For Arimidex (Anastrozole) users, new, past, and ongoing
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hi all,
i have been taking, arimidex ( Accord). is this causing the itchiness im having?
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B123- My endocrinologist is taking the lead on the Prolia and I got the first shot in his office. My MO said he could do it also but either one is fine. All my team in same network and they all talk and are on same page.0
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B123,
Prolia can in VERY RARE cases cause bone necrosis in jaw. However, my dentist and MO said that only if extensive dental work is needed and even then there are precautions you can take ahead of time. Nothing to be panicked about just need to be aware. I believe that Armidex which suppresses estrogen can affect the bones. I'm not sure exactly hue that may happen. The Prolia helps to stimulate bone growth. I'll try to find my links to information about this. Dexa bone scans will help determine if Prolia is helping.
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In my experience, Dentists are reluctant or refusing to treat dental problems because of the possibility of jaw necrosis. Because Prolia is a 6 month injection, that poses a problem for urgent dental problems. I've already had to deal with this once, and luckily my dental problem (abscessed tooth) didn't show up until 5 months after the previous injection, my rheumatologist convinced the dentist that the risk was low if I waited 6 months after the last injection. So I took antibiotics for the month while I waited. Still, the infection from an abscessed tooth can go straight to your brain. So in my opinion, there's no good answers. Yes, you can get a dental exam before starting on the medication but there's no way to anticipate problems, especially if your planning to take the medication for years. My answer was that I stopped the Prolia.
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I suddenly have tendonitis on the inside of my left elbow, also called golfer’s elbow or climber’s elbow. I don’t golf or climb. Since I finished chemo, I’ve been slowly getting back into Pilates and low impact aerobics with Therabands. I have been on Anastrozole about 2 1/2 weeks. Dr. Google tells me that tendonitis is one of the side effects of this drug. It could also be a lingering effect of chemo. I had tendonitis in my left foot throughout chemo and for a couple of weeks after, but I’ve had it there several times in my adult life. I’ve never had it in my inner elbow.
So far it’s not bad enough for pain killers. Just annoying. Any advice? I haven’t called my MO. I’m going to try icing and self PT to see if I can cure it.
Is it just coincidence all of this inflammation is on the left side where I had cancer and nodes removed? I’m right handed and footed.
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I’ve been on anastrozole for four months and am having severe joint pain. MO says to take 5000 Units Vitamin D daily. I got D3 and stopped it after two weeks because of terrible stomach pain that seems to be associated with it. My bone density and Vit D levels are currently normal. I run, which helps bone density. I’ve never taken supplements, other than B vitamins during chemo, which I stopped. I eat a better than average diet. Why should I take vitamin D? Everything I read online says that 5000 Units is too much, except the Vitamin D Council. Who is the Vitamin D Council? What is their agenda? I am very skeptical.
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It should be D3. I take 5000 daily, have for years, even befor Cancer. Your body doesn’t make this, can’t get it from sun exposure. I take it to help with my fibromyalgia. Taken with calcium supplements it helps absorption of both. Some people who are low take 50,000 units weekly, rx only. My MO also told me to take 5,000 daily when I started Arimadex along with 1,200 calcium daily to try to prevent bone loss.
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Spookiesmom, everything I've read says you DO get Vitamin D3 from sun. But you say not. Source?
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Probably Mayo. Or my pain doc.Your body gets D1 and D2 from sun and food. Have a doc run a blood test to see where your D3 level is. The low end of normal at my lab is 40. I was at 17. Currently around 50, and feel so much better. Didn't do much to help my bones, the Arimadex pushed me into osteoporosis anyway. I will continue to take D3 for my fibromyalgia.
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I have fours years, one month, and three days remaining on Arimidex.
Not as long as five years when I started. LOL
@kaemd99 ... The generics I took caused awful scalp itching.
Coach Vicky
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Spookiesmom, patients who take 50,000 units vitamin D weekly by rx are taking D2, ergocalciferol, not D3, cholecalciferol, which is what you get OTC and is the more standard D supplement.
Units are not interchangeable for the two products. Some people need really high doses to get to a decent 25- OH D level of > 30 which is what is recommended by the Endocrine Society for rx of osteopenia and osteoporosis (e.g., ergo is often needed in people who are obese, or have poor GI absorption from GI problems, or who just like the convenience of one little capsule weekly rather than several daily).
