FEMARA
Comments
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I haven't posted in a long while and have been trying to catch up a bit. I am glad to see that I am not the only one suffering worse SE's on the generic. Judyb... I have gotten very stiff and painful thumbs and general weakness in my hand strength since switching. I have to wait for my DH to open the simplest jars and packages. Not to mention that my whole body has gotten pretty stiff and my hair is definitely thinning. My last 90-day presription of letrozole was manufactured by Breckenridge. I am going to try calling MEDCO and see if they will switch me back to Femara since they are the ones that made the switch to generic. If that doesn't work, I will put in a call to my ONC.
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Monty, what would you possibly take that contains estrogren unless it's HRT medication? I am puzzled ...unless it would be an IVF drug?
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Soy is a big no no... don't know if it has estrogen but it may........
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justagirl,
There are many things that contain estrogen, both plant & animal based and we are supposed to stay away from using them. The meat we eat contains animal hormones, and when massed produced the farmers inject extra. The milk we drink contains animal estrogen and so the list goes on.... Soy contains plant estrogen and that is why we should stay away from that.
Artsee, I am also PR+ so I should avoid products containing progesterone too. Not much hope for me with a solution for "down south" I guess. Thank goodness I have an understanding husband, and my onc made sure she explained this problem to him when I signed up for Femara.
Gaynor
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Hi, I haven't checked in for some time. I started generic Letrozole October 2nd. So far, so good. I've had aches in my big muscles (like glutes) a few times but can't be sure it was the drug. (The only reason I think it could be is it happened suddenly for 2 days when I started taking it, but has only happened a couple times since.) Crossing my fingers that SEs won't come with time, as they have with a number of you.
I was astonished to find that my 90 day mail-order prescription for the generic was FREE! No idea how much the real Femara would cost, if I need to switch. Cross that bridge if I come to it.
Just went for a long walk through the fall colors of Denver City Park. Hope all of you have some beauty in your day!
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Glad you are having no major problrms with the generic,treeskier. I may be switching also since my femara co-pay has increased from $88.+ to $126.34 for a 30 day supply. My pharmacist said the ins. company is trying to encourage generic. They sure got my attention ! I am doing well on femara and don't want to change. Please keep posting your results as it will help with my decision. Thanks, Jane
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I had the butt aches again today and I'm getting more convinced that they are a side effect. However, so far they are mild enough that I can almost ignore them and haven't felt the need for more than stretching.
My understanding from the AI threads is there are 3 different manufacturers of Letrozole. EAch will have the same active ingredient but different "buffers" and whatnot, so results could be different I would think. The one I'm taking is manufactured by Breckenridge.
I'm holding a good thought for you!
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Can I just join in here?
I have been taking Femara for 8 months now and have noticed, amongst other SEs that my head hair is def. thinning on top, not round the sides and back, though. Also, hair "down south" as someone put it, is noticeably sparser! Is this common?
Supposed to be an excellent drug to prevent recurrances, though. There was a newspaper article about that here the other day. I've already had a recurrance whilst on tamox. early last year, so hoping for the best with this one.
Sarah x
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I haven't posted in a while but wanted to give some input on the Femara generic, Letrozole. I began Femara in early May and was on it for 3 months. I was very lucky that I experienced no side effects. By the time my 90 day supply was up, I read that the generic of Femara, Letrozole, was being produced by at least 4 companies: Accord Healthcare, Inc, Mylan Pharmaceuticals, Inc, Qualitest Products, Inc., and Teva Pharmaceuticals. Because my insurance company gives me no breaks, I went to my local pharmacy and asked for the cheapest generic they could give me. I ended up with the Letrozole by Mylan. I comes in a 2.5 mg tablet and is a dark golden color. As with the Femara, I experieced no side effects with this pill either.
My suggestion to those who are suffering from side effects from the generic Femara they're taking is to explain your problem to your pharmacist and ask for a small supply of a different generic so you can give that a try... I'd guess that 10 pills would give you an idea of how you're reacting. This might save you from having to switch back to Femara and its high price and a different generic might not give you any bad side effects.
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Interesting....I didn't know there were lots of different Generics. I was given one (hot pink color) and assumed that was the ONE. Was hoping it would be a little nicer to me but not so. I have tiny fingers that are getting bigger bones at the joints. Yuk.
As for the hair...yup, it has been falling for three years. Pretty much all over..all agreed? You'd never know it when my hair is done, but my brush is full and when I wash it, the strands just pull out. Of course the alternative I 'hate' so I'm thankful I have hair. Thinking about cutting it like the 'Avatar pic' but I kind of like the all one length to the chin. Comforts me.....
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Ladies.............just a suggestion.........my hairdresser recommended a product called Nioxin..............I am using it, and I do see a difference.....................she says there is some very fine....new hair growth last time I was there............been using it for about 1 month..........There are a few types of "Kits"...............it is according to your hair.............thin, medium, thick, and whether it is "treated or untreated"......................ask about it, and see if it helps...........it isn't real cheap, but once you get your first kit............you can get it cheaper online....just check the different sights..........google..........Nioxin..............but my first kit came from my hairdresser......
Also it is different then Rogaine, in that even if you stop doing the treatment, whatever hair you have grown remains..................with Rogaine my hairdresser said you must keep using it, or whatever growth you got, will stop
Just a suggestion.
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I know I am a retired hairdresser and have used it since BC in 2008. I just didn't use it all summer and just got a new supply. It is good stuff.It'll just take a while to work but it should keep the hair from falling out as much.
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Thanks for the suggestions, ladies. I'm glad I'm not the only one with this annoying SE!
