LETRIZOLE IS CAUSING ME HORRIFIC SIDE EFFECTS.

Hi there,,

I haven't started them yet (and not long forward to it),  but from what I've read ther brand cam maker a big difference. Some of ther genetic brands seem to be worst for this due to the other ingredients like those in the coating.  Some women find taking supplements like vitamin B12 help as well.  Could you make an appointment and get checked out with blood tests and a bone density scan? Good luck finding a solution:)

Hi there

I am so relieved you posted this as I thought I was on my own with late onset side effects. I posted just yesterday as now been diagnosed with tachycardia. While I appreciate this could be due to a lot of things (I am in my early 60s), the side effects from letrozole have got SO much worse in the last couple of months and the rapid heart rate seems, to me, to be linked to the hot flushes.. Like you, started with the odd niggle but now have daily pain in my  joints, especially in my shoulder which means I have trouble lifting my arm , my fingers and wrists. The sleeplessness makes me weep with frustration. You have described exactly what I go through almost every night. You would think getting next to no sleep at night would mean you could at least have a couple of hours quality sleep through the day - not my experience. 

I am so frustrated by this as thought I was coping well with minimal side effects so to suddenly have side effects seems very strange. I am so sorry you are going through this too. I understand the dilemma - do we keep taking them to keep the dreaded C at bay - or do we try for a better quality of life now and take the risk????  I am waiting to see a cardiologist and then will consider trying a different brand (I am on Accord and it has seemed to suit me til now) and if that fails, might see my consultant to ask about risk if I want to take a break for a couple of months. If I find anything that alleviates my symptoms I will let you know. In the mean time, you are not alone.

Love from Lesley xx

i was told to be CAREFUL with supplements as they can affect absorption of the latrazole...so was told to stop taking the Turmeric with pepperine...I take manuka honey , the strongest I can afford, I take cbd oil, stronger than Holland and Barrett...I am now afraid to take things because so far told no Turmeric . Yea ok to cbd oil and Manuka..I am due back for my 18 month check in about a month,. so will see how not taking Letrizole goes and go from there I guess.

Good luck on your treatments.

Hiya, 

Yea, was alright and bearable side effects. spasmodic insomnia, the occasional twinge in my wrists, stiff ankles when I have been sat down for a while...I had mood swings, but I have always been an up and down kind of person..Mainly up....

Now I don't get a full nights sleep without either being exhausted from days of hardly any sleep or if I take sleeping tablets...which then makes me feel out of sorts and sluggish., I wake often, for no reason, its like half hour sleep, awake, sleep awake...I literally have periods of going without sleep where the birds are singing and I know there is no point cos its almost time to get up...I BLAMED MY LOW MOODS ON BEING TIRED..i NOW KNOW ITS ANOTHER SIDE EFFECT TO CONTEND WITH.I also know to not fall in trap of daytime sleeping cos even if I lose a whole night, if I sleep for even an hour in the day I am up till dawn.

I am scared not to take them and stopping has caused me stress....so now I lay awake thinking buts and ifs and wondering...

For me I hope going on another brand will sort it, I did read on the site that makes Letrazole that it goes on working long after its stopped being taken, it continues to protect you...So i dont think stopping it would immediately set cancer off....

I hope things settle for you....btw, Im 55. so I know I am going to get some creaks and aches, but this has gone from fit and healthy to bang Im semi crippled and old over night.

Hi All

i was diagnosed in October 2018 and since then have

had mastectomy and diep reconstruction. All went 

perfectly. This  was followed by three weeks of radiotherapy , which

starting mid Jan.I recovered well from surgery and the radiotherapy was as easy as these things can be under the circumstances.

However, I was prescribed Letrozole and started February 

of this year. I’ve gone from being up beat, confident and very 

positive to feeling tired, disinterested, depressed and have

pains in places I didn’t know existed . I now get out of the car like an old lady.   I also do not sleep, the smallest things wake me up, I’m so tired I could cry. Also I now have terrible pain in the new boob and in my rib cage. The physio tells me it’s the radiotherapy, as it’s only 3 months since it finished but still doesn’t explain the pains in my body

thar has nothing to do with the op.  My oncologist never really answered my questions and I’m at a loss to understand what’s happening. How can I feel worse than I did before? Has anyone had similar experiences? 

Hi I know lots of lovely ladies struggle with letrozole and I have every Sympathy with them. There are also lots who don't have any SE at all. I have had almost every brand on tge market over the last four years with no problems at all 

I had terrible aches & pains on letrozole & after chatting with oncologist am now on Tamoxifen. Depending on brand have have had a few side effects but find Relon brand suits me. 

Maybe an idea to see if oncologist will swap you to Tamoxifen    & see if thats any better. 

Lovely person all that poop is because you coped through the difficult bits. You no doubt we’re determined not to look pathetic or a big cry baby. So you pushed though and coped but now your body has said enough. I want to mend. Stop please. And let me mend . Listen to her and don’t beat yourself up about it. Ask for help from people to do the things that overwhelm you. I’ve recently stepped away from the site as I found I wasn’t mending mentally and emotionally . But I pop back now and again as things have improved 

So time to make you a big priority in your life and sit back to mend 

Sending you gentle and sustaining hugs

Leolady56- 

Hi Sugartc, I'm on Tamoxifen and have terrible sweats and chills,and disturbed sleep as a result. I'm currently on Teva and asked my doc if a change of brand might help reduce these side effects. He felt not as he thinks SE are related to hormone suppression rather than the drug. Just wondered if you have any experience here as from your post it seems you have tried different brands. Thanks in advance and best wishes to you.