Arimidex
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Hi All,
I've been on Arimidex since Jan and in that time I've had three episodes, each lasting about 10 days, of blisters and sore spots in my mouth. Has anyone else had this? This condition is listed as a s/e under "incidence unknown" on the Anastrozole (Oral Route) webpage on the Mayo Clinic website. I'm sure it's either due to the dry mouth symptom or directly b/c of the drug.
Just wondering if anyone else has experienced this.
Bethany
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Hi everyone,
I have been on Arimidex for a little over a month and so far, it's not too bad, at least pain-wise. I feel a little creaky if I've been in one position too long, but once I move around I'm fine. I developed a nodule at the joint at the base of my right thumb after about two weeks, but it doesn't hurt--still, it wasn't there before the Arimidex. There is one odd thing going on regarding my balance. I feel that I am listing to the right sometimes or if I get up from a kneeling position I might stagger to the right. Also, when I am tired, I feel as though my gait is different--again, a slight staggering. My husband says he doesn't notice it. Anyone else have balance issues?
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I did this too, but was changed over to Aromasin with the same old side effects.
Sorry.
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Hmmm, balance - might have had that also but, you never know what's related to meds or if I was just clumsy a couple of times. It's good to have various posters and experiences because then we become aware of what might not be 'normal'.
No blisters or sore spots, etc. in the mouth - ouch, that can't be fun!
Not cranky; some stiffness but that could be normal aging? I know it's only been a few months but I'm just not entertaining the idea that it will become unmanageable - that's my story and I'm sticking with it.
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Patoo,
"I know it's only been a few months but I'm just not entertaining the idea that it will become unmanageable - that's my story and I'm sticking with it."
Ditto! I'm very grateful that there is a pill that I can take to prevent recurrence (We hope). Our triple negative sisters have no such option.
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I've been on Arimidex since mid-March and so far the side effects have been somewhat unpleasant, but manageable. Something strange happened to me last night, which may have nothing to do with the Arimidex, but I'm wondering if anyone else has had a similar experience.
I woke up about midnight to go to the bathroom and felt really chilled and shaky (it's not cold here!), so I put on a robe, socks, got an extra blanket and went back to bed. Then I started to shake and twitch and moan because I was so uncomfortable and I had absolutely no control over the shaking and twitching. My poor husband got up and tried to help, but it just wouldn't stop. Anyway, this went on for about 3-4 hours and then I fell back to sleep. This morning my legs, arms, back, neck and head hurt, but the shaking has stopped.
Ed wants me to call the doctor, but I'm hesitant to do that because this just happened last night and seems to be getting better. Anyone else ever have something like this happen?
Bonnie
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Sounds like fever symptoms.. You should check your temperature if it happens again. I also see this in patients when they come out of the OR after surgery.
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Keep a journal so if you end up going to the doctor you can show the history/progression of anything that seems "strange". Docs may take it more seriously if you show a daily listing rather than just sitting in front of them trying to recall everything you went through.
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Rose -- I didn't have a fever, but it sure did feel like it. Today I'm tired and I hurt all over, but am otherwise okay.
Good idea, Patoo -- thanks.
~Bonnie
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Thanks, I have them occasionally - now if I would only take my own advice! Gonna start a journal right now.
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Has anyone else on arimidex been diagnosed with "trigger finger." I was diagnosed with this yesterday by my orthopedist and frankly it didn't occur to me that it might be related to the arimidex until I just googled "arimidex trigger finger" and came up with all sorts of info that suggests that it may be the arimidex causing it! (I've also had much more generalized hand pain lately). With the "trigger finger" I woke up one morning and couldn't bend the thumb on my right hand. Now the thumb alternates between being either not bendable at all, or it is like a light switch: it will bend to a bent position with difficulty and then it will "pop" back into a straight position, but there is no normal movement. It hurts! I spoke too soon about not having any major side effects from this drug. The treatment is lots of advil and a splint (if you are right-handed, try doing anything without being able to use your right thumb!). If that doesnt' work they give you a cortisone shot, and it that doesn't work, surgery! I would love to hear if anyone else has had this problem!
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kamico -- I've read that trigger finger is fairly common as an Arimidex side effect, but don't know anyone who has actually had that problem from the Arimidex. My nephew has a trigger thumb that will require surgery and he just came with it -- he's only 3 years old. I also have a friend who has dystonia and had surgery for a trigger thumb that was a by-product of the dystonia.
I'm still feeling crummy -- serious headache and body aches and a very low grade fever this morning (99.3), but no other symptoms. It is probably just a virus, but if it continues until Monday, I'll see the doctor.
