For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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CeliaC - thank you for the links. CindyNY - I've read Claritin can help with the bone pain, you've probably already read that. Have you talked with your insurance and your doctor to see if you could get the name-brand drug? I spoke to mine yesterday and because of the side effects I am having, my next refill will be name-brand (I'm still afraid it is not going to work, we'll see). I have leg cramps and have been reading - wanted to share this link on baking soda and water: https://www.peoplespharmacy.com/articles/leg-pain/
It talks about other remedies too, some you are probably familiar with. Here is the text:
Imagine this: You're sleeping peacefully, with not a care in the world. Then, like a bolt of lightning, you are wide awake and in excruciating pain. A muscle in your leg is contracting so strongly that it wakes you out of a sound sleep. To ease the pain, you need the muscle to relax. But coaxing a muscle to let go can be tricky. If such sudden nighttime leg pains occur frequently, they can wreak havoc with your rest. And that can have negative consequences for your overall health.
"When I get severe leg cramps, my calf muscle becomes hard as a rock. The pain is so severe that I panic until I can stop it. It's rather like being asleep and getting woken up with a hammer blow to the thumb.
I tried massaging my calf. That didn't work. The pain doesn't quit until I can flex my calf muscle. During a leg cramp, my foot is in a position as if I had on high heels. Forcing the foot into a more normal position by pushing the toes and heel onto the floor usually stops the pain. This hurts, but it works.
Every time I have gotten this kind of cramp it was because I was dehydrated. Any sports trainer will tell you that cramps are a sign of dehydration."
Although dehydration may lead to mineral imbalances that could contribute to muscle spasms, doctors don't always know why some people develop nighttime leg cramps. They often don't have good treatments, either. Many physicians prescribe quinine, a natural medicine derived from the bark of the cinchona tree. It has been used for centuries to treat fevers, especially those due to malaria. While this drug can be effective against leg cramps, there are a number of potentially serious side effects associated with quinine. They include ringing in the ears, rash, and, rarely, liver damage or life-threatening anemia.
Consequently, it makes sense to try home remedies or dietary supplements first to see if they work. That's true even though some of the home remedies may seem a little strange. What works like a charm for one person may be totally worthless for someone else. This is truly a case of trial and error.
Health care professionals generally consider leg cramps more of a nuisance than a serious health problem. Nonetheless, anyone who suffers from nighttime leg cramps knows that they can disrupt sleep, and that can eventually have consequences for health as well as mood. Finding the remedy that suits you best may require some trial and error. Don't be afraid of the home remedies: They may seem silly, but since the only prescription treatment, -quinine, can have such serious adverse effects, we think they are worth considering.
"I had terrible leg cramps, and nothing helped. Then my husband got some liquid calcium, and that worked immediately. I have not had another leg cramp.
He decided to try mustard for leg cramps, but he still had leg cramps and really did not savor the mustard. He decided to try turmeric, an ingredient in mustard. He took 1/2 teaspoon at bedtime and 1/2 teaspoon at breakfast. BINGO! This worked great. Not only did it cure his leg cramps, but it also eased the pain in his hip and feet.
He recommended I try it for my awful foot problems. It felt like an ice pick was stuck in the ball of my foot. As soon as I started taking the turmeric, I had no more pain. I can now wear my lovely high-heeled shoes on Sunday without suffering."
- Tuck a bar of ordinary soap under the bottom sheet when you make the bed. It should be near your legs, and may need to be replaced every 6 weeks or so. We don't know why it would prevent leg cramps, but many readers report success–and we know of no side effects.
- Swallow a teaspoonful of yellow mustard–the inexpensive kind sometimes dispensed in individual packets. We think it may be the turmeric in the mustard that helps. This remedy can work very quickly, though some readers have reported heartburn as a result.
- Sip about an ounce of pickle juice. Some pickles may contain turmeric, so perhaps that explains why this helps some people fight off muscle cramps so quickly. Or, it may provide some missing minerals. Pickle juice is high in sodium, so this home remedy is not for anyone on a low-sodium diet.
- Baking soda, 1/4 teaspoon in 8 ounces of water, is reputed to fight painful leg cramps quickly. Baking soda contains sodium, so it is not for anyone on a low-salt regimen.
