Arimidex - Coping with the SE's
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I saw Onc yesterday. I loved the way he said sinus isn't usually a side-effect of Arimidex but just because things aren't listed doesn't mean they can't happen because of it. He stressed to me it was about if I can cope with the changes in my body regardless of what they are. And if I can't then we will look at other options. What a great Onc he is.
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kyliet - what a great Onc!! Love him!!
What understanding advice!
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Twenty months post diagnosis, and I'm finally needing the support of my breast cancer survivor sisterhood. I'm 10 months into arimidex, and the joint pain and swelling is so bad. I am NOT thinking of stopping the drug, but am really tired of the constant pain. It's really bad in my hips/knees and hands. I know moving would help so much, but I also have neuropathy in both feet from Paclitaxel. Ugh, I hate to whine. I'm just in pain. Thanks for listening.
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Welcome, and don't worry about whining here. Have you tried loratizine? It's Claritin, an antihistamine. It helps some people. Don't get the decongestant, just the plain Claritin. You might also talk to your doc about switching to a different AI. Some people have fewer symptoms when they switch. For sure, complain about that pain. There may be something that helps.
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Lettagiz~ getting up and moving does help with the pain (I know it is hard to do) Lots of water!!
and about the neuropathy, I had this too and had accupunture and it went away. Accupunture also helped with the pain in my feet. I hope this helps you. Lots of good ideas on this site.
Enjoy your day
Balsie
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Lettagiz, I'm right there with you. About one year into Arimidex and the joint pain is getting worse. For me, it's fingers, hips and shoulder. The Claritin worked for me while getting Neulasta shots but hasn't seemed to help with this. I also don't want to stop, but I'm going to make an appt with my MO to talk about the pain.
Good luck to you.
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Thank you all for the information. I'm going to try vinegar. If I can just get the pain under control, I think I'll be able to get moving.
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Do you think A could be the cause of my toe cramps. Very inconvenient when I have to get out of the car to straighten my toes.
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Yes I do Wren especially if its only happened since A.
Excercise does help. Im not exactly a fitness freak but it has definitely helped. I increased my walk to more consistently do about 2 miles a day. For me that appears to have made a big difference than when I was doing about 2/3rds that distance. Im about 15mths out. Because of peripheral neuropathy I go walking early in the morning and it's doable. Leave it to later and NAH! No way.
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I just wanted to thank all of my "Arimidex Sisters" for the help while I have been on it the last two years. After the problems I had on Tamoxifen (blood clot, gyno problems that required an oopherectomy), I was put on Arimidex. I have experienced many side effects just as many of you have/are but the joint pain has been so bad ever since two months after starting the drug that today at my MO decided to switch me to Aromasin. I sure hope I react better to this drug. Anyway, I hope everyone on here does well with Arimidex and I hope that everyone that has applied for the Vanderbilt Arimidex joint pain trial gets accepted.
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Cowgal, hopefully you will post back and let us know how you go on Aromasin. I hope you do better on that. I did Tamox for 2 years and I was concerned abut clots as well, plus it does have some side effects involving the "downstairs" dept. ...one of them being a thickening of the uterus.
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Wren-absolutely. My fingers lock all the time, so I imagine toes could cramp, as well. I'm taking a bold step, next week I'm going to stop taking my arimidex for awhile just to see if any of my aches and pains subside, then start up again.
Hang in there everybody.
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Wren, I wake up sometimes with ankle cramps, of all things! Again, just since taking "A."
Spunky, let us know how your body reacts when you stop taking your meds. I have an appt with my MO to talk about my extreme joint pain and stiffness, which seems to get worse instead of better over time.
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WaveWhisperer--when you talk with your doc ask about your Vit D3 and magnesium levels. Either of these being off can cause bone and joint aching, pain and stiffness. For me, if I kept my Vit D3 above 50 and my magnesium in the middle of the normal range I felt less stiff and achey.
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Nativemaine, I aM glad hou said that. I have joint pain, but US hard telling what its from, as i was supposed to get my knees done brgire all thus happened. But I am 9 mo PFC and still low on magnesium, to the point of needing iv supplements on top of pills. My vitamen D is at 34, which is barely acceptable. I will keep on working on getting both of these raised. My onc says it is an SE that is hanging on. LOL Whee, more fun!
