Arimidex - Coping with the SE's
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Hi Ladies, Have been on Arimidex for the past 14 months. Aside from joint pains, I noticed lately that I have indigestion late in the day and feel nauseous after a meal. Just checked the astra-zeneca Arimidex SE website and sure enough, nausea is up there with joint pains. Anybody else experience this? What do you do? Hate to have to add another medication to my arsenal of drugs.Seems like the longer one is on the drug, the more SE's one develops.
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TokyoSing, I have GERD from before bc, and have had to increase my medication to keep the heartburn under control. Here in the States we have over the counter medications that you can take for a few weeks that help stop heartburn and nausea. Do you have anything like that you can try? The meds here are Prilosec (omeprazole), Nexium, Reglan and a few others. I take omeprazole (Prilosec) and have for years. One side effect of taking meds like Prilosec is that they can cause bone thinning over time.
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Yes, I've been having slight nausea after meals. I've had GERD for years also and try to minimize the Prilosec, mostly take Zantac -- which helps but not so strong. I mentioned earlier that my bone density is holding and actually increased density in lumbar spine since 3 years ago -- this has to be from the steady weight-bearing exercise, which I've increased since the bc diagnosis in Dec. 2010. Sometimes I have to force myself to go outside and walk or bike, so put a treadmill in my bedroom; also have a tai chi/qigong center across the street and go there to classes 3-4 times a week. It's practically a career, so I'm lucky I'm semi-retired, have my own business part-time and can schedule the work-outs.
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Jo-5, it's good to hear from you! I'm glad you're doing well and no longer are having to deal with the SEs from the little white pill.
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Ladies: Can anyone tell me "why" we are told to use Replens or like such products? I first thought they are for just sexually active women but it sounds like the unactive ones like myself are advised to use it also. I told my Onc this week I was not sexually active at my "great" age and I hated having to use that stuff every 3 or 4 days. He said I could just use it once a week and see how I do. Is anyone on here using it just once a week and doing ok. My new GYN recently told me that vaginal atrophy does not really cause any destruction to the area. So why do we have to use Replens and the like at all? Does anyone know? Thanks!
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Medigal, were you advised to use it originally because you had some complaint and that was the recommendation? No-one ever told me I should take anything to prevent vaginal atrophy but I never mentioned any issues. I did check the Mayo site and they mentioned thaere are increased risks for UTI's with lowered estrogen. With me, so far, so good on this AI.
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patoo: A couple of years ago, I started having severe pain in that area and it was not a UTI. I was put on a daily low dose of 50 mg. of Nitrofurantoin and my gyn wanted me to use a cream with a low amount of estrogen because he said I was so dried up in that area from lack of estrogen. My Onc said NO WAY! He said if I need something for the dryness the only thing I could use was Replens. I have a new gyn now and he says the Replens must be helping because the area does not look that bad. So, I guess maybe I should just keep using it to keep it moisturized. The daily Nitro seems to be doing the job of keeping whatever was causing that pain at bay. Frankly, from what you posted, I don't think Replens is necessary for everyone unless they are still sexually active. I am cutting back on how frequent I use it and will see how I hold up. I don't even know what vaginal atrophy is. I just thought it meant that if we took the ALs we would end up with no vagina or something. Shows how educated I am on this stuff!
Looks like I have 8 more years to stay on the Arimidex from what my Onc said this week. He wants me covered by something for a 15 year time table to help protect me. Maybe I will make the Guiness Book on bc patient who stayed on Arimidex the longest!
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I would have thought the Replens was just for sexually active women. Strange. Vaginal atrophy? What the heck...something else to look forward to? I had never heard of it.
I just worked out and the pain in my hand was decreased afterward. Strange.