Sarah x
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artsee, my tiny fingers are not so tiny anymore, either! I can't wear my wedding ring -- can't even begin to get it over the knuckle. This happened after a few months on Femara.
I was given some Nioxin. I like the shampoo okay, but I can't figure out how the conditioner helps since it doesn't touch the scalp. Does the conditioner just fluff up the hair shaft so your hair will *look* thicker? I'm wondering if you could use just the shampoo and get the same results as far as reversing hair loss...?
~lulubee
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Lulu..the shampoo and conditioner get your scalp and hair ready for the most important part of the regime. The "reconstructive treatment' which is pumped on and looks like water is a MUST.pump a few drops on the scalp and then you rub it all over. This brings the blood to the scalp surface which encourages hair growth, So without this third application, the sh + con does nothing for growth and keep your hair from falling out. It's a little pricey but worth ever penny.You can purchase the starter kit to try the trio. The ? about the conditioner...it makes your comb run smoothly through your hair without pulling out hair.
Artsee
Romans8..why is this happening with more pain on Letrozole? Did your Dr. give you answers?
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Thanks artsee-- I didn't know about the treatment step. I tried the Nioxin conditioner but I like my usual conditioner much better -- my hair is fuzzier and doesn't feel as silky with the Nioxin conditioner. Since conditioner doesn't impact the scalp, you could likely sub your own conditioner and still get the same results.
~lulubee
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Has anyone lost weight while taking femara?
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Not me......I have gained a tad. I also haven't heard of anyone loosing but if you are "good for you". Meds seem to put on some #'s.
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I've gained 12 pounds in the year since my oophorectomy and starting Femara. Just enough to make me need different clothes. My oncologist said it's not likely to come off so I might as well let it go and move on.
Has anyone gained weight on Femara and actually managed to lose it again while still taking it?
~lulubee
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I gained a few pounds after starting Femara almost 3 years ago. Or, that's what I was blaming it on. I've lost that weight in the last few months, but I started walking more and keeping close tabs on my weight. And, I do think some of it was fluid retention, probably from Femara. Don't give up! It's harder to lose as we age, I've decided.
Lane
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Living in Spain , I´ve taken at least five different brands of generic letrozole in the last 12 months .Not happy about it at all , whether generic or Femara , i don´t think it´s good or helpful to be switched and changed all the time .
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I have a question for all of you ladies---Does anyone on femara or letrozole have extreme sleepiness? Like to the point that you are almost falling asleep sitting up in a chair? I'm not sleepy all day long. It comes and goes in waves, but when I get the sleepies, it is like nothing will stop it! It is almost like a twilight-like zone that I go into. It is awful! And I've gotten it a few times while driving. . .
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weety-I did when I 1st started Femara November '09-my fatigue was terrible. I was taking it in the mornings. I switched to night-time in Jan '10 & have not been near as tired as I was those couple months. Plenty of other side-effects but that bone-tiredness, not so much.
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Hi weety --
I had it worse at first, too. Like Eph3_12, I switched to taking Femara at night and that seems to help. I still have a little sinking spell sometimes in the afternoon (hey, don't we all?), but the fatigue is not as insistent as it was the first 6-8 months or so.
I have found, though, that I have a much harder time reading now -- a couple of pages and I start to get heavy eyelids! Arghh! It's very frustrating because I used to read all the time and now I can hardly get motivated to even start a book because I know it will just cause me to take naps I didn't mean to take!
~lulubee
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Thanks for the replies. I did switch to taking it at night and haven't noticed any change. Like I said, though, it's not like a constant fatigue. It goes in cycles so I'm assuming it has somehow messed up my sleep/wake cycles. I will be fine one minute and then all of a sudden I will get that extreme sleepiness come over me. My eyes start to go in and out of focus, and it feels like I can't stay awake. I wouldn't be surprised if I have dozed off for a few seconds or so just sitting there. It's a weird sensation, too, because it's like I'm not all there. Like a twilight zone. Then 10 minutes or so later, it's gone just as fast as it came on. Weird. I've been on femara for about a year now, so I don't think it will go away. I actually didn't notice it as bad at the beginning as I do now.
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My husband was having issues like that and actually came down to maybe having 'Narcolepsy". Goggle it, it's quite interesting but again one of those maladies that doesn't really get a diagnoses.
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yes, what artsee said---I was thinking narcolepsy from your description. A friend of mine has it-she takes meds to not fall asleep! I'm just the opposite--haha
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Oh gee. . . narcolepsy???? Can you just all of a sudden get narcolepsy? Or can a medication cause it? Or is it something you have to have already had?
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My husband has always had trouble staying awake. It's gotten worse with heart meds.
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weety....I, too have crazy fatigue...comes & goes, mostly comes!! I only take 1/2 femara a day. Oddly when I take it at night, I can't go to sleep. I started taking it at about 5pm. It's a little better, but I'm definitely not myself. I know I don't sleep well. Pain and discomfort every time I turn over ...from DIEP surgeries, hot flashes, getting up and going to the bathroom, UGH!!! I have all kinds of things I could take...flexeril, valium, xanax, pain pills, tylenol pm....but I drive a school bus and get up at 4am. I just can't risk having something in my system. On a Fri or Sat night, I will take something. It is very discouraging. I was just thinking how busy I would normally be getting ready for company at Thanksgiving, planning the meal, etc. I can't get myself out of the recliner!! My blood work is all good....so femara is all I know to attribute it to!
lulubee- Reading used to be my "escape". I can barely make it through a page either!!
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