Arimidex - Coping with the SE's
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I don't know if this is normal or not.
I already had arthritis in my knees and my left ankle, but now, my feet hurt. Even when I'm lying down at night. And if I stand for any period of time, my heels hurt and I have to shift back and forth.
I'm overweight (working on it) but dang, this seems excessive. Anybody else get this while on Arimidex? Otherwise, I'm free of side effects save a hot flash or two.
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Im sorry Kimby you are in the same boat as me, and others. Aching joints is very common. WIth me, it definitely helps to get moving, but some days are worse than others, and some days the aching "shifts around" in different places....feet.... thumbs..back...knees etc.
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Kimbythesea--I, too have arthritis in my knees, and while I was on arimidex I had several bouts of plantar fascitis, which gave me pain in the bottom of my feet. It was especially bad first thing in the morning. Heat and stretching helped, along with tylenol. What you describe doesn't sound so much like plantar fascitis, though. You might want to look into trying some arch supports in your shoes, or seeing a podiatrist or chiropracter to see if specialized orthotics would help.
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Wave Wisperer , the other day I noticed that my Sister in Law takes the Metformin ( she's pre-diabetic) and after reading about you being in a test run for it, for being beneficial for BC, I looked into it a little more.
When I cheched the NY metro area, for every hospital involved I noticed that my Oncologist is in charge of this study!
When I see her next month I am going to ask her about it, after all she has first hand info , since she is so involved in this test.
Mena
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I have plantar fasciitis. Pain in the right heel where the fascia is attached. But this is a return ailment. I had it about 10 yrs. ago long before bc, and the podiatrist said it tends to come back once you've had it. Can be very painful but mine isn't too bad yet. I'm doing the hamstring stretches, massaging with ice, using inserts in my shoes, and have temporarily stopped walking for exercise. When I think about it, I take ibuprofen with a meal. The pain can be in the arch or in the heel or both.
Pain isn't good!
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The bottom of my feet hurt all the time, often it's worse at night or when I elevate them after a long day. Alot of my foot pain is due to the peripheral neuropathy (my brother has PN and we have many of the same symptoms), but I also believe that it is exacerbated by the AI's, my PCP thinks that I many have some plantar fasciitis also.
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Kim...did you have chemo at all? If you did was it Taxol? Taxol can cause neuropathy in the feet and hands. I have it in my toes but I have no pain....just tingling. Some of the gals have real pain in their fingers, feet and toes. If this sounds similar, mention it to your MO. He told me it would go away but it's been almost a year now and no sign of it letting up. Just a suggestion
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My foot pain is from the taxotere - then I think that the AI's don't help. I'm 2+ years PFC and my neuropathy was minimal during treatment, but got progressively worse for about 9 months after, and has not gotten better. Right now I'm trying Effexor for that and the hot flashes, I think that it helps some, but I still have a fair amount of both. Others have gotten relief with gabapentin, nortryptiline, or amitryptiline. I tried the last two, they helped some, but hated the SE's, severe constipation and horrible dry mouth.
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Thanks ladies.
I think it will help as I get the lard off of me. It's like my feet and knees are saying "OK lady. Fifty seven years of this is enough. I'm retiring unless you knock off about 50 lbs."
It will help lessen the probability of recurrence, too, so Hello Weight Watchers.
I did not have chemo because of the rare combo of my having ILC and being HER2 +. They decided the benefits would not outweigh the risks based on the size of the tumor and a battery of tests they did later. Just 35 miserable rounds of radiation. I thought that would be easier than it was.
Lots of Advil, I guess, and arch supports
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Linda - your neuropathy got worse PFC for 9 months? That's the first I've heard of that kind of thing. My neuropathy started around the second infusion dose dense Taxol and reached it's zenith at the end of Taxol...I had a slight setback with Carboplatin and then got stuck from Aug 1 (last chemo) to October 31 - now it is finally improving. I do remember reading that Carboplatin could cause symptoms for up to 2 months following last infusion, but did not see that for any of the Taxanes.