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Medigal, 8 more years - Wow! My MO says I only have to stay on for 5 so I only have a little less than 3 to go. Hopefully there will be more info available by then and they will have a better idea of what the optimal time is. I also had not heard about vaginal atrophy until I saw it mentioned on various threads here but, like you, I'm not sexually active. When I first saw the term I thought of the term 'use it or lose it' so maybe the Replens is helping you to not lose it, and maybe mine is already gone
Burley, so many things seem 'strange' since we began this walk. And we don't know if it's related to the AI or not.
Having fun yet?
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Medigal: Atrophy is a term that means wasting or shrinking of tissue. For instance, someone who is bedridden or paralyzed will get muscle atrophy, where the muscles shrink and contract. I've just started Arimidex - thanks for the good news about vaginal atrophy
, another fun side effect to watch out for! I'll add that to my list of thing to discuss when I go back for my 3 month follow-up with the oncologist. Urgh! 0 -
I started the generic arimidex last saturday. Today I felt crankiness overcome me. I felt similar to how I used to feel when I had PMS. I can't imagine feeling like this for years and years. It is a terrible feeling and I have nothing else to blame it on. I am not a cranky person and I felt like some sort of heinous b****.
Please tell me this is an anomoly and will go away soon.
GInger
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Re: vaginal "atrophy," just think "dryness" and it does happen with Arimidex or generics, just as it happens with normal menopause. My understanding is that vaginal dryness can increase the risk of urinary tract infection (UTI). I'm not sexually active but I also have the pain Medigal describes and thought it was a UTI. Here's the rub: REPLENS CONTAINS CHEMICALS (PARABENS) THAT SOME CONSIDER A CANCER RISK. After an Internet search and testing of natural products, I like Emerita Personal Moisturizer with aloe and vitamin E. If you want a natural product with an applicator, the only one I found is Yes -- it's more expensive but there are multi-buy offers. I've used the water-based version. But with no sexual activity the Emerita works fine, I just smooth a bit on after urinating. It doesn't completely eliminate the discomfort, but helps a lot.
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Ladies: I think my Onc is ticked off at me for refusing to leave these discussion groups so he decided to share the "real" info about my diagnosis with me. This is why I have another 8 years to go on the Arimidex. I have already done 8 and I was bitchy before Arimidex but I do love to cry and scream "it is the Arimidex!" when I want to get away with bad behavior. Oh goody! Another 8 years to have an excuse to be a bitch. By that time I'll be so old, I'll be too tired to have tantrums! Have in there ladies. Nothing lasts forever. Only bc "seems" to last forever!! 0
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hi medigal
could you inform us about your dx?
Usha
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Vaginal atrophy - chuck the Replens - and try Coconut Oil. I use the Whole Foods "generic" 365 brand ( has a slight coconut smell) and it doesn't sting like the Replens used to. Tried everything, and this is the only thing that's worked for me.
Medigal - I'm surprised an oncologist would know that you "need" 16 years of being on an AI. there are no studies that go out that far. Are you at a major cancer center, or on some kind of a clinical trial.
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Ladies: My Onc seems to be keeping abreast of research with certain medications for bc patients and informed me that the last trials showed only Replens or something with "no" estrogen at all is safe for bc patients with "my" diagnosis of being ER+PR+ Her2 neu+. I was not able to get Herceptin at the time of my diagnosis so he feels I need the extra protection of Arimidex for the 15 years he said is projected for the span of whether or not the bc will return. If my bc was not as aggressive the span might have been the regular 5 years we hear so much about. However, I had a 3.2 cm tumor, Stage 11B and 1 positive node out of 27 taken. He refuses to give me a "grade" because he doesn't seem to believe in "grades". He just calls it "high". He explained that this means I will have to survive the bc not returning for 15 years before he can feel I may truly be free from it returning. Since I was diagnosed on 8/2003 that means by 8/2011 I will have survived 8 years without it returning. However, that still gives me 7 more years to go before he can stop the Arimidex and feel I can go unprotected. I started Arimidex about 1/2004 so I am going on 7 1/2 years with it.
