FEMARA

You were speaking of 'dyes'. This month when I picked up my Letrozole the color went from 'pink' to 'ta'. When I asked about the color change they said it depends on where they get it from. (spoooky) Anyway, my joint pain in the fingers got worse when starting the generic and also

the knuckles are getting bigger. I feel like I have hands of a 90 year old.

Lower back pain got a little worse and certain muscles bother me when I flex them. Oh my....

I tried to get a month of samples because we are going to AZ for the month of March but the nurse said they don't get samples anymore, so I have to call my pharmacy and have them fax the scrip out to AZ.

I actually called Novartis to inquire about their Patient Assistance Program...........I was told............we don't give our Femara in the assistance program................I was shocked, but they call the shots.

I worked for a Pharma company for 15 years, and there was not a drug that we manufactured that we ddi not have in our Access to Care program (that is what we called it)..............so I pay the co-pay required.............now Arimidex manufactured by Astra Zeneca is given out for free (if you qualify)................but I won't switch...............I know I am right about the SE's of the generic AI's..........you never know from one month to the next which one your gonna get, its whatever they send that month.................so each month, you could be experimenting with another generic................and each one could have a different SE problem.................or none............................its a crap shoot...........but they are not exactly the same as the Brand.....................exact means everything is the same.........apples to apples.............when your using a different dye, or filler, that is not exact..................

Artsee, so sorry not responding back to this thread, also dealing with "I HATE MY IMPLANTS ISSUE".

I now have back issues along with the knee problems. I do know that after taking some new xrays at the spine dr's office I am loaded with arthritis. Always had it in parts of my body, but now it is more severe. I am taking an MRI tonight, want to see what my lumbar spine is doing. My dexta came out perfect when that was done. I do not know whether my problems are my going to the gym too much to do zumba or the meds. I was on Arimidex which destroyed me, plus everyone telling me to see a "shrink" because of my personality change.  Started Arimidex in Dec. 09 in June of 2010 tood a break because of the severe side effects, started Femara in Oct. 2010 and have been on it ever since. All in all I have a better "quality of life" with Femara than Arimidex. 

I am now on generic too, love the $17.00 a month although my onc will give the real pills.

So after trying to stay off threads, I am back on with my bc sisters who understand. Thank you.

Hi Ladies......................have a friend on Arimidex, and gets along better then I do.........says she has no SE's, but complains about her finger joints swelling and hurting.............says her feet hurt when she walks first thing in the morning..............says her hair seems thinner,............says she has aches and pains.................so I said to her...............that is the SE's of your AI.............she said.......................no its not........................I said .........read your insert that the Pharma company gives you................or the one that comes with your script from the Pharmacy.............she said "oh I never read those.............I throw them out...............if I did, I would imagine I had all the SE's..........................thought..............ok, enough said...................I have been on Femara (brand) since July 2011.............SE's but nothing I can't handle.............no hot flashes, which is a blessing, but then again going through the "change" I never got hot flashes either.............Might take a chance on a 1 months supply of the "generic"..........we'll see.

hello ladies,

Reading all of your stories about the SE's of the AI treatment is making my head spin. You are all so brave to continue to fight. I'm supposed to start taking the pill in a couple of weeks and ?????????? I don't think I can handle it. Five years is a long time. You all have my respect and admiration.

I will try to cope on the AI, Don't want to make a decision without at least trying.

maureen

I still have the ear ringing.  I went to the ENT today and he said that I have lost my hearing in that ear.  He doesn't know if it will be permanent?  He's starting me on prednisone  to see if it will help.  I hate steroids!  They make me feel crazier than I don't know what!  Just nuts!  Anyway, we'll see.

ToManyCocktails: I love your "pic". Funny, That is how I am. Don't know when next outburst will be. But again, as I said, for me personally, Femara worked out much better than Arimidex. Each person reacts a different way. Most of all $16.00 is the price I can afford, even if its generic. I figure it this way, if the Big C wants to come back, it will anyway.