I had severe shoulder tendonitis 6 years ago...when I was 3 years into peri-menopause. Given I'm getting very similar shoulder issues 3 months into Exemestane (menopause 2 years ago), I'm convinced what I had then was about my Estrogen dropping. The only way I got over it then was lots of PT and Celebrex. Sometimes I can lift my arms above my head, sometimes I can't....definitely linked to these anit-hormonols. (I also have a lot of joint stiffness in my fingers, hot flashes, etc.)
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Linda, Nortrip definitely helped me, and side effects only very slowly came on....that is, the ones you mentioned plus retention of fluid...so I'm trying to tough it out with nothing. I ditched amitrip years ago, for the same reason. FOr me, Amitrip worked better, but the SE were more prevalent. At the moment it's doable....just....
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In 2006 I was diagnodes with stage 3 grade 3 cancer, after surgery, chemo and rads -my onc told me he considered me cured.
However he wanted me to go on arimadex, wel lI tried it.
Pain in every joint - even the jaw . So confused that the family stopped me driving. I'd stopped at a green light and sat there crying because I could'nt remember what a green light ment.
Came of the med and with in 4 weeks was me again. Onc wanted me to try another AI - but said I would still be confused. As the bread winner that was a no no.
Went for my yearly poke and grope aches and pains dismissed as arthritis.
End of May ended up in Hospital because I kept falling - first week in June DX with stage 4 BC.
Do I regret not trying another AI - no, I've had six lovely years worded full time. e have some savings and the morgage is nearly payed off.
Remember quality is nearly always better than quality.
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Kam170 - the neuropathy could be because of the Taxotere, Carbo and AI's compounded? - I hate trying to figure out which treatment caused/causes what
Harvey - sorry to hear you are IV now. I understand what you mean about quality vs quantity - so far I'm ok with the SE's, but if they get much worse, I may have to quit the AI. I have some of the cognitive issues, but not to that extreme YIKES. I've been lucky to have Long Term Disability & Social Security Disability, so I don't have to worry about the money so much.
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Yesterday was my first day on Arimidex and when I woke up this morning I had spotting. Menopause was 9 years ago. Someone else reported spotting but I couldn't find her thread. Well, we'll see what today brings!
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New symptom - does anyone know what this is about? (Ok, I have seen this thing called "trigger finger," but not sure this is it.) Here it is...as usual, the joints in my fingers are stiff when I wake up from sleeping (no matter what time). I just start making fists, then extend my fingers, over and over again - seems to work out some of the stiffness (atleast in my mind). This time, when my fingers get to their fully extended position (or what I can get them to), my right ring finger snaps the last 20% of the way. It gets to 80% normal, then "snaps" into full position.
Any ideas appreciated. If this wasn't a Sunday, I'd been on the phone to the MO as I don't want to take one more pill if it's causing some sort of tendon damage now.
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yep that's trigger finger all right I had if for months in two fingers and my thumb and one day it just went away. I am still stiff in the mornings but I found if I run really hot water over my hands it seems to help.
Nancy
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Thanks Nancy - I suspected after reading more. Running hot water over fingers - that sounds like a great idea, thank you. I'm prone to inflammation (tendons) and my CRP is high. Has been high for years (not good). Was your MO alarmed? Did he/she suggest a different AI, if caused by an AI?
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Actually I never told him about the trigger fingers I just quit complaining to him about my hands and other aches and just trying to get 3 more years in , since I now have osteoporosis he said he would not have me to do more than the 5 years . I like my Onc but it seems like when I tell him about stuff he just kind of shrugs it off. Like when I went in October I told him about my neck (feels like a stiff neck for the last couple of months) and he said I just pulled a muscle. I think it is a SE from Arimidex. But what do I know I am not a doctor so I am just counting down the years .
Nancy
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Junif, yes I had spotting and I found it actually did state it as a side effect, but it wasn't on all the documentation for side effects. GOing from memory, *I think* it was about 2 weeks after I started A, I got spotting for about another 2 weeks, then it went away.
I find when I wake up in morning my fingers are sometimes quite stiff, and doing fists does alleviate it to a degree.