Have a great weekend, everyone!! --bonnie
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Well...tried the Aromasin for a month....this is almost worse for me than the Arimidex, but in different ways. I am going to the Natural Girls thread....I have gotten a little information from one gal on there, and I am checking this out. I have to believe there is a better way or a natural way to block the estrogen. Something safer. I still know first hand how drug companies work, and there are not enough facts back about these drugs and the long toll effects they leave with us. If I am feeling this bad after 8 months on one, and one month on another...how will I feel in 8 years?
At least, I need to check it out and see what the studies show.
Good luck to all of you, I hope that your toleration of these AI's are better than mine. I think I did better with my chemo sometimes than this.
xoxo
Lisa
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Wow! I just found you all while snooping around on the internet. Why I didn't look before this, I don't know! I have been on Arimidex since lumpectomy & radiation was completed almost 3 years ago. I didn't think I had any side effects but have had weight gain, periodic hot flashes & sleep issues. I didn't think any of these were related to Arimidex since I am too rapidly approaching 58 years of age and assumed all was age related rather than drug/cancer related. Perhaps I should re-think that.
At this point, I am scheduled for a breast MRI on 7/15 because of discomfort & thickening of my surgery-sided breast. Lymphedema is suspected but the MRI is scheduled for (I hope) confirmation of that. I am still paranoid each time I feel a twinge, chill, itch, cramp, yada yada yada. I am hoping that the MRI will relieve some of my anxiety and I can proceed to address the lymphedema issue.
I loved the quote of "Life is not just about surviving the storm, it's about learning how to dance in the rain." It was on an earlier posting. Great! I'm engraving it in my mind.
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kamico, I had trigger thumb also. My thumb would get stuck down and I would have to use my other hand to pop it back straight. I had a cortisone shot which got rid of the trigger. I'm having a lot of problems with osteoarthiritis in my thumbs now though, and also with carpal tunnel. I am trying to get an appointment with a hand surgeon now. I sleep with a brace on my wrist and take celebrex which helps some. It would be nice to be able to use my hands without experiencing pain though. Opening jars is especially a problem. I was on arimidex and quit because of side effects. The hand problems are better since I quit but not better enough. At least for me I think a lot of it is just wear and tear from 56 years of use. Regards, gandl
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I won't give in. I won't give in. I won't give in. I won't give in. I won't give in.
That's my story and I'm sticking to it!!!!! (despite extreme fatigue and achy joints this weekend)
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Judee, welcome!
I hope you find here the support, encouragement and just plain information that helps sustain us all as we move forward. I hear you on the testing paranoia
, and I'll join you in hoping it's "only" lymphedema!
Do let us know what you discover -- we're all here for you. When you're ready, do check out the "Lymphedema After Surgery" board here, as we have lots of gals there (myself included
) who are dealing with truncal (breast, chest, back or side) lymphedema. Be well!
Binney0 -
I am new in this website but I decided to have bilateral masectomy than to continue taking Arimedex, my brain is fogy, no to account the join pain, back ache and all the rest.
I stopped taking arimedex a month ago since I am having the surgery in September. My brain is still fogy and I keep forgetting important thinks, like to make a bank transfer to cover a check or myown phone number. Keep forgetting names, words, places etc....
I am not giving up... AND WILL NOT, it has been 13 years since the first lump. So far I have been lucky ... I want to continue been lucky.
Ladies any expirience with side effects after stopping Arimedex. Please...
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My friend has IDC and had a lumpectomy in June. She starts radiation soon. She will also take Arimidex and would prefer to start it after radiation, not before or during. Is there any real harm in waiting until radiation is over? She's concerned about radiation SEs in combination w/ the SEs from Arimidex. She has arthritis and is over 70. I'm concerned after reading all the reports here about bone pain. Any information would be appreciated!
Lottie
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Hi mythreegirls - you'll find information on natural hormone blockers in the cancer-related forums on http://crazysexylife.com. The site was created by Kris Carr, a young woman with tumors in her liver and lungs who advocates lots of complementary treatments and healthy eating. She did a documentary for young women in 2007 called Crazy Sexy Cancer.
lottie
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Hi lottie...some of the ladies on this thread started their arimidex after their radiation and others, including myself, started it during rads. Personally, if I had to do it over again, I would talk to my oncologist and let him know that I want to wait at least a month or two after radiation is finished before starting the arimidex. That way you would have a better feel for which SEs are left over from either chemo or chemo & radiation and which SEs are from arimidex.