- Pinch your upper lip firmly between your thumb and forefinger until the cramp eases. This may have the effect of providing a distracting pain that is under your control. Many readers claim it is helpful, although we have not been impressed.
- Stretch leg muscles for several minutes before bedtime.
- Consume plenty of potassium-rich vegetables, especially low-sodium V8 juice. Increasing potassium intake seems to help prevent leg cramps.
- Take a supplement of 300 to 500 milligrams of magnesium a day. Reduce the dose if this gives you diarrhea. Avoid magnesium if you have kidney disease.
- Try 4 ounces of Pedialyte after vigorous exercise to replenish minerals and prevent muscle cramps.
- Consider B-complex vitamins to prevent cramps. Keep the dose of vitamin B6 under 100 milligrams per day to avoid nerve damage.
- Ask your doctor about quinine. It is available by prescription (or at low doses in some brands of tonic water). Severe side effects are uncommon but may be life-threatening, especially a blood disorder called ITP.
As Peggy says, HUGS!! I'm trying the baking soda tonight!!0 -
Could I just add - my evil side - wouldn't it be nice if the MO office would give you a sheet of paper that said, you might have these side effects, blah blah, and then, you might try this to help you? I guess maybe, for legal reasons, or whatever, they just don't. Thank the good Lord for you ladies that offer suggestions. Hugs, Lisa
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One other thing, oh if my mind would continuously work - CindyNY - organic sulfur or MSM is good for joint pain.
I met a man in the infusion room that talked to me about organic sulfur months ago - he has lung cancer. At the time, I thought, I've never heard of this and I, in his words, "blew him off." I started anastrazole and had knee pain and went on here, of course, to look around for tips and found MSM, which is none other than -- organic sulfur. We laughed about this at our last infusion together. He had also told his MO he was taking this when he started treatment and she suggested he didn't, and when she has seen how much it helped him, she changed her tune too. Hugs, Lisa (I will quit posting, sorry, don't mean to be a hog)
P.S. - it doesn't taste really good, so the pill is an option, you can put a little lemon juice in it if you mix it with water.
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MissouriCatLady- I'lll look into MSM, nothing to lose by trying. Thanks!
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Hello All,
I wanted to post here because so many of us have had or are having joint pain, hip pain, back pain, etc on Arimidex. My question is...Has anyone had a Zometa infusion which has helped any of the pain. I ask because February 2019, I had a second infusion and a week later began to have very uncomfortable to sometimes severe right hip pain. The pain has lasted for 6months which puts me at August 16, this past Friday. I had the third infusion and four days later I'm feeling minimum pain almost gone.
You guys would say that's great...what's the complaint??
Well, at the time of the infusion I was told that "some patients with bone cancer stated that the infusion helps the pain.
I have just had a clear MRI of my lumbar area and x-ray of my right hip within the last 4-6 weeks and they were all clear. Does anyone think I should ask for additional test or even enquirer about the pain relief. I know this may seem odd, but the pain has greatly reduced after 6 months of great discomfort. Thanks for your thoughts.
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Humblepeace I am thinking about what you describe, and sensing your anxiety and worry, for sure. If I were in your shoes, I'd ask my MO to talk me through the possibilities and put all this in a clear context. Possibly, there's another type of imaging that can allay your fears, or maybe your MO can clarify why NOT to be worried, and why those exact tests he/she has done put you in the clear.
Sometimes, we associate two things as being correlated, but they're just coincidences. The long-term effect of being on an AI certainly affects my joints, and aches come and go. For me, Zometa infusions every six months has had no effect on my comfort. When I skip my daily exercise, all of my joints are very grumpy. Hydrating really well and working all of my muscles every day is the way I'm staying comfortable.
I have hip and knee pain from arthritis, and it's a bit worse now that I'm on an AI, or maybe just because I'm also older! Anyway, when it flares up, I use an OTC NSAID (Ibuprofen, Aleve, etc.), and when it's more extreme, sometimes I use my Rx for Meloxicam (24-hour comfort). I tolerate NSAID's okay, and since it's pain from inflammation, they work well for my occasional achy joints.