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Oh Nancy - you expresss how I feel with my MO. At this point she just wants me to try a different AI - like Tamoxifen...I balked, as I still have my uterus. Then she says, "so why didn't you get your uterus out?" Meh - she was there, before and after, my ooph, and never mentioned it. What can you do...they're busy and we are just one more patient.
As far as your neck..be careful. My shoulder tendonitis starts with my neck. When it happened 6 years ago, I was physically unable to to do anything for months. btw, Celebrex does help, but it has its own set of SEs.
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Nancy and Kam - that's where I am with my MO - he's kind of like - Oh that's too bad about the side effects, I think you'll feel better if you get more exercise - and you need to ask you PCP about all of these SE's, see you in a year :-)
And I have the hand stiffness, did have trigger finger for several months, but it just stopped one day, and for the last 3 months I've had a stiff neck, I believe it's all from the AI's!
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hello all - a while back some people mentioned metformin, even if you aren't diabetic. I just had my bloodwork done and came in at a 6 for blood sugar. Had i come in with 6.1 he would have considered me prediabetic. i know diabetics take metformin, but what does it have to do with bc? is there a thread? I'm suddenly interested!
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I am glad I am not the only one the thinks that a stiff neck is a SE, mine started out with just the left side going up into my head and sometimes it hurts on both sides, I really don't know what to do about it. First I thought I needed a new pillow got a new one and that didn't help, I told my DH maybe we need a new mattress, I don't know
Nancy
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Yep heres another one who had a stiff neck about a month ago (or so). I don't remember doing anything out of the ordinary, it just "arrived". It was extrememly painful and I could barely turn my head to the right. A heated wheatbag helped considerably. Completely gone now. Seeing what some of you are saying, I wouldn't hesitate to blame A now.
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I have a stiff neck on and off and never did before AI-so I'm thinking SE.
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Neck got so bad that I couldn't sleep for three days. Went to PCP. Sent to PT. The exerccises do help along with heat or ice as necessary. They have me turning head side to side, also turn head to side and look down holding for about thirty seconds. You could probably Google exercises for neck and shoulder and try some. Just remember what the PT told me that if an exercise hurts don't do it. You are trying to slowly get your neck and shoulders to a fuller range of motion. Good luck.
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yea well the strange thing is what exactly sets it off? Usually you can source it to something you might of done, even slightly done... but to just happen out of the blue for no reason at all...crazy.
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me to try a different AI - like Tamoxifen...I balked, as I still have my uterus. Then she says, "so why didn't you get your uterus out?" Meh - she was there, before and after, my ooph, and never mentioned it.
Kam
Tamoxifen is not an Al. No offense meant to YOU, but I do wonder about your DR! You might wnat to consider seeking other options on the alternative thread.
Good Luck to you!
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Hmmm..I know Tam isn't an AI...I'm sure my MO doesn't think so. I'll have to check my wording. Should have said "different hormonal." (I hope "hormonal" is correct...I know what I meant.) Just being somewhat sloppy. Maybe it's my new trigger finger.
My main problem with my MO (atleast the one I mentioned..it's not the only problem) is the question she asked me...."why didn't you get your uterus out?" I'm brca2+, so had an ooph. She knew I was going in for that surgery (15 days before I started exemestane, on 8/30) and she's just now asking me this question (because I'm having such difficulty with AIs and would like to try Tam).
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Here's hope for those of you who have developed plantar fasciitis. I had it BEFORE DX and all my treatments and am now on Arimidex. I was in physical therapy for it when my BC DX came in, so I abandoned the foot to concentrate on the boob. It took a year and a half, but the plantar fasciitis eventually went away, while I was on Arimidex.
(Of course, I now have all the other pains from Arimidex -- stiff fingers, aching hips, shoulders and knees!)
I've mentioned this before... I've been taking heavy doses of Prednisone for a lung infection, and, while on Prednisone, every one of my aches and pains went away. I feel 25 years younger. Now that I'm off it, I wonder how long it will be before the pains return. I know we can't take steroids long-term, but there has to be something the docs can give us to alleviate these stiff and painful joints...
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