For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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michelept----have you tried Tamoxifen? I t is supposed to be safer for bones---not sure about joints. You probably saw my post abouit what my MO and I are doing with taking less than daily pill...I do feel tons better....
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yup...and I felt MUCH better on it....but my Onc said because my BC was so aggressive, I need Arimidex for life. UGH. Seriously, my joints are on fire.......
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Would he let you try what I am doing? My oncologist says he has about 2000 women with breast cancer and he has about 2 dozen that are struggling like I am and that quality of life has to play into this so that we can continue to engage in life. He actually had a woman hobble in on a walker for her routine check up thinking she should just suck it up until she had her next appointment. He told me to never ever do that, to always let him know..
Your bruising is scary----does your Onco know about that----
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When I started, my MO said to take 1200 mg calcium and 5000 vit D3 daily. I do. If I miss a few days of either, my feet feel like they will shatter like glass. Make sure it's D3.
Most people are low in D3 anyway. I'm in Fl with all the sun, I was at 17. Now it's up to 50 and I feel better.
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Sppokie that is good advice---mine (Vit d3) was low too----there is a connection between Vitimin D and breast cancer prevention and survivorship. I take 5000 M-F and the Endocrinologist bumped me to 10,000 on Sat & Sunday. She like you wants to see the number well up there. The Calcium helps also---and I sleep better when I am getting my supplements regularly ( I am bad about forgetting them---Just started dumping them into my new Pill case and I can tell I feel better already)
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The reason I started the D3, I also have fibro. I'd heard it could help with that pain. My pain doc started me on it waaay before bc. The MO added the calcium 4 years ago. The combo has helped both.
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Research turmeric for joint pain. It gets lots of good reviews. I take the Gaia turmeric which already has the black pepper in it that you need to make it work. And it's made locally in NC. It took me from a pain level of 8-9/10 down to a 1-2/10. And my MO approved it.
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How much tumeric do you take?
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michlept...The aromatase inhibitors can lower your platelets and thus cause bruising. You can get them checked by a simple blood test. Good luck to all
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ejmann44-- My holistic doc was the one that turned me on to turmeric. He gave me these instructions: Take 1 capsule (500mg) a day for a month. If you get an improvement in your pain, continue with that amount. If you don't, then take 2 capsules a day for a month. If you still don't get relief then turmeric just won't work for you. Hope this helps!!
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I have some questions about Arimidex (and other AIs).
1. Do side effects on the medication get worse over time? Specifically does joint pain get worse?
2. After stopping the medication, has anyone had joint pain persist? For how long? Or get worse?
I started Arimidex this year and at 1.5 months developed neck pain, back pain, worse carpal tunnel, trigger finger, and tennis elbow that were debilitating, partly because there were so many areas of my body affected. Prior to this, I had known arthritis in my spine which caused some nerve pain flare ups about every three years for a few months (but no regular pain), no back pain. Also had very mild carpal tunnel. I felt well. My MO proposed three weeks off the medication then a trial of Aromasin. In three weeks, fatigue, cough, sore throat, fuzzy brain, and leg cramps had gone away completely. But all of the muculoskeletal problems were there and troublesome. MO told me that they had nothing to do with the anti-estrogen action, and were due to something else. If I had just one ache and pain, I could certainly buy that it was chance that it showed up right after the medication was started. But I went from being a very well, active, strong, athletic person to very limited by multiple joint and tendon symptoms. I just can't buy that it was chance. Or that I am crazy: when medicine does not truly understand a mechanism, is thwarted in efforts to provide effective treatment, and does not have detailed research, there certainly is a predisposition to blame the patient. To me it seems that in areas where I already had some degenerative disease or structural problem, when estrogen was reduced, something else happened that was not remedied by letting estrogen levels rise again.
Any thoughts?
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Terrane- are you doing better on the Aromasin? My experience in following these boards is that there is a very small number of woman who struggle with all of the AI meds, but the ones who have a reaction suddenly to one, will do well on another.
Some of my Arimidex side effects subsided after the first couple months---mild nausea, fatigue, I didn't have any joint pain to complain of until I was 2.5 years in. But the Arimidex did spike my Cholesterol and my liver enzymes (for two tests 3 months apart). My MO had me stay off the armidex for 3 weeks, then go on Femara--I lasted 4 days on Femara and my joints hurt so bad I thought I was 100 years old. It took a long time for the Femara pain to go away and then I went right back on Arimidex. My Onc and I are playing with a reduced dose to try to get me to the five years. I went completely off for a month and 2 weeks and my pain was completely gone---then I started back every other day--still no p ain, now we are trying missing two dose a week, and if I tolerate that, then maybe just skip one. We are not one size fits all.....
the Femara board has women who say the Arimidex was the worst thing they tried...
So I would suggest you talk to your MO about trying the Femara. You may do quite well on it. My understanding of Aromasin is that it permanently kills your aromatase production. Even when you stop Aromasin, you will not get back to how you felt before the drug....Something to discuss with your doctor. There are some good explanations in the Articles on the main site of bco.org on hormonal meds and how they differ.
Don't despair---there is something that will work for you. Your oncologist is your partner and should listen and try to work with you.
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Hi everyone, I just started Arimidex about three weeks, and like everyone here, have joint pain on the hands, feet, back of my arms, back of my neck when I get up in the morning. At first I'm not sure if it was the pillow thing. Is this how I'm supposed to feel for the rest of my life on AI. I'm post menopause so I don't want Tamoxifen. Right now I'm also doing radiation. I'm taking vitamin D, Calcium, have history of Degenerative disk disease. I want to take Curcumin, an extract of Turmeric, but heard its not safe for hormone positive BC. Does anyone have any suggestions to reduce the pain, besides taking other drugs? I'm not into western drugs and very much into alternative therapies. I'm planning to get massage and water therapy as well.
