For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I guess I had better figure out where to find the threads on the side effects and things that can help with them. I've been on here for a few years and can never seem to find the answers.
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Tobyholicdeb, If you put in hair loss on anastrozole or something like that in search different post will pop up for you to read. Have you had your vitamin D level checked?
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Tobyholicdeb - be patient with searching. People post SEs and what has worked not worked on so many threads and in so many ways. "Remedies" for SEs work well for some, and not for others. I think biotin helps with me with weak nails, not sure if it does much for hair. Getting vitamin levels checked as flashlight suggested is a good idea for overall health. You might check what people do for hair loss on the chemotherapy blogs - even though it is a different drug causing the problem - some post on bringing hair back, keeping it healthy. Hair thinning for me seems to have reached a steady state, but my nair does not grow like it used to or feel as nice.
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count it all
Hello! Thanks for your feedback. The good news is that I have been on the Tamoxifen since July 17th.
My joint pain finally went away and I can walk without pain again! I do get hot flashes once I awhile but so far so good on this. It’s completely different then the last three that’s for sure!
Zek
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I hear you on the blood pressure medication. I used to be the most energetic person I knew. After I started that I couldn't be bothered to get out of my own way. I hate it too.
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Hi,
I started Anastrazole 2 weeks ago and I am already dealing with joint pain. OTC meds are not really helping. I am trying Glucosamine/Chondroitin and Curcumin supplements. I've heard that gluten free diet can help with symptoms.
Has anyone had any success with a gluten free diet?
Thanks!
Sparky
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Yes Sparky, eliminating gluten helped reduce my joint pain! I also take curcumin and have bi-weekly acupuncture treatments, these treatments also help with others side effects that I’ve experienced. When I started acupuncture treatments I went 2x weekly then 1x each week and now bi-weekly. Several others have shared that they take Claritin for relief of joint pain. I hope this helps.
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sparky - brand name Arimidex seems to have fewer and less intense SE than generic anastrozole, at least it did for me. Less meat seems to help as well. Turmeric also helps. Use powder with pepper in meals as well as supplements. Dietary seems better than supplements. Acupuncture also helps, recently trying electro-stim with acupuncture. No experience with gluten free. Brand name Arimidex $2/day if i buy; $10/day through insurance; generic, pennies/day
brand name Arimidex https://www.eaglepharmacy.com/drug/arimidex
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I had joint pain, stiffness, fatigue, and it was all difficult the first few weeks after starting my AI. After maybe 2 months, I felt pretty normal. This is exactly what my MO predicted would be the case, based on his years in practice and many patients' reports to him. I am sharing this, because it all did get better, and when I started on Anastrozole, I was grateful that people chimed in on this thread with cheering and positive reports. Everyone's different, and often, we feel better after a few weeks on the AI.
I continue to have sticky joints--they do get a little stiff, and I have some occasional joint aches, but I did already have arthritis---I don't think it's tons worse on my AI. My thumbs occasionally lock up. I am stiff when I sit too long. All of this is mildly irritating, but not horrible. I feel much better when I get 1 hour of exercise and drink a lot of water every day.
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I just had some lab work done and my cholesterol has gone up since starting anastrozole. Not surprising, since that is a common side effect, but upsetting nonetheless. Who has had success getting their level down without statins, and how did you do it? Beyond the obvious eating less cholesterol, that is.
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Sparky13-I had to switch from tamoxifen to Arimidex when I had a wonky Pap result. On Tamoxifen, I didn't really have side effects other than hot flashes that were so bad all day, I would almost have anxiety attacks when I felt one starting.
On Arimidex, the flashes were much more manageable but I had a lot of joint pain. My PCP put me on Cymbalta, off label, saying there were lots of studies of how it helped with joint pain. Oncologist agreed. It was a game changer. I also switched over to the actual brand Arimidex, not a generic. It is more expensive, even with the assistance program they have, but I feel like it made a huge difference. I pay $180 for 3 months. I will go on medicare in December and I think then I won't be eligible for the program, but I also think I can go off Arimidex then if I want too. I am mainly taking it now just because she lets me take premarin for relief from the down there issues, as long as I stay on ARimidex
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FluffQueen01, I'm rather surprised that your MO is prescribing Premarin since you are apparently ER+ (as you are taking Arimidex). I have never heard of that being done, not that I'm an expert. Many studies have indicated that HRT can contribute to breast cancer. What has your MO said its use? Or did your PCP prescribe the Premarin? To me, again I'm no doctor, it would seem that Premarin would cancel out the benefits of Arimidex.
