For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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My MO did exactly what HikingLady's did, for the same reason. After about a year I tried Exemestane for a month just to see if my SEs changed but they really did not (might even have been a tad worse) so I went back to Anastrozole. Doing pretty well on it (despite having cut way back on my exercise during these weird times! :-( ).
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My MO's explanation in re: starting on Anastrozole was the same as HikingLady's MO. Teva is the manufacturer of my generic. I also concur with HikingLady's recommendation in re: hydration & exercise. Just hit 3 yrs on this medicine a few days ago.
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My MO said that anastrozole had been around the longest and was the least expensive and thus his first choice for an AI. I never had problems with it. I finished my 5 years last October.
HUGS!
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My best friend is a pharmacist. When I first started, I had terrible dizziness. I couldn't work or drive .. or walk! My friend recommended taking an over the counter med called antivert. It stopped the dizziness. I took it for about a month. I stopped taking it and the dizziness has not come back yet! It has been 7 months. My friend told me that the side effects are rough but they usually don't last. If you can find some ways to endure it (if it is too much, it is too much!) it will probably go away in a bit. I am hopeful for you. I have found that my side effects morph into different things. It is a rollercoaster for sure! I hope you get some relief!
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I am on the same therapy. I have monthly Lupron and daily arimidex. Arimidex has less side effects and studies are showing a slight benefit in preventing recurrence over other ones. I have been doing it since October.
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I started anastrozole May 2019. Tolerated it pretty well for the first few months. I was walking up to three miles a day. I did have hip and ankle pain but it was tolerable. By January of this year I had enough. I'm not sure if the colder weather had anything to do with it but it was hard to just get out of bed and walk down the hall. I talked to the onco and glucosamine was recommended and it did wonders. Pain subsided within just a few days. My hips still bother me but no where near what it was before. They also suggested acupuncture which I haven't tried but will definitely consider in the future. Fish oil was also suggested.
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I have used glucosamine/chondroitin/msm and fish oil for quite a number of years for overall joint health & swear by these. Acupuncture does also work for AI related "pains." Some also swear by Claritin (regular, NOT "D"). Another thing helpful is arnica cream or gel.
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Thanks, that is some encouragement. Awesome
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RE: joint pain
Everyone's different, of course. Glucosamine, chondroitin, Claritin, acupuncture...I have tried all of these for aches and pains, arthritis, etc. None of them ever made a difference for me.
For me, the thing that's helped the most for is to have built up some muscle mass. I have free weights and a weight bench, and I do uphill walking on my treadmill, wall sits, and some mat pilates. Once I got some muscle strength developed, my joints stopped complaining. When they do now, very occasionally, I take an NSAID, like Aleve or Ibuprofen, and I also have Meloxicam (Rx) which lasts 24 hours---very convenient. NSAIDS are okay for my gut, but that's not true for everyone.
Before Pandemic times, I did a daily workout in my nearby city pool, which was very friendly to my joints. I have a rebuilt (5 fusions) foot, so walking outside in my neighborhood on the sidewalk doesn't work for that fussy foot. So, now I use my weird little home gym setup in my basement. Not scenic, but my hour doing that workout is my best medicine for my aches and pains....
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I am starting lupron and anastrazole
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Hi Ladies -
I seem to be that one who posts and disappears! Keep trying to just move on and ignore everything, but sometimes it just won't let you. I really wish I could do a search within this thread, because I'll bet this has been discussed. 9 weeks into the change from Tamoxifen to Anastrozole, and I'm wondering about vasculitis? Had about 20 red spots of varying sizes appear on my lower legs yesterday, and now I have about 50 on each leg, and they have spread to my feet and thighs. With covid, we really haven't been traveling, and with AZ heat we haven't been outside much, so I'm not worried about bug bites. Never knew vasculitis was a side effect, but now that I stumbled on it, it seems to fit. So question... have any of you developed this since you started this med, and if so, is it serious? Does it get worse? Or is it just something to put up with? Do you take anything for it, or does it go away on its own? I have an appt with my MO tomorrow - just my 6-month - but I always kind of like to walk in already knowing what questions I should ask.
And TinyDancer, re: the neuropathy. I had it when I had been on Tamoxifen for a while, and what was amazing for me was combining magnesium supplements with high level B12. (there's a supplement called NeuRemedy that is the only version that finally brought my b12 level high enough to get rid of my symptoms and make my neurologist happy.) I had it every night for well over a year, and it comes back every time I get lazy with picking up my NeuRemedy, but if I'm consistent, I've been free of the pain and tingling for nearly 4 years. I know everyone will tell you something unique, but that is what worked for me.
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count it all joy- How are your platelets? Do the red spots blanch when you press them.
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keywest - thanks for responding. they're non-blanching. (I did the clear glass test.) and after 7 years of blood draws, your question just reminded me that I didn't remember to go for my labs before my appt today. Arghh! So when I do get them done this week... what would I look for?
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count-it-all-joy. Platelets are non-blanching. I have a low platelet count -ITP- and this is what yours sounds like- but, of course, may not be. I would get the platelet count from blood draw as soon as you possibly can and be on the lookout for any bleeding from anywhere. Actually, you could take a picture and message doctor. I don’t want to be alarming and maybe it’s just some kind of allergic rash, but don’t take a chance
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So, the MO agrees that it is vasculitis, and has taken me off of Anastrozole. Medication holiday while things clear up. He said I could choose between trying letrozole or exemestane next, and if they cause a similar issue, go back on Tamoxifen. (had 5 yrs on T and the side effects had settled down). Anyone have a better experience on either of the other AI's?
