For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hooray! I am off of anastrozole for four weeks and then will try extremase (?) for four weeks to see if side effects will be less. Have had ankle, hip and back pain for weeks and of course, fatigue. I'm anxious to see what the difference might be when not on anastrozole. I haven't felt like my old self in close to two years. Looking forward to some normalcy possibly. Will see.
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I've just restarted Arimidex after a 4 week Oncologist endorsed break. I felt so good while off it. Within 3 days I could stand without crying out in pain. My second opinion Onc has suggested I try intermittent dosing in the hope of reaching the 5 year mark. (So another 15 months) Has anyone tried intermittent dosing and did it reduce the SE's? Thanks ladies.
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Welcome, Smurfette2664! We know how difficult the SE's can be, we're sorry that it's been so hard for you. We know other members have tried intermittent dosing, and we're sure some will chime in soon with their experience. Hopefully that is a good compromise that allows you to continue treatment but not have to deal with such difficult SE's!
The Mods
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smurfette, hopefully this will help. Have you asked your doctors for your percentage of benefit from the drugs. We are all different but I was horrified to find that in my case the benefit was very small and the side effects nasty. We all can make the best decisions, when we have all the information.
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Been on Arimidex now for only 8 days and already feeling the side effects. Pain in my shoulder, hands and knees are the worst. Neuropathy doesn't help either. Hard to sleep at night with shoulder, but trying to get out of bed in the morning is the pits! Trying to loosen up a bit by stretching and walking seems to help but the fatigue doesn't get me very far. Also nausea and loss of appetite again. And here I thought, of good, I'll be off the Herceptin and Perjeta by end of December, I have it made!! Only problem I've had through this whole ordeal is with the chemo so far. No problems whatsoever with either the surgery or the radiation.
The oncologist mentioned that it would take a few weeks for my body to adjust and I was prepared for that. However, reading all the posts here it seems it will be an ongoing problem. I see him next week for the first time since starting the drug, so will run it by him again.
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I felt better after 1 month and more comfortable yet at 3 months, Chris203
Doing quite fine now after 1 yea
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Chris203, I have learned from reading these posts and my own experiences everyone reacts differently. I did pretty well initially but by month four was have joint paid and depression. My OC put me on a 3 week vacation and I'm now back on going into month four and am feeling good. It does seem like the longer I'm on it the better it gets. I do exercise every day and drink lots of fluids.
Good luck
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Hey ..not sure if this was mentioned for bone pain using anastrozole, but I am on it for 4 years and I have used Claritin generic every night . I wasn't told this would help, but whenever I got the neulesta shot after chemo, my ONC told me to take Claritin for bone pain and he wasn't really sure why it worked, but it did. The times I skip Claritin, I would feel more pain in my back. It works for me so I thought I would share it. Anyone else use Claritin, either for neulesta shot or anastrozole?? Rosie
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Rosie - Come to think of it, my ONC also told me to take Claritin after the bone vaccine the day after each chemo treatment. I originally had chemo once every three weeks, but after two treatments they switched me to a regiment of once a week with a less powerful dose that I could tolerate better. I didn't need the bone vaccine with that regiment. I have my bone density exrays next week and will ask them but I guess it couldn't hurt to take it now.
I see you are just up 17 from me. We used to have property in Deerfield.
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Thanks Mactaz and Hikinglady. Guess I just went into a panic because I wasn't expecting to get symptoms right away. In fact wasn't expecting any kind of symptoms. Just thought, okay a pill once a day for 5 years, no big deal. I think if I were younger I wouldn't bother so much, but age 77 5 years is a chunk of what I have left. Just spoiled, I guess, as I've been healthy all my life. Sorry for the pity party. I've had such a positive outlook through this whole ordeal that this last thing kind of shook me.
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Bone density test, X-ray, doesn’t hurt, isn’t invasive in any way. Worst part is getting up off the table. The use of NONdrowsey Claritin has been brought up here many times. Some MOs know abut it, others give you a blank stare.