I've had friends who have used Cymbalta like you are and had very good results. Glad it has helped you.
HUGS!
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Sparky: I have been in anastrazole since April 2020. Got joint pain pretty quickly. Especially in my shoulders. I was having difficulty getting to sleep or staying asleep. I started glucosamine and after 3 months of no change I stopped it and am now trying magnesium. In an earlier thread, someone shared a link to magnesium options.
I also take gabapentin and melatonin at night. The past 5 nights I have slept better. Not sure if it's because of the magnesium or the symptoms just get better after a few months, as others have said. I am just so grateful when I can get good sleep.
I have heard about turmeric but my Onc says that is not ok for me due to history of clots. My next option would have been CBD oil and acupuncture. I still may try acupuncture but am a little nervous about that.
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I've had side effects but not too bad with Teva brand of the generic. I had read on this forum theTeva brand (outside of the brand name Arimedex) seems to have fewest side effects for a generic. Also I am taking turmeric, boswellia, omega-3 and magnesium which I have felt all have favorably impacted my side effects--my MO said the first 3 have been shown to help with the joint pain from the anastrozole. Kkukowski--maybe the boswellia or omega-3 would be an option for you to at least ask about??. . not sure about them with the blood clots. Also exercising--even just walking--daily helps me a lot with the joint pain/issues. I really notice a difference with no exercise.
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fluffqueen - You can probably stay on brand name Arimidex if you purchase directly from a pharmacy in Florida. I pay $2/day and do not go through insurance. Insurance would have charged 8-10/day. I am not in any program that I know of. Not 65, yet. I sure hope I do not get cut off. My DR sent RX request to them, they bill automatically to my credit card. https://www.eaglepharmacy.com/drug/arimidex
WhatJustHappened - I do not know if it is the cancer, cancer drugs, getting older, but my LDL is a little high and HDL a little low. Arimidex probably makes it worse. To me seems odd given my diet and activity level. This started happening before any cancer Dx, so maybe age or genetics? Maybe I get more plant based fat (olive, flax) than is good for me. Very little animal, but maybe I should cut down on dairy. I hike/walk daily. Sometimes swim. Maybe it is time to hit the treadmill again. I will put it on the list of questions for the primary and ND. Primary did suggest exercise to increase the HDL, but I am not sedentary. Also looking into intermittant fasting ( 5 normal, 2 restricted).
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Zeke - glad to hear it! such a trial and error to see how we respond, and I'm happy your body is doing well with Tamoxifen.
What are you looking forward to doing now that the joint pain is going away??My MO took me off anstrozole, and just started exemestane last week. We'll see how this goes...
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I'm on the edge and ready to lose it. I took Aromosin for 6 weeks. Was in horrible pain from head to toe, with a bad headache, and everything felt swollen. Started immediately after taking pill, and stops within 24 hours of taking pill. I switched to Arimidex last week, every other day. Same symptoms right away, a tiny bit better. Less headache, more fatigue. Sounds like an allergy to me. I took an Allegra on Saturday and a Clariton yesterday and felt like the inflammation went away within 1 hour and I felt better. But antihistimines make me dizzy and give me bad insomnia, I haven't slept in two days. Getting my ovaries out 8/25. I'm hoping the Lupron is contributing to my misery and it will help when it is out of my system. I read on one of the forums that people do take Clariton for the bone pain. Any thoughts? Are these side effects or an allergy? Why do some people have no side effects and others horrible side effects? I don't think the Cymbalta will work, I also react very badly to SSRIs.
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Regular Claritin (not "D") doesn't make me sleepy. I took it with Benedryl while I was on Anastrozole. Benedryl also doesn't make me sleepy. Claritin helps more with stiffness for me. And it does help. Give it a try. Hopefully no SEs from it for you. Benedryl is the only thing that works on my allergies. Claritin absolutely does not.
Also consider that you could be extremely stressed out. And very understandable. You've had a terrible year and facing more surgery. Try to take a deep breath. And a glass of wine or two? Just cut yourself some slack. With luck things will settle down soon. Good luck with your surgery!
HUGS!
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Thanks PontiacPeggy, I usually hate Benedryl, but trying it tonight because the clariton and allegra gave me insomnia. I've been stressed my whole life. But the pain is real. I felt pretty good through radiation and even chemo wasn't that bad, but these pills and possibly with the lupron are killing me. I can' t live like this. I'm looking forward to the surgery to stop of the lupron. But going back to work has also increased my stress and impacted my sleep. Funny thing about the wine. I had some on Saturday, it made me congested, I took the Allegra and felt great, so don't know if it was the combination that worked, lol!!