He made it clear to me that if I return to this group and we exchange info that you must know that his decisions are just for "my" diagnosis and you should be doing whatever your Onc feels is best for your diagnosis. Evidently, he treats his other bc patients according to whatever their diagnosis is. I am with a Cancer Center named for my state and this particular Oncologist came very highly recommended to me by another doctor. In fact, the doctor said this particular Cancer Center, in his opinion, rated just as highly as the more well-known ones like Mary Anderson, Sloan, and the rest. He was "very" determined that I make sure I see this particular Oncologist because he felt he was the best for my diagnosis. So, other than his having a "thing" about these bc support groups, I have had no problems with him. I tried to make him understand that the women I discuss with on here are too mature and intelligent to think they should use on themselves what some other Onc is doing for their patient. We are all individuals and don't all have the same diagnosis. I just like the idea that "if" some of us are on the same med like "Arimidex" we can exchange info on some of the side effects etc.
Caerus- My Onc is not continuing me on the Arimidex for over 5 years due to the Arimidex studies. He feels they cannot prove taking it longer harms a patient and as long as my bones don't deteriorate on it, he feels I am safe taking it as long as possible. The only side effect he is concerned with seems to be bone deterioration and he checks my bone density yearly and my Vit D3 blood tests before every visit. This visit it was a bit lower than he liked so I am taking a few extra D3 pills to get it higher.
He is not concerned about the emotional SEs and I think it is because he feels saving my life is worth the cost of being depressed and a basketcase at times. I know some of you take anti-depressants but they have a bad reaction on me so I just get used to having my "crying" spells and tell myself at least I am alive to still cry. I am not on a clinical trial but a while back was asked if I would be since very few are willing to take Arimidex over 5 years. I told them no. After it is over, if I survive the extra 8 or so years, my Onc can turn over his reports to them if he feels it will be helpful to others. At this point, I feel each Onc must make his own decision as to whether or not he wants to continue his patients longer than the normal five years.
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Has anyone who was on namebrand Arimidex and was switched to generic anastrozole noticed any different side effects? While i have the same basic joint pains and stiffness, I have two new SEs that I can only attribute to the generic product (maybe some inert/filler ingredient used): 1) facial breakouts and 2) odd smelling urine.
They started up not too long after I switched over last summer to the generic. I can't think of anything else that would cause either. I'm not taking any other med...I even weaned myself off Prilosec. At most, I take one or two Aleve a week for the joint pain.0 -
I switched over from Arimidex to generic shortly after it became generic, what was that, last summer? I've had no changes in side effects. I'm in my last year of AI treatment.
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Native Mainer, Marybast...thanks for the helpful replies about GERD. I was just in Boston and Chicago and yes, I have over the counter Prilosec and Zantac but worry about bone thinning, which is also an SE of Arimidex. I was hoping somebody had some tips on probiotics or other alternative aids.
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I'm pretty worried about the bone thinning too. I've only been on Arimidex 3 months and had a bone density scan that shows my bones are thin. I'm taking D3 and Calcium but the doc wants me to start Boniva too. He said the Boniva might be a problem if I have GERD. I'm not sure what to do yet.
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TokyoSing--the bone thinning side effect comes with long-term use, as in years. Many people get good relief of GERD symptoms doing the 2 or 3 week cycle, then repeating it when/if the problem recurs. I need to be aware of the bone thinning because I have severe GERD and cannot go off prilosec without serious heartburn and esophageal damage. I've been taking it daily for more than 5 years. I had a bone density test a couple years ago and have no bone thinning despite prilosec x 5+ years and arimidex x 2 years, so it doesn't happen to everyone.
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Hi everybody, I think my post got lost so I am reposting in hopes of some insights.
I started the generic arimidex last saturday. Today I felt crankiness overcome me. I felt similar to how I used to feel when I had PMS. I can't imagine feeling like this for years and years. It is a terrible feeling and I have nothing else to blame it on. I am not a cranky person and I felt like some sort of heinous b****.