Im currently on Ibrance/letrozole. Using Claritin for joint pain. I’ve found it helps, and also with chemo tears, and chemo nose. Just like it’s supposed to do for allergies.0 -
Yes to generic Claritin. I've taken it since I started chemo.
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I took generic REGULAR Claritin foff and on for most of the 5 years I took anastrozole. Once I found out I could take BOTH Claritin AND Benedryl, I took the Claritin regularly (for 3-1/2 years). Claritin didn't help with the allergies for me, however. Now I don't take it since I'm done with my AI. But it definitely helps.
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I'm about 18 months into the 5 years. I tried generic Anastrozole and felt like I was 100 years old. By the second week everything ached. I started taking name brand Arimidex and the side effects are minimal (for me at least).
My hair also came back very curly. It has relaxed a bit as it has grown but still if very curly. I'm working with it. A little product, some scrunching and I'm good to go.
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I never heard of Claritin for pain. My shoulder has been KILLING me. Ibuprofen helps, but only if I take it several times a day. Very interesting.
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I’m only allowed Tylenol for pain because all others interfere with my Coumadin. So one of each daily knocks the pain down considerably
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Try CBD. If you are suffering with joint pain, hot flashes, mood swings, can’t sleep and feel like you are 100 years old at 50... game changer!
I tried it all!
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Chris203, no worries we all have those days and sometimes you just need to get it out.
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My insomnia and anxiety are annoying. I might try CBD. Any suggestions?
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jinx27, when are you taking your Arimidex? I have always had sleep issues and they compounded after starting my little pill. I take it first thing in the morning and then at night take 5 mg of melatonin. I don’t watch tv and try but do read my kindle in the dark. Within 30 minutes or less I’m asleep. I wake up during the night but usually get right back to sleep again. Anxiety I can’t help with, I call it the blues. My OC told me if my blues do come back, he would prefer I talk with a psychologist first before trying any meds. They would work with you to try an deal with your anxiety mentally versus medically.
Hope things get better
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I am taking anastrozole, for about 6 weeks now. My eyelids and above and below my eyes have become extremely swollen and my skin burned then peeling. It takes 5-6 days to go away. The eyes and skin itch. Has anyone experienced this and if so what was the solution?
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Pepsi1975 What does your MO or a dermatologist say? I wonder if it's possibly not related to taking an AI? I've never heard, on these posts, of an AI causing symptoms quite like what you're describing. Sounds very difficult, and I'm so sorry!
If you feel comfortable sharing Public settings for My Profile, for DX and TX, we can see where you are in treatment; sometimes that makes conversations a bit more tailored to issues that you are dealing with.
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Pepsi1975
Have you checked your blood pressure regularly? Arimidex can cause a slight increase in blood pressure and those symptoms could be related.
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Here's a question that I can't seem to find much information on here.
I have been on Anastrozole for the past year and doing fine. Just joint pain and not too bad. I keep active and that helps.
I have a history of GERD cause by a sliding hiatal hernia and gastroparesis, so after much investigation to figure out the root gastritis and scarring of my esophagus, an endoscope revealed my final diagnosis. All before BC was found. I was on Zantac 150 mg. twice a day and was able to get down to once a day before bedtime due to the GERD. Change of diet and keeping upright during sleep etc. Everything seemed great until the Zantac recall! Oh, my word! I just stopped taking it as soon as the recall was announced. I didn't notice a difference so thought I was fine without anything until last week! After two weeks off Zantac, I am miserable and wonder if that's my issue or "something else."
