Walking is difficult. I ride exercise bike and try to walk on my treadmill. I turn 59 next Friday and feel 100. I work full time, sit down job. Joined weight watchers and got tired of counting points and focusing on food. Just want the muscle pain to stop. Been on Meloxicam for pain and inflammation of arthritis. Two more years of Arimidex to go to reach my five year mark...ugh!
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Hi. I have been on Arimidex for just over three years and this past year has been the worst. My arthritis has got really painful, can hardly walk on my hip, have restless legs at night, have developed cataracts in both eyes, just had the second cataract removed. Hands are so painful can barely write and had an operation to release trigger finger in right hand, now need the same on left hand. In the last six months have woken with hair soaking several times a night. Sorry to moan so much, but sometimes feel like crying with all the pain. I feel this is definitely a case of the cure being worse than the disease. Will keep persevering with Arimidex of course. It's nice to have somewhere to let off steam as no-one really understands except those of us going through it.0 -
Davina,
Sorry to hear you are having such a rough time of it. And yeah, it really does help to unload on others who understand what you are dealing with. Dump away!
I did decide that the "cure" was worse than "risk" and quit some time ago. Nearing the four year mark and all is still good. We all must make the decisions that are right for us.
Take care.
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I've been on and off all three AI's for almost 2 years now, This last go round with Anastrazole made my Achilles tendons feel like spikes. With every step it feels like a spike is poking me inside my ankle. I'm taking a brief vacation from the pill, it's been 10 days, and my ankles have improved already.
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I have finished week one of Arimidex and am so week and tired, brain foggy, no motivation....can this appen this fast? Feel worse now than radiation fatigue that I finished on Dec. 24th.....5 years of this I can't imagine..body feels bloated, everything aches....very depressing...any suggestions...drinking Ensure for vitamins
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HBwoman1,
A week sounds a little soon but everyone is different. I felt fairly good for the first month.
If you had radiation and perhaps chemo I'd be more suspicious of those being the cause of your symptoms. I skipped those two but I understand they can drag on for a while. Talk to your doc. Try to stay mentally and physically as active and positive as possible - I know it can be hard. This whole process is depressing enough without the side effects.
To repeat something I've suggested before - keep a diary. Set yourself up a document (I used a spreadsheet - Excel) and keep a record. Start with a note as near as you can remember of how you felt the week before you started and then make an entry once a day, preferable at the same time each day.
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I took Arimidex for 5 years. I took it a short time and my hands started aching. I tried every arthritis medication on the market and it did no good. My GP had x-rays taken and said that it wasn't arthritis. I had this for about a year. One day I woke up and miraculously it was gone. Shortly thereafter, it started in my feet. Fortunately, that only lasted a few months and then went away. There aren't any other explanations for it so I assume it was caused by the Arimidex.
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FranfromFL,
Interesting.
My totally unprofessional opinion:
Perhaps the explanation is similar to that for the "trigger finger" that's been listed as a side effect. When I looked it up, as I recall, it's related to the tendons - lots of tendons in fingers and toes.
Perhaps something like an ultrasound might give more information but probably only when it's acting up. I know when I was on it I had some issues with "clicking" finger joints (a mild "trigger finger" thing I thought) and really painful thumbs - I could not find a comfortable position for them while driving. That's mostly gone away, the remainder is likely arthritis - got that all over the place (lol).
Are you still on the pill? How are you doing? I'll be getting my 5-year checkup in another 6 months - so far so good.
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Hello ladies...new to this thread. I am 61 and started Anastozole in March 2013 after rads and chemo. After over 1 year I have morning stiffness and stiffness when walking. No weight gain but I really watch that....up about 5 pounds since finishing rads but I had lost 8-9 so I am about even. Hair is growing slowly but I trim it alot so that may contribute to it......Less than 4 years to go....will keep at it for now.
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I think there's a category that goes till 65 and then the last one is 65+. I'm 73, diagnosed breast cancer stage 2b, luminal B, according to K67 index 21 I had, sep 2012, mastectomy dec 05-2012, first AC 4 every 3w, and then Paclitaxel 12w. No problems during chemo, life as normal as ever. Now on Arimidex for 4 &1/2 months bec' my liver did not have 2 good-processor alleles to use Tamoxifen. Recently found out vision diminished considerably probably because of very large doses of prednisone every week (120mg) to avoid allergic reactions to Cremophor (the thing they use to dilute Paclitaxel, which is not water soluble)
Now my steroid count has gone down to < 5.00 pg/ml. Isn't that too low for your general health and immune reactions to illnesses?