So for bone health while on arimidex, many but not all need extra D, plus adequate calcium from diet or supplements, (1.2-1.5 gm elemental calcium in divided doses per day, as citrate rather than carbonate if on an acid blockers or had stomach surgery) and in most cases with an anti-resorptive, be it prolia or bisphosphonates, for OPorosis or worsening OPenia.
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chronicpain, you seem to know this subject so I’ve got a question that maybe you or someone else can answer. Ive seen various numbers mentioned as optimal baselines for tested Vitamin D level. >30,>50, etc... yet the normal range in the labs at my university affiliated cancer center, is 13-62 mg/ml. Why is a number in the bottom of that range really bad, need to take supplements, if it’s considered “normal”?
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H bareclaws, apparently some studies have shown that many BC patients have vit D levels either below normal range or in the bottom part of the normal range. Many oncologists believe that keeping vit D level in the higher range might be helpful although nothing is proven for sure. When I started BC treatment my vit D level was above 30. My MO put me on 4,000 units of D3 daily which raised it to 70 fairly quickly. My PCP believed that was too high, so we worked out a regimen that keeps me in the 50-60 range.
However, I don't think causal relationship between the lack of vit D and BC has been proven. AIs add another tweak to this picture because women on AIs usually start losing bone mass faster and vit D plays important role in building bones. So you want to have good level of vit D for two reasons: first, to help your bones (if you are on an AI drug) and second, to hopefully help reducing the risk of recurrence (not proven though.)
The above is just my very basic understanding of the vit D story as it relates to BC patients.
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hi all
Went to MO yesterday so far ok
Wasnt happy I havent taken the boniva
Referred my skeptical ass to an endocrinologist to evaluate what form best
Has anyone else had good results with boniva??
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Hello everyone, just joined this beautiful community a few hours ago.
Now I have a group with similar situations to communicate with. Currently
in healing from a lumpectomy. Note: This will be my second lumpectomy
in 25 years on the same right breast. Briefly, my oncologist has me on
Arimidex and not sure I want to be taking this for 5+ years. There must be
an alternative. Fortunately I didn't have to go through radiation and chemo
like on my first lumpectomy 25 years ago. Also was on Tamoxifen for five
years and stopped taking it. Any feedback would be appreciated.
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LM247 and to everyone just starting on Arimidex, please remember that not everyone has problems with it. I've been taking it for 3-1/2 years with no problems. I also take Fosamax. Don't anticipate that you will have a problem. You may not. If you do, then this is the best place for information on coping with the problem. If you are a bit creaky in the morning like many of us, Arimidex or not, take a plain (not "D") Claritin daily. That can help. It seems that AIs are the best things in the arsenal for keeping BC from coming back. As with everything to do with BC, no guarantees, of course. There aren't any guarantees in life.
HUGS!
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I have tried taking Anastrozole twice now, but had to quit each time because of side effects. I now see an Opthamologist for my eyes, an Orthopedic for my joints (looking an multiple joint replacements). My Oncologist recommended a Pulmonologist for my shortness of breath. Has anyone who has suffered from severe shortness of breath found any relief?
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PontiacPeggy: Thank you kindly for responding, much appreciated. Hanging in there, still dealing with some pain. Breast had fluid buildup that was causing pain and needed to be drained otherwise I seem to be doing okay with my daughter who is a oncologist nurse and has been very helpful with all these appointments and understanding more clearly what these doctors are sometimes talking about. Hope everything is going well on your end PontiacPeggy
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Like Peggy, I urge everyone to give AI's a chance. We all seem to react to them differently and need to work with our MO's to get the best fit. I did Armidex for 6 months and switched to Femora in Dec. Joints are creaky but they were before. Migraines are less frequent. I take claritin, glocoseme and chromdrodin and Calcium with Vitamin D. Would like to drop a few pounds but I weigh about what I weighed at first MO visit in Jan. 2017. Significant vision change but I blame that on the taxol. LM247, I think you will find that the treatments have changed and expanded since your last cancer. Good luck.
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Let me echo the other posts. Everyone responds differently. Keep requesting a different manufacturer until you find the right one. I ended up tossing a couple of brands before I got the brand name. My insurance gave a 99 year exception for it. LOL.