Does Anastrozole cause gastritis? I now have the same gnawing feeling epigastric stabbing pain and feeling of fullness all the time! It's horrible. I recently had an ultrasound for the abdomen as a follow up to a gallbladder polyp that seems to be small and stable. The ultrasound was for the abdomen and everything was normal other than watching the gallbladder polyp. BUT, my gastroenterologist closed his practice! No notice at all and he is off working at a teaching hospital and not taking patients. So... I'm stuck waiting three months to get into another one. Yes, pretty much all the gastroenterologists in my insurance network in my area are booked up at least three months. What a nightmare! I have an appointment with my PCP in four days to get a plan of what to do in the meantime, IF that's my problem. I am in a lot of pain and eating is all of a sudden a horrible mess. I am losing weight as well for the first time since chemotherapy two years ago! I went from feeling just fine one day to having these horrible ongoing gastric pains the next with no change in anything other than discontinuing Zantac. The FDA pulled it off the shelves so I can't take it. I tried Pepcid and that doesn't seem to help. My pain is epigastric and seems to be right under my ribcage in the center and feels like a pulling heavy feeling. I fill up quickly with small meals. Totally confusing.
Is the Anastrozole the root of the pain but has been masked by Zantac all this time OR do I have straight up gastritis for an unknown reason OR is this a recurrence of my BC? (Of course, I have that thought in the back of my head.) My last endoscope was four years ago, so I feel I would like to push for another one to check on things given my history of BC since then and of course, gastritis, gastroparesis, and oh, I have a narrowing and scarring of my esophagus from the GERD that is ongoing.
Does anyone else have stabbing epigastric pain all the time while being on Anastrozole?
I have nine more years to be on this drug and not sure if gastritis is related.
Thanks in advance if anyone can chime in on this.
Lilly
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LillyDuff I can't remember ever seeing what you're describing being mentioned on this thread, so maybe your gastritis is completely separate from your AI? Are there other acid reducers other than Zantac that you might be able to take? I'm so glad you'll see your PCP right away about this...sounds very awful, and losing weight is definitely something to mention to your PCP. Keep us posted.
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HikingLady:
That's the very question I plan on focusing on when I see the PCP. Too bad my gastroenterologist left before I could see him one more time. I was supposed to follow up with him after the ultrasound and I called to make that appointment and found out he left the practice. The group he was with is not in my insurance plan so I have to find a new doctor and of course, they are all booked! I'm just worried about recurrence besides the pain. This scares me and makes me so worried about possible BC spread elsewhere or a new primary.
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Pepsi - I have had the skin under my right eye burn and peel a few times now for no apparent reason. I never connected it to the AI. At first I thought it was just an allergic reaction to the eyeliner I had used (I rarely wear eye makeup) but it happened again and I had quit using eye makeup completely and also been sticking to just a couple moisturizers. I think for me it was just dry skin, and I also think my skin is just a lot more sensitive than it was before treatment. I put some pure unrefined shea butter on it for a few days and it eventually got better. I bought a couple different moisturizers that are more hydrating, which I use now. One is the desert rain creosote lotion from siphon draw apothecary for when I want to go the natural route (siphondraw.com) and the other is CeraVe moisturizing cream, which you can get at Target or CVS. Stuff that seemed like a good idea but didn't work for me was hyaluronic acid gel, or anything with fragrance or retinol. I don't know that I was experiencing the same thing you are though, yours sounds pretty severe. But the first thing I would do is think back over every bit of makeup or lotion or soap that you've used in the last few weeks and see if there's anything new. Or maybe just cut down on the number of products you're using to a few hypoallergenic things. This sounds like an allergic reaction to me.
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You might want to try gaviscon. Comes in tablets, or liquid. I had good luck with it when my hiatel hernia was giving me fits years ago.
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LillyDuff... "Too bad my gastroenterologist left before I could see him one more time."
I wish Doctors could take back control of the Medical Profession and their own practices. I have a Doctor I cannot see again until I switch out my Primary Care doc because he's not in the 'new group' my other Doc is in now. None of this makes much sense to me, but it does make me wonder if any of the docs care about keeping their patients as much as we care about keeping them.
There's help for your Gerd out there somewhere and I'm sure sooner or later you're going to find it!
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thisiknow:
Thank you. I hope you are right.:)
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