Agreed 4 week Letrozole break - diary of findings

Hi AnnJac ...I took a 4 week break from Letrozole but a slightly different reason, I was having a lot of side effects mostly bad joint pains and backache and tiredness.  After the break I was put on anastrozole to see if the side effects were lesser.  Quite honestly my pains are a lot worse, some days, crippling.  I have my 2nd mammogram soon so hopefully have chance to get speak to my oncologist.  Hope you find something that suits you better.

Keep your chin up. 

Hi ladies

I took letrozole for just over a year for my endometrial sarcoma which is hormone dependent. My mobility became so bad I ended up in a wheelchair. My Oncoligist told me to stop letrozole to see if it made a difference. My joints especially my hips and knees were so painful, but also the pain in my feet was terrible.  Within 2 weeks my joints felt better, and I could walk far easier. I then started on anastrozole, and although I still get stiff and achy, especially if I have sat for a while, it is far more manageable than the letrozole. I have tried several brands of anastrozole as well, and found I got more symptoms than others, so it might be a case of finding one that suits you. Will be interesting to see how you get on now you have stopped letrozole, hope your symptoms improve for you. 

The weird thing is I have no pain.  Some stiffness.  But I can't move my left foot - doesn't hurt just won't move.  And left leg particularly weak but some weakness also in right leg.  I do have some fatigue - but that may be the effort of trying to move my legs. 

Brain scan clear.  Awaiting spine scan.  Then will be referred to a neurologist but thought ruling this in or out concurrently would not do any harm.

Sorry the weakness is no better . I hope you don't have to wait too long for yiur spinal scan. I'm not surprised you are depressed after everything you have been through, and ongoing problems. You are a very brave and determined lady, big hugs xxx

Thanks seaspirit44.  Still early days off the Letrozole  . . . . .  Hope you are managing lots of swims in the open air.  They sound so good for the spirits ....   xx

Hi Anne,

I read your story with some concern...

I have been on various different brands of letrozole for over a year, leading eventually to fatigue which I couldn't tolerate. I heard about Femara brand which is reputed not to have any side effects. My GP wouldn't prescribe the brand Femara, however, as it is very expensive - £80 to the more usual £2.50 per month's supply of the other brands - SO...I decided to try it anyway, obtained a private prescription and bought it over the counter at a local chemist [had to shop around as the first chemist I tried wanted to charge £127!] It cost me £82. I have been taking it for a week, and in spite of occasional tiredness, I am feeling much much better...more lively, less fuggy-headed and more energy to tackle things. also, my bum-ache [yes, really!] has all but disappeared. If my story helps then I would be really delighted...hope your experiments with a letrozole break work for you in the meantime.

Lots of love

Eva2

Thanks .  Glad Femara is helping.  Now you have proved that it is better for you is it worth asking your GP again abiut prescribing.  Use the argument that overall cheaper as you now won't need so many consultations, other drugs to counteract the side effects etc. 

I haven't had the same brand twice!  Mind you only been on it for 4 months.   Can't say I noticed any difference between the brands and my issues may not be Letrozole related.  But an experiment that needs to be taken to rule out or in .....

Hi AnnJac,

I'm gutted that so far nothing seems to have changed, really hope it does!

hugs xxx

Thanks Moomy

Pinning my hopes on early days yet  . . . . .

Thanks AnnJac,

Keep persevering..re the side effects issue, I worried myself sick for nearly a year. I made 2 visits to the GP, 6 months apart as I had no clue why it hurt to sit down for periods of time particularly on getting up from sitting - ouch! - being told by the first GP it was sciatica and by the second that it was cocydynia [not sure I have correct spelling]...I have made my own mind up it was a side effect of Letrozole as I noticed it roughly at the time I started taking the tablets. The ONLY mitigating factor might be that now I am doing more exercise...but still, you'd think the docs might have considered SE as a possibility, to put me out of my anguish! We all have to do our own research and experiments, it seems!

Really hope you feel better soon.

Love

Eva2