Coach Vicky
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I’ve been taking Fosamax (sp?) since December, and have had zero issues with it. My MO prescribed Boniva, but insurance wouldn’t cover it. I’ll talk to him at my appointment in May. I can change my Rx insurance to cover it next year if he prefers Boniva. I’ve always had great (and large, unfortunately) bones until I started taking stuff for my hiatal hernia years ago. Fixing one thing always seems to cause something else!
I started taking anastrozole (Accord) 7 months ago, and didn’t have much in the way of side effects until the last month or so. When I get out of bed, I can almost not move for 30 seconds or so, then I hobble for 5 or 10 minutes. I have back pain, which I’ve never had, that goes away after I’ve been up a while. I feel hungry a lot, which I almost never did at this level before. I’m going to talk to the pharmacist about getting the name brand, and see if that helps. Also, my niece, a PT, recommended turmeric instead of glucosamine and chondroitin. She said the latter is more for people with good joints, which I didn’t have even before this BC journey. My biggest problem is remembering to take it 30 minutes before a meal. Maybe I’ll try taking one with my bedtime meds.
I also have a dry cough, which I hadn’t associated with anastrozole, but now see that is also a side effect. I’ve had a not of numbness in my fingers, that I don’t know whether to chalk up to chemo, carpal tunnel, anastrozole, or the fact that I knit a lot, which probably restricts the blood flow to my hands because of the way you hold your arms. Last week I had an incident of my left thumb “buzzing” and hurting briefly, but that’s the only time that’s happened so far - neuropathy probably? I also have Reynaud’s, but that usually doesn’t bother me unless I grab something really cold.
All in all, this really sucks!
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Irwells, I also have the cough and carpal tunnel. Another sister on this forum suggested I get and wear a night brace, which I have been doing. It helps tremendously! I still have occasional tingling and numbness in my hand when I wake up but it’s so much better. My MO is sending me for a chest x-ray because of the cough. Also a knee x-ray because my left knee started bothering me. I’ve been taking glucosamine chondroitin and, despite studies saying it does no good, it seems to be helping me.
Oh - and I also have Raynaud’s!
MJ
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hello ladies
Today is my Last day with tamoxifen tomorrow gonna be my first day with arimidex
I just have Lupron shot
Wish me good luck
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gigilala,
I am one of the few w minmal SEs. Other than minor occasional joint pain comes w temp change none. No brain fog no mood swing no hot flashes no insomnia either.
I think the reasons are chemopause brought in menopause at the same time. Claritin helps quite a bit. Anti-inflammatory diet ( I eat btw. Just that I make conscious effort to eat good food first) walk as much as possible. Yes I would never take generic (thank god for eagle pharmacy where I get $1 per pill brand name)
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Good luck Gigilala! I also just started anastrozole yesterday. I also receive Zoladex shots to supress my ovaries.
My MO wants me to do this for 5 years, so until I am 39. I had very little side effects from Tamoxifen so I'm hoping the same for this drug. I guess my 40th birthday present will be that I am allowed to have periods and estrogen again. LOL
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Does anyone have swelling in the arms/hands/legs because of the Anastozole? Lymph nodes were taken out of only the right side and my L-dex numbers went up. But on the left, my hands seem to have swollen enough I can't wear my wedding ring. My weight has not changed.
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tnd22
My hands and feet swell. This started during chemo and continued thru Herceptin only (ended August 2017) and Arimidex (started April 2017).
I can eventually get my wedding bands on but not every day. I will probably have them resized.
My Oncologist prescribed a diuretic and potassium tablet daily. I weigh in the morning and after my diuretic and potassium pills, I will weight at least 1.6 to 2 pounds lighter.
Coach Vicky
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Did anyone have lymphedema symptoms in the area where nodes were taken after being on Anastrozole for a few weeks? I haven’t had issues after surgery and through chemo except a little extra heat in the breast in the weeks following surgery. These last few days the heat is back, and reconstruction has fluffed more or is a little swollen. No fever. No redness. 5 months since surgery. 8 weeks since chemo ended. No rads.Which doctor do I call if it keeps up?
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I highly recommend regular Manual Lymphatic Drainage (MLD) massage anytime after any surgery and every month or so for life if you've had nodes removed. It's a speciality massage certificate and sometimes can be hard to find but worth it!
Also, you can do your own MLD with a brush and it also can really help support lymph drainage-- so important for health.
https://www.healthline.com/health/how-to-perform-l...
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