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NativeMaine, my MO earlier suspected low Vitamin D and had my blood tested but I ended up in the high normal range (maybe because I spend half the year in the Bahamas). I'll have to ask about my magnesium levels. (The downside of living in the sun is that I'm heavily scarred from Mohs surgeries to remove skin cancers. I had another biopsy last week.) If it isn't one thing, it's another, right?
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Seems like we can't ever get ahead!
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Does or has anyone had pain under the arms and down the arms? Just had 6 month follow up with surgeon and he could find no reason. Thank you!
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Ask on one of the lymphadema threads. There's both arm and truncal lymphedema.
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Cycadmania - like Wrenn44 said, come join us on the lymphedema thread. The first thing I noticed with lymphedema was the pain in my arm and that all my shirt sleeves were suddenly tighter on the mastectomy side. I don't want to jump the gun here but if your arm is swollen and hot to the touch, you need to get it taken care of immediately.
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Dr. checked it out today...no heat no swelling! Thank you !
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Phew! That's good news.
FYI, heat in the affected limb would mean that you had an infection and that is a bad combo with lymphedema and they would have to get you started on antibiotics.0 -
Don't want that! Dr thought it is probably a SE from the arimidex
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Sleep! I really don't know what that is any more. I had problems to begin with and now it is hit or miss on sleep. My PCP doesn't want me to take Ambien every day (sometimes it doesn't work) so I go back and forth between Ambien and a muscle relaxer and melatonin. Last night I got maybe 4 hours sleep. I now think my mental state is getting worse because I don't know if I am going to sleep or not. I do work outside the home and I am a bookkeeper. Not good. I just saw my oncologist and they really didn't give me any suggestions except to say that they are really cracking down on people taking Ambien.
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Claudia don't know what to say except BIG GENTLE HUGS... been there and still doing that. With other stresses to deal with as well as BC it's not easy.
Im not sure what Ambien is or if its available here but Ive sworn by sleep meds in the past but only used as a back-up or when I KNOW Im not going to get any sleep because of certain triggers. Now Ive been on them for well over a month and I DONT LIKE THAT, but under the circumstances is that or no sleep. I can understand why the Docs say they are cracking down, coz its my understanding every sleep med is addictive. The one Im on is supposed to be the least. When I go off them I will split them up and ramp it down being aware withdrawal can cause depression. We need that like we need a kick up the butt.
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Just wanted to say hello since I'm right down the road from you in Ventura, and I too, had a lumpectomy and radiation, no chemo.
Although my case had to go before a tumor board to make a recommendation on To Chemo or Not to Chemo as I was Her2Neu positive.
I'm doing well with the Arimidex. No numb toes, but interesting to hear. I wonder if it's related?
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Hi All,
Am new to this site, didn't want to think I'm just lurking. Started Anastrozole (generic Arimidex) end of last year/beginning of this year. Some SE's, need to get caught up on this forum.
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Can't sleep at night, can't stay alert all day. Grrrr
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Kyliet.... Have that too, been blaming it on recon/TE's that I can't sleep (maybe 5 hours at most) and then exhausted all day. For me, it's also achy bones and joints on cloudy and rainy days; sharp pains in my arm pit when i walk down refrigerated/freezer aisles in grocery store. Also, now I just LOOK at food and gain weight. Sucks!
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Claudia, you have to talk to one of your doctors -- PCP or MO -- about something to help you sleep. Lack of sleep does the body -- and mind -- real harm. There are many options other than Ambien and its ilk. I haven't sleep well since BC, and my doctors have worked with me to try a number of things. I tried Neurotin (gabapentin), which worked like a charm for a while. (Although a drug for neuropathy, it has the pleasant side effect of calming your mind enough so you can sleep). Then I tried Rozerem, which is like melatonin on steroids. That worked for a while, too. Fnally my PCP prescribed Clonipin (clozapem, I think). I take one OTC melatonin (5 mg) and 1 Clonipin, and there haasn't been one night when I haven't fallen asleep in 30 minutes. Even when I wake up to go to the bathroom, I'm able to get back to sleep. And I'm not groggy in the AM.
Not saying that's the panacea for you, but insist that your doctors work with you until they find something that works. I know what I feel like after even one sleepless night, and science has shown that insomnia affects your motor skills, your judgment and your immune system.
Don't give up. I don't like taking more pills, but my PCP said sleep is so important that it ouweighs the negatives of taking more pills.
Good luck!
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