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JRNJ, obviously your magic potion is wine and Allegra!! Hope that Benedryl works for you. I can well imagine that going back to work is stressful. Everything about surviving this pandemic is stressful, let alone all that you've been going through. Hope you sail through your surgery!
HUGS!
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ThanksPontiacPeggy!!! I just need to get this medicine under control. I suppose I could take Tamoxifen, but I read it may not be as effective for ILC.
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JRNJ, Tamoxifen is an option. Good luck with whatever you decide to do.
HUGS!
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JRNJ - talk to your DR about the SEs from anastrozole or maybe other drugs, Brand name Arimidex helped me with fewer and less intense SEs than generic, but it sounds like it did not help you. Tamoxifen might be an alternative. I was taking Tamoxifen after having joint issues with generic anastrole. With the 3rd BC diagnosis, the oncologist put me back on Arimidex as well as Ibrance. No metastasis detected, but I am worried. Also be careful of what you use for sleep and pain, especially if combined with alcohol.. While CBD, CBD-THC did not provide relief for me, some people report very good results.
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Thank everyone for the reply to my post. I really want to stick with the AI instead of going to Tamaxofin. I will talk to my MO about switching to Arimidex and I will try a gluten free diet. I've also heard that tart cherry juice helps with joint pain.
Has anyone else experience neuropathy? I have never had any leg pain until I started this drug.
Sparky
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I have been taking Anastrozole for about 3 yrs and SE seem to be getting worse. Extreme fatigue, hot flashes, irritability, sleeplessness, and joint pain I asked my Oncologist about switching to Letrozole which my sister takes without many of the SE I have. She said Letrozole has about the same SE as Anastrole and is prescribing Aromasin. I have never heard of this. Is anyone else taking it and are the SE any less. I am worried about cost as it does not appear that my insurance covers it.
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I tried to switch to generic Aromasin (exemestane) after 1 year because I was having so many side effects on anastrozole. I lasted 3 months, I actually think it was worse, and switched back to anastrozole. Coming up to 3 year mark, and the last 6 months have been terrible. Will discuss whats next at appt in September. My insurance covered it the same as anastrozole.
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I call Arimidex from Eagle pharmacy my magic pill. I knew from day one I wanted brand name despite the cost.
All SEs have been subsided. I take 1/2 Claritin every other day at night no supplements AI w low dose celexa in the morning. Other than 6 mile walk every other day w 1 1/2 pound weight each hand. Still counting my blessing every day.
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JRNJ...I have been on anastrozole 5 years...from the very start I took a Claritin at night and had minimal bone pain...My MO had suggested Claritin after I would have my neulesta shot day after chemo for bone pain from the shot...so, since anastrozole usually had bone pain as a side effect, I took Claritin...I could tell a difference whenever I would forget to take it...so, for me, I say the Claritin helped. Rosie
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Hey Hiking Lady! I was interested in your post as you said 1 hour of exercise helps your pain/stiffness. I had my 6 year MO appt. And we discussed me coming off anastrozole. Like you, my bone pain was not horrible but I took a Claritin every night, so that helped me.
I am now on a 3 month "vacation" from anastrozole as new trials show that 5 years may be enough protection vs the SE of the drug for osteoporosis. I am already at osteopinia, taking fosomax.
I had to stop my Barre exercise which I loved, due to knee issues. I also felt much better doing my Barre! Knee is better and I may start again, and modify moves.
I wonder if being off anastrozole will improve my joint issues? But, being 60, having slight arthritis in areas, also plays a role in the stiffness.
Exercise is the key, I believe, to helping with our stiffness!!! Hang in there everyone and stay safe! Rosie
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Hey Pontiac Peg! I remember a while back you said you are off anastrozole and MO said 5 years of anastrozole was ok. (Or something like that😁)
I had my 6 year MO visit and my new, younger doctor was very research based, giving me new study info. Saying the same thing and that at 5 years of being on anastrozole, they have the discussion about either staying on it or stopping.
I have taken a "vacation" from the meds for a few months and will revisit in November. Only been off of it a few days.
So, I retired in January, getting off my meds (possibly) and exercising more!! Just hoping things continue to go well, despite our pandemic 💪🏻🙏🏼❤️! Stay well and safe and thanks for always having positive input for us all!! Rosie
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