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Hi, this is my first posting here. I had IDC and had a lumpectomy and went through radiation. I have been on Arimidex for 2 1/2 years. I also have fibromyalgia and osteoarthritis. I just stopped taking the Arimidex to try and figure out if that is causing my problems or if it is the fibromyalgia or arthritis. I was so stiff when I would get out of bed I could hardly walk and when I would sit and get up it would be similar but not as bad. If I did a lot of walking during the day I would pay for it at night. I also have hot flashes during the day and night sweats that are constantly walking me up. Fatigue is one of the side effects I get from the fibromyalgia and that has gotten worse lately so I wonder if the Arimidex is affecting that also. I am 70 and think the quality of life is important. I had a complete hysterectomy around 10 years ago also. I guess I will wait and see how I am feeling in 6 months or so. Reading all your posts helps me realize I am not alone. I usually never say how I feel as I don't want to complain when so many people have it worse than me.
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To all who quit Arimidex....I just want to encourage people to consider is it the Arimidex or is it the generic....I only took the generic for 2 months...Then I switched to the brand name...Month one I paid for it out of my pocket at over $400 because insurance would not pay...Then I ordered from a reputable Canadian store and got it down some..It is a long story but I get the real thing from Europe now...I have NO side effects...I am convinced that the generics out of India are inferior and are combined with binding agents that give people some of these side effects...I would love to hear from someone else who is on the Brand name med.. I am in the medical field and had a little knowledge and motivation from working in the industry. thanks Carolyn from Music City
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I’m experiencing severe foot pain. I have fibromyalgia all the stuff that comes with that. Living with activities has stopped. I have been taking Arimidex for over 3 years now. Since taking Arimidex I’ve experienced hot flashes, joint symptoms (including arthritis and arthralgia), weakness, mood changes, pain, back pain, sore throat, nausea and vomiting, rash, depression, high blood pressure, osteoporosis, fractures, swelling of arms/legs, insomnia, and headache. The weight gain is awful and my ankles have taken on a new shape. I understand that Arimidex stop your body from making hormones. About 14 years ago I had a total hysterectomy with removal of both ovaries. I’m 63 my body isn’t producing hormones. I had stage 1 breast cancer. Surgery to remove it followed my 6 weeks of radiation therapy. My oncology told me that I have 4 percent chance of my cancer returning. She put me on Arimidex for 5 years and now I’m thinking of discontinuing it, I’ve really started swelling up and the feet pain is something new. Fibromyalgia is awfully painful and the Arimidex adds to too what’s going on with my health
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I'm experiencing severe foot pain. I have fibromyalgia all the stuff that comes with that. Living with activities has stopped. I have been taking Arimidex for over 3 years now. Since taking Arimidex I've experienced hot flashes, joint symptoms (including arthritis and arthralgia), weakness, mood changes, pain, back pain, sore throat, nausea and vomiting, rash, depression, high blood pressure, osteoporosis, fractures, swelling of arms/legs, insomnia, and headache. The weight gain is awful and my ankles have taken on a new shape. I understand that Arimidex stop your body from making hormones. About 14 years ago I had a total hysterectomy with removal of both ovaries. I'm 63 my body isn't producing hormones. I had stage 1 breast cancer. Surgery to remove it followed my 6 weeks of radiation therapy. My oncology told me that I have 4 percent chance of my cancer returning. She put me on Arimidex for 5 years and now I'm thinking of discontinuing it, I've really started swelling up and the feet pain is something new. Fibromyalgia is awfully painful and the Arimidex adds to too what's going on with my health
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I have been on Anastrozole for 7 months now and have had very little side effects. Weight gain and a few more jot flashes. I was put on Tamoxifen 15 years ago when I had my first go round with cancer after BMX and 4 rounds of AC. I had a terrible time with it and went off of it after 3 years. I take 400 :mg of Gabapentin daily as well as 40mg of Paxil and bone pain and hot flashes have been manageable so far. Will be starting 4 rounds of TC followed by 6 weeks of radiation. Hopefully it doesnt affect me when I go back to anastrazole for the next 5-10 years
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I've had the top of feet pain for about a yr. I just started this med. about a month and a half ago...and it seems worse. (along with knee pain). I do take dbl Vit D. But will try the magnesium also. Anythings worth a try!
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