For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Did anyone get red bumps on skin -legs and a few on arms- from meds? They are not itchy. Went to dermatologist. She said it looks like a rash and asked about my meds.
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So far no swelling or rash....sore and super tired but we had one of the grandsons overnight and the we went cave exploring and hiking in park...I think it is med related, just life related
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kawigirl126 thanknyou for that. I'm off ai for a month because i felt dreadful. I'm two weeks into that and the nightsweats are lessening. I just couldn't cope with them. I was also feeling very depressed and that has gone too. I had a bit of a sore right knee which i hurt a year or so ago but immediately after starting meds both knees got very sore. I'm fine just
walking about but i can't take any weight on them bent without excruciating pain. If i have to get anything from low down i have to push myself back up with my hands. The bs said that is nothing to do with the meds but i feel it istoo much of a ccoincidence. Did anyone else have that?
Regards to everyone struggling with this.
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Thank you, Smurfette26. I will ask my MO about switching brands!! Great suggestion.
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Pennysgal- Sorry you are having swelling- me, too. Was on Arimidex but the painful joints and hot flashes were really a bummer so after 3 months- MO suggested exemestane. Have been on it about 5 weeks but at abt week 3 or so, ankles and legs started swelling. Some days are worse than others. I saw PS and PCP and neither of them thought it was a big deal. PS said that summer would bring that on. Hmmm...will look up SE's and see what you are referring to and see if it sounds like what I've got going on. Ugh. Whatg are you thinking about doing?
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HappyHammer - they told me to stop for a week and see if it helps. I had joint pain on arimidex, but not the swelling. I feel like I can deal with the pain more easily. The swelling is to the point where I can't make a fist, my ring is very tight, and it hurts to walk. I'm assuming they will try Femara next.
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Folks, I've been taking Arimidex in the morning about 4 months with no initial side effects except the return of mild hot flashes. However, in most recent 6 weeks I've been experiencing this debilitating afternoon syndrome of body aches, general weakness, & malaise that is different from my profile of fibromyalgia symptoms of 20-years duration. My MO prescribed Arimidex following my 2nd round of BC & bilateral mastectomy Dec 2015 (DCIS in same breast afflicted with IDC 10 years ago). Went through 5 years of tamoxifen back then & tolerated it okay. Does anyone think Arimidex can be okay for a while & then start causing pain & weakness like this? Fibro meds don't touch it---even the opiates. I have a BMI of 22, exercise 3-5 days/week, am 56 years old, eat pretty well. Help!
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well i have been on the femmara now for about 3 months and the hot flashes are pretty darn strong daily. Chin hairs growing again, and numbness in toes back. Other than that, not much, but thinking if the estrogen is flaring on this A1, dont know if its working? Any thought gals
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I'm having surgery in early August. Did anyone go off of Arimidex before, during, or after surgery? I was planning a little break for myself. My MO said that it was ok to be on it during surgery and I haven't heard from my plastic surgeon. I'm having fat transfer to the radiated breast and a lift to the other breast. Radiation did a lot of damage to my right breast and underlying muscle. My skin held up well through treatment, but inside my breast has been getting thicker andtightening up ever since.
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Harleymom, welcome to BCO. Sorry about your recurrence. Your description of SE's on arimidex are exactly what eventually led me to ask my MO for a change in medication. Ask your MO if you can take a break to see if it resolves.
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suzQ what do you mean? Thickening and tightening. I have a seroma which is creating a mini boob, but closer to my armpit. Had it drained 5 times, but wont go away. Will see surgeon next month. ....??.? On surgery
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Taking a break from anastrozole (AI). I have tingling in my toes and some zingers in my feet occasionally. Anyone get this??? I saw a few others had this, but I've been on AIs for 3 months. When did tingling start with you?
I also have red bumps on my legs, and I might be imagining tingling on my lips after I took the AI last night. I took a benadryl and felt better. MO said to stop meds and if things start getting better, it's the meds. After I read side effects, I started imagining I had everything! Don't put an idea in my head! Lol. Did anyone get red bumps on legs and ankles?
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Sloan...YES! After a month or so on Arimidex, I starting noticing a "rash"...started on feet and progressed to legs...MO nor his staff saw this as a SE of the Arimidex and referred to dermatologist of it continues. Really? Never had it before...have it now and getting worse as time goes on with Arimidex. Now, off Arimidex and ion Exestereme (cannot spell that)...and, no rash...none. Me thinks it was the Arimidex.
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HH - Thank you! I hope that's what mine is. When you look up causes of rashes on the Internet it kind of freaks you out!
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Right, Sloan, especially when the MO and staff look as though they have never seen it...and, then, it disappears after noit being on that particular med???
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kind of like "not rads", isn't it?
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Maybe from one of the fillers? For those lactose intolerant most do contain lactose as a binder/filler
Edited to add Daily Med site
https://dailymed.nlm.nih.gov/dailymed/
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Molly and HH- Haha. Right!