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I've been gone for a while and notice a lot of discussion about brands but my experience was that I am happier with femora. I too woke up with a headache every day and after about 6 months it was pretty constant. DH and I have both noticed that I am also calmer (I really was "b___" with the anastrozole). Had a knee replacement this summer but I had had other orthopedic issues before BC and I am of an age when many of my friends are walking around with artificial parts.
The cost of cancer drugs are outrageous and the doubling of costs is tough. But I will halt my rant at that and hope "pre-existing" conditions continue to be covered. I worked longer than I had planned to so I could be covered by a group plan without a physical because of another medical issue.
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This is a good link https://www.lbbc.org/sites/default/files/LBBC_Horm...
"Guide to understanding hormonal therapy." Hope everyone is feeling good today.
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Missouricatlady - Thanks for sharing the article.
Hugs!
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I agree, thanks MissouriCatLady
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Hi all! Havent posted in years, but came here today to celebrate. I saw my oncologist this morning and she's taken me OFF EXEMESTANE (AROMASIN.) I've benn on it for FIVE LONG YEARS with awful hot flashes and so much bone and joint pain (hips, feet, back.) I feel joyful today--I tried never to focus on the side effects, but sisters, I'm here to say GOODBYE to that little white pill!!
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Marytn - CONGRATULATIONS!!!!!!! You did it!!
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Wow, marytn--CONGRATULATIONS!!!
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Marytn-How wonderful you must feel!! You pushed through and you finished. CO
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Congrats Marytn, what a relief it must be for you.
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Can I ask a question? I feel like I've been itchier lately. Like the edges of sports bras that I've worn for years are now kind of bugging me. I have random itchy places that aren't bites or anything. It's like my skin has become more sensitive or something. All I can think of is maybe the AI is drying out my skin? I put lotion on every day--have for years--and I don't think it *looks* any drier. Anybody experience anything similar?
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marytn - Congratulations! Also, I'm jealous! Only four years and three more months for me, assuming recommendations don't get updated.
Ingerp - I got that for a while and I have no idea why. It passed. Maybe you just have nerves regenerating in that area?
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Oh! Interesting. .
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marytn - CONGRATULATIONS! I'm jealous too.
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I started on Anastrozole in April (finished radiation about 1 month before). I did not have any initial side effects that were overly troublesome but over the past month or so, I have not felt great - mild nausea, fatigued/tired at least several days a week that is definitely not my norm. I have nothing to else I can correlate it to except the meds. My heart rate is btn 47-53 sometimes during sleep which is lower than normal for me (it is usually in upper 50's). I see most others mentioning faster heart rate. Don't know if there are any correlations with my Sx and heart rate or not but any one else experiencing fatigue type Sx or just not feeling great on the meds?
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I started on Anastrozole in April (finished radiation about 1 month before). I did not have any initial side effects that were overly troublesome but over the past month or so, I have not felt great - mild nausea, fatigued/tired at least several days a week that is definitely not my norm. I have nothing to else I can correlate it to except the meds. My heart rate is btn 47-53 sometimes during sleep which is lower than normal for me (it is usually in upper 50's). I see most others mentioning faster heart rate. Don't know if there are any correlations with my Sx and heart rate or not but any one else experiencing fatigue type Sx or just not feeling great on the meds?
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I think everyone needs to post their bio. Otherwise very difficult to respond.
Arimidex side effects vary greatly depending on your age, estrogen marker, and if you had a preventative ovarian removal too! Yikes.
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Marytn: congrats on finishing your meds. Here's to improved QOL.
Ingerp: I get those itchy sensations as well occasionally. I'm not sure if it's from the Arimidex or not. I take a Benadryl and use some prescription cream my dermatologist gave me for dry skin. Thankfully it doesn't happen often.
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Inerp, I also get the itches but I assumed it was do to MX and reconstruction surgery and nerves heel8ng on reconstruction side and who knows on MX side. I add healing salve, Vaseline properties, and it soothes.
Curious if any of you with MX have a constant numbing sensation - it is just so weird and hard to ignore some days.
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Mactaz—this is all over my body in weird places. I’m hoping if I ignore it long enough it’ll go away.
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Yeow, Inerp that would drive me crazy. I haven’t had this, hope it gets better
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Hello All,
This hip pain/back pain (it's in the area of where the waistband of my jeans rest on the right side).
