Hi,
I am so glad I decided to google Arimidex support group as it led me to this group. I have been on Arimidex for 4 weeks and feel xtra ache and stiff. Prior to surgeries and radiation I would get an ache or two after hours of yard work but now I wake up achy stiff and feel arthritic
I see my oncologist in two weeks. I am wondering why do these inhibitors create joint and muscle aches? Does anyone know?
Also looking for nutrition information and whether I should avoid eating soy
Thanks
So sorry you're one of the women getting this type of side effect with Arimidex. After my chemo and radiation treatments I will have to take aramotase inhibitors (AIs) for ten years, and as a physically active person, I'm concerned about the potential side effects effects, too. As I understand it through my research, the aromatase inhibitors are very, very effective at keeping hormone receptor type cancers from reoccurring. Perhaps you can ask your doctor to change your prescription to another type of AI that may not give you this side effect. There's also some complementary therapies, such as acupuncture, yoga, tai chi, to name a few, that may help, Andy perhaps some anti-inflammatory supplements (after checking with your doctor, of course) that may help. Another support group to check out is a telephone support group sponsored by SHARE that meets every other Monday evening from 8:30 pm to 9:30 pm. Even through it's called a support group for newly-diagnosed breast cancer patients, we have participants at all stages of their care and survivorship, including several who are also having difficulties with AI inhibitors. The next meeting is on Monday, September 25th, 2017, and you call in to join the group at 866-210-1669 and follow the prompts using Participation # 9353618. If you live in the New York City area, there's a face-to-face support group specifically for women having difficulties with AIs that meets in Manhattan, and all the information is on the SHARE website. Our telephone group has a wonderful facilitator, and at the end of each call we all feel so grateful for her and everyone's caring and sharing. As to the soy, I just met with my cancer center's nutritionist yesterday. She advised that the latest research shows that eating soy foods is ok for us, especially if you stick to unprocessed soy, such as edamame soymilk, tofu and tempeh, and to avoid soy pills and isoflavone-enriched powders. She gave me a 2-page handout from the Academy of Nutrition and Dietetics that explains all this, which I can share as a PDF if you'd like to see it. Hope this helps, and that you find relief through community support and through following some of the advice you'll get from the wonderful women on this and other groups who are willing to share their experiences. Best of luck to you, and hope to meet you at the SHARE telephone support group.
I would appreciate receiving the pdf regarding how we can use soy products safely.
Thank you!
Betty
I'll have to attach it as jpg on this website, which I'll be able to do this evening for you.
The website required that I make a new post to be able to attach photos only, and only one photo at a time, so there's 3 separate posts, each with one of the 3 pages of the handout.
It's possible that these side effects with ease up after a few weeks. Ask you onc about that. Femara is another AI that is very similar to Arimidex (both are non-steroidal AIs) and sometimes a person will have fewer side effects on one or the other of these meds. I agree with tinydancer1 that an anti inflammatory complimentary regime might help. My pcp suggested I try 1 cup of tart cherry juice a day, fish oil, turmeric and glucosamine/chondrotin. Also, tomatoes, bell peppers and egg plant should be avoided if you are trying to reduce inflammation. I don't mind giving up egg plant, lol, but the tomatoes in marinara sauce and on pizza is a huge loss as far as I am concerned. Talking to your onc is always a good idea before trying supplements. I was on Celebrex for arthritis before cancer showed up, and I think it helped me alot with the achiness caused by AIs. You might ask about an Rx for that or OTC NSAIDs. For awhile, I was on more meds for side effects than for cancer! How crazy is that, and even one med for side effects of the side effect med. Living with mbc is really bizarre at times! Sorry you need to be here, but glad you found this group for support and the wisdom of experience.
I'm one of the facilitators of the AI group. I also get aches from the meds. The aches are from the estrogen the pills inhibit. Thinkbof estrogen as grease for our joints. I find that walking helps, moving around, things like that, and gentle yoga. You've only been on them 4 weeks...sometimes it lessens with time, so give it a chance. If you can come to a meeting, please do. The next one is on September 28 at 6 pm at SHARE's Manhattan offices. I'll be out of town so I won't be there but my wonderful co-facilitator will be running the show. There are always great suggestions at meetings to help cope with AIs.
