Hi Judpet,

We all react differently to drugs. The side-effects were obvious pretty quickly with me, but remember that I had already been taking Tamoxifen for the previous year. Other side-effects didn't manifest themselves until I was about 3 years into taking Letrozole. At that stage I had to have both knees replaced and had 5 eye operations throughout the following 2 years.

I am sorry to hear that the Citolopram didn't work for you. There are a number of different anti-depressants and, it's a case of finding one that works for you. You can also get an anti-nausea medication and a pain killer if needed. I hate taking tablets of any kind, but had to take all 3 types to get through the course.  Did you ask your care team about changing to another hormone therapy? It sounds as if this might be the best solution. Why not call your breast care nurse on Monday and discuss this?

I hope that you find something that works for you.

Kind regards,

Jolamine xx

I am so glad I found this post, I was beginning to think that all these problems I have been having have been in my head, especially when you are told repeatedly by the people you are putting your trust into that "No, that wouldn't be causing that".  

I have been on Letrozole since November 2018, and like nearly everyone who has posted, I hve been getting all the symptons mentioned, but I have also develepod a serious skin condition which is Autoimmune Blistering Disease, This has been confirmed by Dermatology and I have been given Steroid cream to try and help, but since having my lumpectomy 3 weeks ago, the condition has worsened, so I have stopped taking the Letrozole about a week ago but not yet noticed any improvements with anything.

The oncology Dr has now prescribed me an alternative, which is Aromasin 25mg, but to be honest reading the side affects, they are no better than the Letrozole, and the rare side affects state "A breakout of small blisters on an area of the skin as a rash", and also, it states do not take them if you are not menopause clear, and I am not sure if I am, they said they would do a blood test, but this has not been done, so I am not taking them, like all of you who have stopped taking Letrozole, I also want to start feeling better on a daily basis and I am not willing to keep putting my body through this, is it not bad enough that we have all had or still have cancer and are going through either Chemo or Radio  treatments which also have their own side affects, why would we then want to carry on taking this medication which adds to the list of side affects.

If anyone is on or has had Aromasin, I would be very interested to hear if you have suffered with similar side affects whilst taking it.

Thanks in advance, this post has been so helpful. 

Dee xx

Hi Dee64, 

if you go back through this thread you will find several posts from me about Letrozole and moving on to Aromasin. So far Aromasin has not caused me anything like the problems with Letrozole. I have occasional flushes, but none of the muscle aches and leg pain and feeling so old before my time that I had before. Everyone is different but I would recommend giving Aromasin a fair try. You can't be any worse off than Letrozole and my experience has been a vast improvement. It is I believe a newer drug. I am grateful that my consultant listened to my problems and put me on it.

as I said there is a wealth of information on this thread, do look at it. 
good luck. 

Hi Snowdrops,

I'm so glad to hear that you are feeling so much better on Aromasin instead of Letrozole.

Long may this last!

Kind regards,

Jolamine xx

I have just been to my first oncology appointment, and was expecting to be put on Tamoxifen, but it was suggested that i go on Letrozole, as the drug was more effective for preventing re occurance. I had not done any research of letrozole, so just accepted what he said, that it would be the better drug to take, although i was somewhat concerned when he said i would need a bone density scan, as it can cause osteoporosis. After reading all these posts, i am horrified, and don't want to take it now. I have debilitating tinitus aswell anyway, so don't want that to be made worse! I have taken one tablet, and my ears are ringing like mad. I think i may try and contact the consultant tomorrow to ask to have tamoxifen instead, although he seemed to be trying to put me off tamoxifen, saying it can cause uterine cancer and blood clots. I have no idea what to do now, but really don't want to suffer from all the joint issues people are complaining of, but i don't want uterine cancer or blood clots either!! Has anyone been ok on this letrozole??

Hi Red,

It's all a bit daunting at this stage, isn't it? I have had 2 bouts of breast cancer in the past 10 years. I had a lumpectomy and took Tamoxifen for 1 year. After a year I developed a second cancer in the same breast and had a double mastectomy followed by Letrozole for 6 years. I stopped taking this in July 2017. Both of these drugs have side-effects. Some people have a lot of bother with them, whilst others sail through with no trouble at all.

I have had bone density scans and these have shown no change throughout this time. I found that Tamoxifen caused me a lot more emotional upset and terrible hot flushes. Letrozole did cause joint problems to the extent that I had to have 2 knee replacements half way through my course. It is difficult to say how much this is due to Letrozole and how stiff my joints would have become in that time anyway. It really is a lottery, as all of the hormone therapy drugs used in treatment have side-effects, although some are worse than others.

There are other drugs which your oncologist could prescribe but try your Letrozole for a little longer first - one tablet shouldn't cause the tinnitus as quickly as you describe, as it takes a while for it to get into the system.

The one good thing that I can say for Letrozole is that I am still here and living a fulfilling life after 10 years.

Please let us know how you get on and what you decide to do. We are always here for you.

Kind regards,

Jolamine xx

Hi, I don't know if this info will help as  I've only been taking Letrozole for 3 months so I'm not sure whether it's long enough for the pain to start kicking in on not, but I started taking Tumeric capsules the same time as the Letrozole and although I have a few dull aches it's nothing that I can't cope with, I do get the hot flushes though. I only mention this because before taking letrozole I suffered for years from crippling arthritic pain in my lower back, that pain has disappeared since taking the Tumeric & left me wondering whether it really has eased the side effects of the letrozole.   

Hi jolamine well I’ve changed from letrozole to anastrozol and have been on them a week now and still having the same side effects nausea sweating I think they must all have the same side effects no difference just hoping the longer I am them will the side effects get less hope so as I have had enough seriously thinking of stopping them altogether and getting some quality of life back kind regards judpet 

You need to give them 6 weeks for it to get out of your system.  I gave it a month & thought there's no difference, but it took about 6 weeks to notice the difference.