Hugs,

Artsee, I know I'm not the same but that isn't necessarily a bad thing. I don't suffer fools gladly anymore. I am more honest about my feelings and I try not to postpone getting out and doing. Have a good day.

Merlette. Not every one gets all or any of the SE's from the drug but they do get the SE's from lack of estrogen which can be mistaken for a drug SE.

I just edited to add the things that were dropped by my phone....bad phone!.....lol

Merlette- I had also been told that I could take tamox for 5 years and then follow it up with Femara for a few more as added insurance. But I ended up having an oopharectomy so the dr put me straight onto Femara.  I guess if you decide there is added benefit you could always try it and discontinue if the SE are too bad. Good luck with your decision.

Helen...I for one do not have pain in the legs. I would suggest you see your Dr. to put your mind at ease and maybe he can recommend relief. Good luck.

Ladies, I went on a self-imposed sabbatical for 6 wks off Femara.  Since re-starting on 1-1-12, I have much less joint pain & in general I feel better, I'm even losing a little bit of weight (altho I'm being super careful about what I'm eating!)  If my aches, pains & general feeling off returns you can bet I'll do another vacation!

I am terrified of Femara I started the drug in May 2010 (correcton for gardengumby!...thank you!!)  and within days had the awful stiffness (painful to walk upon awakening, significant reduction in tendon flexibility, etc.) . Here's the scary part...when I took my bone density test in June 2010, I had a T score of -1.8 in my pelvis...a month ago, a dear friend gave me a bear hug...found out 2 weeks later I had one rib fractured in 2 separate places (doc was scared CA had come back due to rib pain, but was able to rule out recurrence is CA by bone scan). That was the happy news...no recurrence. However, he sent me for a bone density scan and he called me last Tuesday to advise that for the first time in his medical practice, he has never ever seen a score as alarming as mine.   Now it is -4.9. Yes, -4.9. I stopped the Femara immediately as it is presumed it is leeching my bones. Now I am being tested for Multiple Myeloma as there is a slight concern (due to the significant and unusual amount of bone loss) that Femara could cause it...we will know in a few days. I sure hope not. I am currently undergoing a myriad of other tests to determine the extent of damage this drug has caused in just under 2 years.

I have expressed my concerns over the benefit (60% reduction in recurrence is really an exaggerated % when you are looking @ the actual study). I will know more in 1-2 weeks. Biggest problem is that I am already deemed ineligible for Lilly''s bone density drug (which is supposed to be amazing for someone in my predicament of significant bone loss - I am 48 years old, with the bone density that is "worse than any 90 year old" patient my doc has ever seen.

I wanted to stop Femara about 2 months after I started it...but docs x3 told me that in their "professional" opinion, it was more important to take Femara than the chemo and rads I went through. So, I trusted them and toughed it out, taking it every day for 22 months. Now look @ me...less than 2 years later... What a mess I am. Femara has destroyed my bones and I don't know how much can be repaired/restored?  Why my docs did not order bone density scans annually on such a bone leeching drug until I got a rib fracture, when Femara is KNOWN to cause Osteoporosis, is beyond me. Demand annual bone scans if you dare to take this drug, please!

Dear Sanaisa,

Please don't be terrified of Femara. That is the most effective non-steroid AI and I will never switch to another AI. And many women have only mild side effects, there may be some genetics involved in it. I am taking Femara for more than 6 months and doing alright but I also get Zometa
which helps a lot. I just got some information from the trial I am in (Femara plus Zometa) - only 1
woman (out of almost 40) quit the trial because of the side effects - usually around 25-30% of women stop taking any AI (not only Femara). I highly recommend anyone to join this trial in Johns Hopkins.

On the other hand my Aunt is taking another AI and she doesn't get Zometa - still she has the same level of joint pain she had before she started the treatment - it has not become worse. So you never know.
 

And another suggestion - go to the pool! It works for me -
sometimes I have painful joints but it will get better after the swimming. I go
to the pool at least 5 times a week - nothing can be better for your joints.

Stay positive and good luck!!!