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Houston2016, not everyone has problems with AIs. I don't and several of my friends have done very well on them. I know many gals do have awful SEs but NOT everyone. You said you don't want more medications but you might consider Claritin (regular not "D") - it has helped some women. And as mentioned earlier, sometimes the SEs go away as your body adjusts to the Arimidex. Another factor could be the fillers are causing your problems. Each manufacturer uses different fillers - those do NOT have to be identical to the brand name drug. So switching manufacturers can help. When I first started anastrozole 2 years ago, the gals were recommending the generic made by Teva as causing the fewest filler problems. So that's what I started on. That could help. Even switching to the brand name might help. So there are quite a few things that might help. Try any or all of them. And, of course, consult with your MO if the SEs get worse or do not improve.
HUGS!
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Wise words Peggy!!😊
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I agree with Peggy. Brand can make a huge difference. It is often the fillers that cause problems. I started on a generic brand and after 3 months I could hardly hobble around. The joints in my hands were so painful I couldn't hold a pen. I switched to name brand Arimidex and the improvement was astounding. I take Calcium/Vit D and magnesium.
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Thanks for your thoughts. I have not started Aromasin because I hurt so much and feel like 100. I am about 8 weeks out from quitting the Arimidex and I want to see if it calms down or at least get a pain management plan going.
The oncologist basically told me this was not related to the medication, since it persisted after I quit, and asked me to come back in 6 months. Considering what to do next.
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My MO said "you may get some joint pain". Funny man.
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I feel very lucky that I don't have any difficult SEs with anastrozole (TEVA brand generic). I have had a couple of very odd hand tremors recently (after almost 3 months on this med). Could it be the anastrozole? This would be a problem if it continued or became a regular thing. What else could it be--any ideas?
Also, I recently read that generics do not all contain the active ingredients/the same amount of active ingredients even though they are supposed to. There has been a complaint to the FDA. That's a bit worrisome.
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Michele - I'm sorry for your pain. I had significant joint pain too but it has eased. I've been on Letrozole since April. I started taking Jerrosil for my hair per Dermo recommendation. Hair is same but joints feel much better. It is silicon (not to be confused with silicone). I take 10 drops in a glass of water each day. Also, I find yoga very helpful.
Good luck to you.
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starting Arimidex today after almost 2 years on Tamoxifen. I've had few SEs from Tamoxifen, hoping for the same with Arimidex.
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Terrane....so sorry you are suffering. One of my biggest pet peeves is when docs don't validate SE's from medications they are prescribing! To answer some of your questions, some people experience SEs getting worse over time and some better over time. The most common SE of aromatase inhibitors is joint pain. Unfortunately some people do experience permanent joint problems. As others have said some people do better on different A's or different manufacturers. Good luck to all navigating this disease.
Redheaded1....IMO you have to be really careful about saying things like very few people have trouble with aromatase inhibitors. Don't get me wrong. I'm very happy for those who do well on them, and I'm certainly not saying don't take them. I just think it's very important to make informed decisions. The fact remains that only 50 percent of women complete the 5 recommended years on anti hormones due to SEs. Add the others who manage to stay on them while experiencing mild to severe SEs and that's a pretty significant number. I hope and pray that better treatment options will be available to us in the future.
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Dtad--I think what I said (or what I meant to say) was that very few people IMO from reading these boards have trouble with ALL aromatase inhibitors. and that MOST of us are able to find a drug that we can work with. I don't want to encourage anyone to fall into o the 50% failure stat. But that's a personal opinion as well.
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It's hard to know for certain all the reasons those 50% stopped taking an antihormonal. Some are for the same reasons that they stop taking other medications their doctors have prescribed. Don't think it is working, don't believe you need the drug, drug reminds you of an illness/medical situation you want to forget, you keep forgetting to take it, and such. I'm sure most of us have been tempted to or stopped taking a medication or supplement at some time in our lives, and painful SEs were not the reason.
Here's a Medscape article on this. http://www.medscape.com/viewarticle/818850
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Just going by what my MO at a major NYC university hospital told me when I was diagnosed. For whatever reason they stopped, hopefully we will have better treatment options in the future. Good luck to all.
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Has anyone been diagnosed with osteoporosis? and anyone getting Reclast infusion? I was told my insurance wouldn't cover Prolia and the MO wants me to take the reclast infusion... there's a lot of negative sides to it and I told them I wouldn't take it..
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Judy, it is possible that you can get your insurance to pay for Prolia but you and your doctor have to fight like hell to get it and show that it is the best option for you.
HUGS!
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Thanks Peggy.. I have a friend that takes fosamax and is doing ok, I'll check on that too
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Judy, I've had no problems with Fosamax even though I have GERD. I just make sure to drink at least 8 oz of water after taking it, staying up, and waiting 30 minutes to eat. Seems to work for me. Hope you find something that works for you.
HUGS!
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I have just started Arimidex a week ago. I was on Tamoxifen from June-December 13th, but after having a Total Hysterectomy (fallopian tubes and ovaries included) my oncologist and I decided that I would be better on the Arimidex for long term. I am only 40 and am looking at 10+ years on Hormone Therapies of some sort or another. I hope I don't get the SEs too badly. My MO also prescribed Calcium and Vit. D to be taken each day with the Arimidex.
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