Also, for people who are getting benefits from glucosamine - any particular brand or form, or just pick from what's available?
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I just started taking glucosamine. I didn’t really look for anything name brand. Huge pills and directions said to take 3 a day. I got a pill cutter. I also read it can take 4-8 weeks to see real relief.
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KKukowski - I never thought of pill cutter! I am already taking other monster pills, and they don't go down as easily as they used to. Thank you.
keywest - for some reason your post came up after mine. can I ask if your vasculitis was brought on my your treatment/meds, or if it is unconnected? I have a few recurring conditions, and it's only now sinking in that this might be another one. I'm not able to use my right arm for draws/injections, or my left arm, and my left hand is getting more prone to blows. The idea of weak veins in my legs as a chronic condition is discouraging.
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Glucosamine - I take Natrol Vegetarian Glucosamine, Hyaluronic Acid & MSM. Info on bottle states: Triple action support for joint comfort. Shellfish-free Glucosamine helps maintain cartilage health. Hyaluronic Acid promotes lubrication & cushioning in the joints. MSM helps maintain the elasticity of joint tissue and supports joint strength. Dosage is 1 capsule 3x daily with a meal. Have used this for many years.
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Those huge glucosamine pills - they are large. I just google for powder and got several hits, this is one of them. Have never tried powder form. https://www.hrsupplements.com/glucosamine-hcl-powder/?sku=33655-125 There are quite a few more, I have no idea what it tastes like, the instructions describe mixing with water/suitable beverage. Also suggests taking between meals "take 1000 mg (~1/3 tsp) mixed with 8 - 16 ounces of water or suitable beverage. Taken 1 - 2 times daily, preferably between meals or as directed by a qualified health professional." The pill form I take says to take with 8 oz water do to its size, but does not mention with/without food or between meals.
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Hello Fellow Arimidex users. I wanted to pop in to let you know I stopped Arimidex after 5 years per my Oncologist. I tolerated it pretty well but did notice joint issues increased as did insomnia while taking it. With stopping it on March 1, I have had a definite decrease in joint issues (I have some preexisting problems unfortunately) and a definite improvement in my sleep. This thread helped me a lot so I did not want to forget to check in and let you know how things are post medication. Since I am one of those who tolerated the medication "pretty well" this info may be of some help to those who are similar.
I'll let you know when I have my updated DEXA scan as my osteopenia did worsen on this also but no retest til things settle down Covid 19- wise.
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I have been on Anastrozole for 3 months now (since my Oooh in January) and today I had a FaceTime visit with my MO to talk about the menopause side effects. Chills, finger and hand cramps, headaches, leg cramps, neuropathy and insomnia. He suggested that I try Black Cohosh and to continue with Anastrozole for another 3 months. Hopefully by then I can meet him in his office to tell him the Black Cohosh worked. Otherwise I will be switching back to Tamoxifen.
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Reader thank you so much for checking in. I love when the people out the other side do that! Gives the rest of us hope.
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My DH has bone Mets, the meds he’s on give him awful hot flash sweats. He’s taking black cohosh for it. Has really helped him, he even seems to be in a better mood!
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Funny. My MO wouldn't even HEAR of me thinking to take Black Cohosh. He thinks it is extremely estrogenic. Wish doctors would get on the same page!
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You’re right. Seems when DD was pregnant with #1, she was late, and was told to make the tea to start contractions. Crazy.
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ingerp, you're welcome! I felt a lot of help and encouragement on these boards particularly early on. I found taking Arimidex not easy but "do-able" as one of the helpers on this board would say. True.
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I just started taking Arimidex in January following the removal of my ovaries. Over the past month or so, I've developed carpal tunnel syndrome and lots of soreness in my joints. The carpal tunnel is keeping me up at night. The joint pain is making it hard to get up and down. I sent a note to my doctor today. I was on Tamoxifen for 4 years with no issues but this has been rough.
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I was wondering if anyone developed new side effects after several months on Arimidex. I have been having some tingling and feeling of numbness in my face, although it is not actually numb. I've been on Arimidex for 2 months I. Also have tingling in hands and feet since starting it. My MO states she does not think it is related to Arimidex because I didn't get symptoms as soon as I started Arimidex. Any ideas
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I was wondering if anyone developed new side effects after several months on Arimidex. I have been having some tingling and feeling of numbness in my face, although it is not actually numb. I've been on Arimidex for 2 months. I alsohave tingling in hands and feet since starting it. My MO states she does not think it is related to Arimidex because I didn't get symptoms as soon as I started Arimidex. Any ideas
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I have had tingling and numbness in my face, but I think it is related to my blood pressure. Long story, but when I was in the emergency room for chest pain and high blood pressure my whole left side went numb, including my face. Now that the blood pressure has been regulated, it doesn’t happen as often. As far as arms and legs go, the tingling (or neuropathy maybe?) has been happening off and on for the entire 5 years that I have been on Arimidex. And despite what your MO says, side effects can happen at any time on these drugs.0
