FEMARA

I began Femara (Letrozole) in May 2011 and, after discussing the pros and cons with my MO, chose to remain on it after my 5 years were up. I have had sporadic insomnia issues throughout this time, sometimes not being able to fall asleep when I first go to bed and other times waking after 3-4 hours and not being able to get back to sleep. Both Melatonin and ambien gave me headaches. Benadryl made me hyper. Chamomile tea, physical exercise, drinking a glass of milk before bedtime: none of them worked for me. Finally, my doctor prescribed .5mg dosage of Ativan (Lorazepam). This relaxes me enough so I usually fall asleep within half an hour. If I wake up to use the bathroom, I return to sleep right away. I'm an early riser and I don't experience any negative after effects the next day. Although I limit myself to only taking take one, once a week, because it's addictive, I've found that I seem to have no problem going to sleep the next night or two.

Hello friends - posting this to both Arimidex and Femara groups as I read about SE's on both. 

Information posted by Lisey on another forum - it may help those of us who are having/have had severe SE with AI's: 

Genetic testing for medication tolerance. https://www.kailosgenetics.com/pgxcomplete

Cutting edge testing. Lisey is a big proponent. I plan on checking it out since I experienced debilitating SE's from AI's - Arimidex and Letrozole - poison to me - name brand and generics. 

Yes, I was disappointed with their options. I take several medications, and only one was listed. However, it may be a lifesaver for some folks!

Hi all. I have been on Femara & Lupron for 3-4 months now. (tamoxifen & Lupron before that for 2 months) My doctor prescribed Cymbalta to deal with the bone pain and it has been very helpful. My pain is gone but I now have insomnia and constipation. It was a pretty fair trade I thought. So for insomnia I try different things on different nights. I just recently switched to taking all my meds at night. That has helped a bit. I also drink some magnesium to relax muscles - Calm brand. I have some valerian root extract, lavender oil, 500 mg sublingual melatonin. I also listen to the Calm app and try to stay off electronics or exciting books before bed. That is a good night if I can fall asleep. If I have pain then I take one nighttime advil and if no pain half of an ambien. (hot baths help too, all the same things we do to get our babies to sleep - minus the drugs!!)

One other thing to note with my pain - my diet and exercise contribute to minimizing the pain. I eat mostly plant based foods with small portions of protein (fish/chicken/nuts). When I add dairy or gluten I can feel it later and it isn't worth it to me. I also try to get exercise every day and often if I get up and take a short walk I can relieve a lot of my pain. It is counter intuitive. I am also 45 and was very fit at my diagnosis so exercise has been pretty easy for me to keep up with although my intensity if much less than before. I just try to move and I feel better.

Other side effects - ridged & peeling nails (I take biotin and keep them cut short), loss of hair, and dry eyes (lubricating drops before my contacts).

Lastly - I am very PR/ER receptive so my doctor is doing neo adjuvant therapy on me before surgery. My ILC ump was 4 cm when we started and is now 1.5 cm. This shows me that the AI therapy is very powerful and is working well - for me. Everyone is different.

tanganschris - sorry you are having pain. Did you consider switching to a different AI? I was on Femara for one year with typical SEs. Had a significant hair shed so doc took me off for 2 weeks then I started Aromasin. Hair is bleh and SE are similar but a bit reduced in severity. Definately fewer hot flashes. Worth a try

Marijen, that study would be so much more exciting if the study arms had a lower side effect profile.

Yeah, the way I read it, the effectiveness at blocking estrogen was the same at the lower dosing than the standard, but the SEs remained the same. Ugh!

Margo- I was having same issues on Letrozole. I am 1.5 years in, and it seems to be lightening up. Still wake up wit hot pins and needles, but not every night anymore. Overall, feeling pretty good. Hope it gets better for you too.

If you are experiencing dizziness, you should see your doc. It may or may not be Femara and you need to find out that it's not from anything else.

i have been on femara for 1.5 years now, and in the last month have noticed not waking up in the night with hot pins and needles. Hoping the trend continues. Just wanted to say that perhaps after body gets used to the interloper, se may diminish. Hugs to all

Here's a bit of interesting information in regards to knee joint pain

Don't get corticosteroid injections without discussing the side effects first

Corticosteroid injections can relieve inflammation, but they should be limited to three to four times a year at most. Injections can affect multiple organ systems and cause osteonecrosis, the death of bone tissue.

According to the Mayo Clinic (resource no longer available at www.mayoclinic.org), some doctors are also concerned that injections could weaken the protective cartilage around the knee joint. Patients should always talk to their doctor about side effects before receiving these injections.

Stellamaris what companyis the manufacturer of your letrozole?

Have any of you ladies ever double dosed your femar? If so, what side effects didyou experience? Thanks...trying to do a sanity check.

I have a little pill minder right next to my coffee pot. Can't start my day without my latte so never miss my pill either. And on the plus side I always know what day of the week it is

I need your opinions: I've been takingmy Femara for about 4 years and as an added side affect, I've been experiencing UTI's and thinning of my Urethra opening...it started in June and I'm in pain when I urinate even though I don't have a UTI anymore. Anyone else experience this? If so, how are you treating it? I've had issues for several years with vaginal dryness and thinning but have been able to deal with it using various methods.