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Sloan, docs never think "their" meds cause issues. I have a bit of hair loss (which I had before BC) and asked my BS about it. Oh it's not the Arimidex, it's probably a thyroid problem, get a blood test. So went to my PCP and she said no, it's the Arimidex. Thyroid test came back fine. Oh well. I think my problem is partly genes and partly Arimidex.
HUGS!
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Only been on Anastrozole for a little over 3 weeks, and the only SE's I've noticed are the increased hot flashes - and they are flashes. They do not last nearly as long as previous hot flashes I've had. I've also had some stiffness in my fingers in the morning. Since I have arthritis in almost every joint, I take an NSAID for that, and the finger stiffness clears up as well.
Some of my hot flashes will cue me they're coming by a tingling in the soles of my feet. This happened before the Anastrozole, so I can't blame it. Anybody else have the foot predictor?
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Jersygirl,
Radiation causes fibrosis. It makes the tissue shrink. It gets tight and thick. A seroma can cause scar tissue to form. Its kinda the same. The body is reacting to an injury and produces fibroblasts. In a radiated breast it doesn't know when to stop!
My PS wants me off Anastrozole for a week before surgery and a week after. I got a script for Trental from my RO to take 3x a day with vitamin E. Its been two weeks and I'm really noticing a difference in my muscle area of the radiation field. Its much less tight and sore
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Peggy,
I went for a check up with my PCP. He told me to ask my MO about the problems I was having on the Anastrozole. My MO said the problems I was having weren't caused by the Anastrozole. Now it's back to my PCP! Very frustrating that no one wants to help
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Suz-Q, my MO told me to come off of my Anastrozole 2 weeks either side of my surgery. My pharmacist also mentioned that to me as did my BS. It was a nice break. Most of my SEs went away. Now that I'm back on it, the SEs are starting to come back. :-(
Before my surgery, I had been taking my pill in the evening with dinner. I had been having trouble sleeping, both going to sleep and staying asleep. I read here about someone who was having the same problems and started taking her pill in the a.m. I tried that and have not had the sleeping issues lately.
My most bothersome SE is neck muscle spams. They come on randomly and leave me with a headache. I had found that Deep Blue Essential Oil massaged into my neck twice a day pretty much stopped them. After the surgery, when I went back on the AI, the spasms started again. This time, my son bought me some cannabis-infused salve. Strongly encouraged me to try it. It's a bit less expensive than the oil and, according to him, has medical trials to back it up. Have any of you tried anything like that? Granted, I live in WA State, so it's legal here. To humor him, I'm giving it a try. It doesn't seem to be as effective. But I don't know if I'm using enough or giving it enough time to work. There are no instructions beyond, "Apply to the skin as needed."
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Kawigirl, I wouldn't have thought of a cannabis salve. I'll be interested in hearing what you make of it!
HUGS!
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Kawgirl, Thanks for the information. I may go off Anastrozole a little earlier and back on a little later! I hope that when I go back on I won't have to go through the adjustment period again. With each medication I add it takes me a minimum of two weeks or longer for my body to adjust.
Good news for me, I haven't felt fatigued all week! I was a bit frustrated after my last visit to my MO on June 3 so I called her nurse for a little chat about the symptoms I was having that my doc blew off. I asked her about the fatigue I had been experiencing and she said that happens as your body adjusts to the Anastrozole. Symptoms can come and go and this usually peaks at about 6 months. Lesson: Keep asking until someone gives you an answer that seems reasonable. I also contacted my PCP about keeping a close eye on my thyroid levels. A symptom of hypothyroidism is fatigue and it runs in my family. The levels are still in the normal range, but slowly moving toward hypothyroidism. TSH is going up and T4 is dropping.
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Kawgirl, I'm curious, what made you decide to go with a mastectomy? We have a very similar diagnosis. I felt a strong push from all medical personnel to have breast conserving surgery and radiation. I was pertrified of doing rads because of the SE's. The medical society really blows off the SE's of radiation, and say you can keep your breast, but what they don't tell you is how damaged it wil be afterwards, and how the damage keeps accumulating for years and years. Not just the damage to the breast but underlying structures like your muscles and lungs. There was No good choice for me.
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I agree, warnings of radiation short and long term not emphasised strongly enough. You are so vulnerable enough as it is. I had what they call partial mastectomy. At least 1/3 of breast removed -I am glad to keep breast but radiation created pulmonary problems 3 months after. It may be a coincidence but now have neck problems - my last 4-5 days of rads were super doses and my body placed in a side position - not comfortable esp last day. Your body is supposed to line up perfectly according to markings before machine can even start - I till wonder.0
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I told my surgeon that I absolutely did not want radiation. I went with the mastectomy so it was not needed.
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I use cannabis infused creams that I get from a medical Marijuana pharmacy....and I love it. It works great topically for my pain issues.
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hi all!
Did anyone ever have a thigh have a lot of nerve pain and then go numb? Mine felt lime it wasburning one day and its been kind of numb ever since. Just weird. I'll let my onc know when i see him in a couple of months. BTW, no rash, like shingles. Just thought id ask.
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