It is really getting me down.
I have just had a clear MRI of my lumbar area and x-ray of my right hip within the last 4-6 weeks and they were all clear. The MRI showed bulged disc of L4 and L5. However, the rheumatologist states it's not enough to cause the type of discomfort I described. I'm now awaiting a the approval for a bone scan which the radiologist asked if I wanted to rule out cancer and see if it's possibly the hormone - Arimidex.
Has anyone else had pain that has lasted for over 6-7 months and it's been the Arimidex?Thanks for your thoughts and support.
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MissouriCatLady - Generics are not the same as each other and not the same as the brand name. Differences are often dismissed as fillers/color etc. I noticed an immediate change with a BP drug when the generic was switched (the previous one was no longer available). BP went up and I had difficulty sleeping. Explored the option of brand name, but it was cost prohibitive. Things have settled down mostly, but it took a couple of weeks. One friend told me her DR writes an Rx specifically for a brand name she takes, because the other ones did not work. She argues with her health insurance and pharmacist all the time. There is a very good book "Bottle of Lies, the Dark Side of the Generic Drug Boom" by Katherine Eban. You won't be able look up specific drugs, though she does mention some. But it is scary to think that depending on the drug/dose, generics are allowed to be +/- 20 percent of that dose, and that most generics and ingredients, brand names incluiding brand names, come from India and China.
https://www.amazon.com/Bottle-Lies-Inside-Story-Generic/dp/0062338781
https://www.katherineeban.com/events-1
https://www.nytimes.com/2019/05/13/books/review/bottle-of-lies-katherine-eban.html
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
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BlueGirlRedState - Thank you! I may have seen this lady on the news, I appreciate the links. As of today, my insurance has told my doctor to submit a no substitution prescription and they will let me have the name-brand Arimidex, but I cannot get a new refill until September 19th. I think it will cost more money too, I can pay a little more. I saw my MO last week, and he told me I may still have problems, they sometimes deny it, I have a feeling you're right, it is going to be a fight. I've tried different generics and have leg cramps with everything. I am sleeping with a bar (actually two) of Irish Spring soap and that seems to help, believe it or not. Thank you for your list of supplements too. I might suggest MSM (organic sulfur) for joint pain. I have a bottle from Walmart with chondroitin and glucosamine. That was very helpful, thank you. I need to get more exercise, thank you for that reminder. When you're up with cramps at night and can't sleep, it can sure mess up your life, I have to work.
I did get the $30 bottle of Arimidex from Eagle before the price went up, and I did take it for one week, kind of a test, and I had no leg cramps at all! I am saving the rest, it is like gold, for those nights of problems when I start to lose hope. Then I hear something from someone like yourself, and I get my motivation and courage back, so please know how much I appreciate your post, thank you.
I was on the Arimidex Facebook page and a lady went off on me (it was a post about a deferment on student loans of all things that ventured off to a different place), so I have left the groups on Facebook. There is also a Pink Moon Cancer group on Facebook that is helpful if anyone is interested in that. And you can sign up for no interest for 6 months on your student loan, if anyone does not know that. Best wishes to everyone, stay the course!! Love and hugs, Lisa
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My Anastrozole is manufactured by Accord. My side effects all seem to be caused by reduced estrogen production, not fillers, according to my research and my MO's explanations. I would say that I'm doing fine on Accord brand. Fortunately, no cramping as I've seen people here mention, and no bone pain, etc. I do have creaky joints. All my arthritis started whining more once I was on my AI. I mute it pretty well with my one hour of daily exercise, so my muscles support my joints. Skipping exercise makes me suffer, so I don't do daily exercise because I'm an angel, I do it as if it's medication that's required for my health and comfort and QOL. I seem to need more water every day than I used to. Might be first year past chemo, might be AI, might be age, might be my imagination!
MACTAZ Itching and numbing? Yes, I've always had this, as nerves start to regenerate many months after surgery. That's my experience, after lumpectomy & BMX later & foot-rebuilding. Also Zings of sudden sensation as signals start up. That has preceded more sensation returning, although I currently have almost no sensation in my torso--all still quite numb. Left side (didn't have radiation 16 years before) has more sensation, right side is fairly numb everywhere.
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