I remember having achy joints with Arimidex for about two months or so. I was deemed a cancer survivor in 2010 after taking Arimidex for five years. One side effect is peripheral neuropathy which causes pain and tingling in my feet. I take a product called Neur-x which is essentially B vitamins. It really helps to relieve the pain!
Greetings Sister ZooZoo10 Please do not ingest any soy products or introduce it into your body by any form including natural hormone creams, pills etc . if you are positive for hormone receptors. You shouldn't use soy foods or products/creams that mimic estrogen. Please don't use creams that have parabens in them either. I AM TRIPLE NEGATIVE, and I CAN EAT/DRINK SOY BASED PRODUCTS, and EVEN, I STILL limit my soy intake, soy milk, tofu, and edamame, to 8-10 grams a day, and I don't ingest soy every day. The most recent study I remember it relaying this information, women should limit their Soy intake in all forms to 25 grams per day. Know this, there are other foods that may also mimic estrogen in the body, maybe even foods we are not yet aware of that we may be ingesting, including now GMO's. Because you are hormone positive your doctor is giving you Arimidex to pull estrogen from your body so that this will decrease your chance of having a recurrence. Why even chance taking Soy, which mimics estrogen and , could cause a recurrence. There are people dying in third world countries for lack of a grain of rice. We have so many types/varieties of foods available to us.I think you should avoid soy. Please do the most recent research from an accredited/certified integrative or holistic Dr. Everybody has an opinion. Better safe than sorry. Nothing against great doctors and pharmaceutical companies that make life saving drugs, but holistic doctors don't make billions of dollars on prescribing natural supplements/herbs ,and holistic modalities. Everything is not good for everybody. Let God and you be your best advocate. In that priority order. Amen
I am on arimidex and have the pain and aching joints. When I woke up in the morning I could hear my finger joints cracking and very stiff. With my doctors ok I started taking turmeric, osteo biflex, and alpha lipoid for the neuropathy. It helped quite a bit. I've been on it for 2 years now and I think time has helped some too. Good luck to you.
Sorry you are having side effects from Arimidex. My sister also experienced mostly joint pain. I haven't had any side effects from Arimidex. But had terrible experience with Aramosin. Went back to Arimidex. There's not much out there unfortunately.
I was on Arimidex for about a month after stopping chemo...during that time I felt worse than ever with aches,pain, neuropathy and tiredness. Switched to Aromasin and it has been much better. I was also given a prescription for Cymbalta which helped with the side effects. Good Luck...don't be afraid to ask for a different drug.
Research shows (and I've done a LOT) that approximately 50% of the women on Arimidex complain to their docs about the pain. Approximately 1/3 stop taking it - with their doctor's knowledge. That said, suggestions are generally "take something to ameliorate the pain", not taking into account that the dosage of 1mg is given to ALL women, regardless of weight, age, post menopause, etc. No tests are done to determine what levels of estrogen,, estrodial, progesterone, etc are in your system. However, you can have these tested in an independent lab! The problem: docs do not know what level these should be. (Yikes!) Know that drugs have a "life" and 1/2 life, and over time, the build up will most likely affect you more.
Why is one given a drug so soon after radiation or chemo? Are you ready? Because if you wait too long, you'll start to feel "good" or "normal" and the fear is that you won't go on the drug. Doctor's can/will/do allow drug "vacations". This can be very telling. Mental clarity! No pain! Waking up and being able to move! Many women are not aware that they weren't "feeling optimal" until they go off Arimidex completely.
Male body builders use this drug as well - however, they dose at 1/2 mg every 3 to 4 days to avoid the pain - and go off it prior to competition. In fact, the most knowledgeable person I know about this drug (besides the Phd Md @ Huntsman) is a body builder trainer.
I've met with top researchers and oncologists regarding Arimidex. Some offer more info than others. Some will tell you, "We just don't know...yet." Such as the amount a body needs to stay functioning without the negative side effects.
Longitudinal studies aren't really long enough, either.
Best wishes...
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