Please tell me this is an anomoly and will go away soon.
GInger
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Gingerbrew: I started about 5 weeks ago. I have had a few "cranky" days (unlike me), but fortunately it hasn't been persistent. My migraines are also back, which were always estrogen related and had pretty well disappeared once I was menopausal. Hoping that once my body gets used to things it will all level out. Hoping.......... 0
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Give it some time!
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NancyD, I also changed to generic and have not had any changes in se's. It could be whatever filler is being used by the manufacturer of the generic you are taking. The active ingredient for Arimidex has to be the same but the fillers can definitely be different.
For you and Gingerbrew, perhaps your body just needs time to get used to the med so as ruthbru says, give it some time, perhaps a few months if you can tolerate it. If you can't take it talk to your onc about changing to another AI.
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Medigal, thanks for sharing. I agree with you that we are, hopefully, only sharing ideas and experiences here. Not sure how your Onc can see that as a negative. To me an aware patient should be valuable and make the docs job easier. JMHO.
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Gingerbrew
as Ruthbru said, you really have to give your body time to get used to this new situation, no estrogen. It definitely has emtional effects - all hormones do, esp. estrogen, or now lack of any of it. Good news, is that you can take almost any antidepressant on an AI - and if you continue to feel uncomfortable with yourself, PLEASE ask your doctor for advice on what medication you can take to support you while you're taking this life saving medication. Good luck...
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Thank you Caerus-Sunflowers and all of you thank you for reminding me that this is a life saving drug. I felt overwhelmed by this feeling of crabbiness, crankiness and yes, discomfort in mty own skin.
I am taking 150 Effexor and have been for a few years, I was down to 75 mg and had planned to go off of it when BC struck last year. My Onc moved me back up last fall when I found myself crying and crying,
Now because I had a D3 of only 8, yes, no typo, 8, I had some massive doses of D3 and now 4000 mg a day. I also take B6 200 mg, an ultra mega vitamin for women over 50, calcium, fish oil ( a good kind), Glucosamine and Chondroitin, allegra for seasonal allergies and an antacid for gerd. I went back on this full regimen of vitamins the same day I started the generic Arimidex.I had neglacted all except the D3 for a couple months.
Today I feel pretty good, better than in the last week. Maybe the vitamins are taking hold. I also went to see a counselor and had an initial meeting with an internist. I haven't had a "regular" doctor in a long long time, just a bunch of oncological specialists for the last year. I moved here a year ago and live out where you don't see your neighbors because of all the trees. I made the effort, took the risk, to stop my car and introduce myself to my first neighbor, first non cancer person. I was surprised at how happy that made me feel. I went to a community meeting in Seattle about homelessness, that was the area my work was always in, and remembered that I have passion for that. I even felt competent to speak to some solutions.
The spell of crankiness knocked me flat because that is not my personality, it overwhelmed me in its intensity. Being able to come here to BCO made the difference because you all have collective wisdom to share, and do. Thank you so much, I want to live, I want to not worry every day that I am on some sort of rickety bridge that will collapse when I least expect it. I suppose I am more afraid than I have ever expressed. I don't want to leave this world, I love being alive and have wasted the last several years in deep depression since my mothers death and now need to find the way to step away from it back into living fully.
So, thank you for your responses. I pray I can tolerate this medicine. If it gives me a 5% more chance of long term servival, I'll take it.
Love Ginger
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I'm new to this thread, but have been taking generic Arimidex for nearly 6 months. Other than stiffness when I get up after sitting, driving, etc, and a small amount of bone pain, it's been tolerable, except for this: facial hair growth! Actually, it's primarily on my neck, the chin area, and I'm tweezing constantly. I actually keep tweezers in the car, because in the sun with the rear view mirror, I can see better than in the bathroom. Has anyone else noticed this, and if so what did you do about it?
I've lurked on this section a lot, so I feel like I already know most of you. Hugs to all!
Kathy
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