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I've been in terrible pain since last Thursday and will see my primary doctor this morning. I have deep joint pain and muscle aches, along with a low grade fever that comes and goes (seems to be gone this morning), but no other symptoms. It's possible that all of this pain is from the Arimidex -- I've been on it since mid-March and went through rads from the end of April to June 8th. My body is not happy about something and it's too painful to do much of anything, including sleep. Thanks for being here. --bonnie
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Lottie - I started Arimidex a few weeks before rads but I had no significant se's from rads. I am now 7 weeks post rads.
Bonnie, I'm mirroring you somewhat in tx. I started Arimidex the first week in March as well and did rads April until mid-May. This weekend I did little but was very fatigued Sat and Sun and had joint pain in wrists, ankle, right knee and hip. I think in the 4 months on it I may have had a low grade fever once or twice at most. Occasionally I will have trouble falling asleep but Tylenol PM takes care of that. So far the joint aches are not really too painful so I'm just being watchful until I return to my med onc next month for follow-up.
I am still in denial as I had some problems with my hip pre-bc and I'm on the computer all day which can account for the wrist pain. Same with sleeping - I always wake at least twice a night for a potty break but then and now I can immediately fall asleep again. I really don't think I can place all the blame on Arimidex because a lot of this comes with aging anyway (I'm 60).
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Lottie (That was my mother's name but spelled without the i),
My story is fairly similar to your friend's. I was diagnosed with IDC in February, had two lumpectomies (first one did not result in clear margins) in late March /early April and then had accelerated radiation (twice a day for five days) in mid to late April.
I am one of the few women I've heard of whose surgeon started them on Arimidex before the surgery. So, I've been on it since Feb. 26 and haven't had any significant side effects, except for hot flashes and some night sweats, both of which are manageable so far. I also did not have any side effects from the radiation but it was accelerated (balloon type) radiation, sometimes referred to as Mammosite, or brachytherapy, radiation.
I hope this is of some help to you and your friend.
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I had a mast last Dec and have been on Arimidex since Feb. No chemo or radiation, my margins were clear. I do have some hot flashes in the evening but sleep OK with the Tylenol PM. I had a hysterectomy in 1990 and took estrogen for over 25 years. My downfall. No bad symptoms. I'm going to be 72 in Aug and only weigh 88 so I haven't had any weight gain. Maybe women without bad symptoms aren't replying.
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I saw my primary doctor today about all of my aches and pains and she thinks it may be a reaction to the Arimidex plus inflammation from my low back (herniated discs) and neck problems (bone spurs pinching nerves). She ordered blood work and a UA to rule out other problems and will have the results in a day or two. In the meantime, she prescribed a long acting NSAID and Vicodin. I'm not planning to fill the Rx for Vicodin unless absolutely necessary because that will turn me into a vegetable, but that might be better than being a person who cannot move without pain. Take care everyone.
Bonnie
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Evening everyone - I started Arimidex before Rads. I had staph and it delayed the rads for 6 weeks. I have the joint pain and I have trouble opening bottles. When I can't get my wine open then I'm unhappy. I have trouble doing my stitchery work too. When I get up from sitting I feel like I'm 90 and I am only 57. Rained all day and it was a lazy day. Starting day shift on Tuesday for 3 days. My nights sweats aren't as bad as they once were. I sometimes have to take ibuprofen to get some sleep from the aches. I do take my meds in the AM. Hope everyone has a great day. Joy
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DENTHOMAS,
I, too, had a hysterectomy (one ovary left) in 1989. By 1994, that remaining ovary was "pooping out" and so I was put on Premarin. In those days, Estrogen was "the best thing since sliced bread". I was on it until the day after my breast biopsy this past February (almost 15 years). The surgeon told me it didn't look good before the biopsied tissue even left the exam room. So the next day I went off Premarin "cold turkey". In hindsight, I think all the symptoms I had felt when I tried to get off (or lower the dose of) Premarin several times over the 15 years were in my head!
I started Arimidex the day after my receptor report came back showing 99% ER+.
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I had a total hysterectomy in 1995. No HRT until the hot flashes got out of control. Then went on Estratest (combo estrogen and progesterone) and took it for 10 years. That gave me three precursors for BC - 1) never gave birth 2) hormone replacement and 3) early menopause. When I started the HRT my ob-gyn mentioned bc but did not say anything about the other 2 factors increasing my risk.
Had fatigue again yesterday. Wrists still bothering me. One thing I need to do is get motivated to exercise as I know that will help. Just having trouble getting there.
Blessings.
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Hi,
My blood work showed that my thyroid function is too high, which will mean a medication change, since my thyroid was removed years ago. It also showed slightly elevated liver function, which may be the reason for all of the aches and pains. The doctor made some minor changes to my meds, told me to drink lots of water and if the symptoms don't improve in a couple of days, they'll do another blood panel. Hope everyone has a good day. --bonnie
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